My Mother Has Dementia

Mum's First Day Back Home

2012-02-04T22:52:00.001+11:00

What a big day we've had. I was so frightened I wouldn't survive even the first day.

The day began with Mum banging on my bedroom door somewhere around daybreak to tell me the cats were 'starving' and that I had to get up and feed them NOW.

I was not impressed. The cats are on a strict routine of two meals, the first at 9 a.m. and the second at 5 p.m. This way, they eat everything that's put in front of them, nothing is wasted and they're all sleek, shiny and fit.

Mum suffered from a bad cat obsession when she lived in her own house, up till a year ago. She had dozens of plates of cat food all over the house, fifteen water containers (for one cat!) and she wouldn't let the cat walk anywhere. It had to live on her bed.

If the cat ventured off the bed, she'd grab it and put it back up there. If it wanted the toilet, it would just go on the doona. Its water and food were kept on the bed, which Mum also slept in.

Mum would also hide plates of cat food, including fresh meat and tinned food. She'd hide the food in the cupboards and a few days later you'd find it because you could smell it. She seemed to be hiding the food from imaginary intruders.

The cat was never allowed outside - in fact it was never allowed out of the bedroom, or off the bed. When I tried to improve things for the cat, Mum would get furious and on occasion would push me down the steps and shove me.

The cat obsession was the main reason I thought she'd have to stay in a nursing home and I'd never be able to manage her.

But after nearly a year of not living with the cat or sleeping with it, I thought we had the problem beat. She'd visit me at my house and not do anything silly with the cat. She wouldn't even ask me to feed the cat.

But this morning's shenanigans have me worried the obsession could come back.

I decided to try and deal with tomorrow morning before it arrives. I couldn't get the key out of the back door lock, so I got a handyman over to replace the lock so I can lock the door and take away the key.

I've put newspaper all over the windows where she might look out and see 'starving cats' (since I had to take two of her cats, there are five. Her second cat, she doesn't care much about and never even says hullo to him. The whole obsession is with the older cat).

So when she inevitably wakes up before me, she won't be able to get out of the front or back doors and she won't be able to see out of the back window to find out if there are starving hungry dying cats out there.

I have told her a few times - and maybe it sunk in, maybe not - to get herself some breakfast if she gets up early, then turn on her radio and go in the lounge room with it.

I told her it's Sunday and I'm sleeping in.

I don't expect Alzheimers has any respect for Sundays, though.

If her cat was a nice cat, I could handle the situation better. But it's one of the nastiest, most vicious and bad tempered cats I've ever met. It hates all the other cats, hates people and scratches and makes Mum bleed whenever she picks it up.

Here is a nice cat, though. This is Mr Fuzz. He's very photogenic.

Out of the nursing home, into the fire

2012-02-03T21:07:00.000+11:00

I decided to move Mum out of the nursing home. There was nothing wrong with it - she was just too bored there. She likes to do many things that people in nursing homes mostly can't do, like walking for miles, hanging out washing and playing with the cats.

I had a horrible day thinking about it. I left it until late afternoon. I wondered if I would be a failure. I wondered if I should just jump off a bridge if it didn't work out. I wondered if she'd be as horrible as she was when she was in her own house and maybe even kill me by pushing me down the steps like she did in the past.

I wondered how I would avoid shouting or getting angry. I thought I must be mad to be doing this.

Nursing care should be organized within two weeks. This is because the government assistance is already activated from last time she had help.

After being terrified all day, it wasn't as bad as I expected. She's now in bed with one of the younger cats that can stay inside without making a mess. She finally accepted that her old cat can't come inside.

I have got very irritated through the afternoon but just kept firmly answering that the cats are fed at 9 a.m. and 5 p.m. and never at any other time and if I keep that up, maybe it will sink in that I am not going to hand over the cat food to her.

Mum at a wedding in November 2011.

On holiday in Echuca, Victoria

Weird Conversations

2011-11-22T08:25:00.001+11:00

My grown-up kids call Mum Nanagoose. This is an email I recently sent them. It shows the progression of the disease from a few months back. I went to see Nana for a few minutes tonight. I gave her a carton of milk. I showed her that I'd opened the carton and said, "Now don't go ripping the top off the carton! It's already opened!"I put it in the fridge.Nanagoose: Can I use that?Me: Yes, you can use that.Nanagoose: Can I use it for anything?Me: Yes, you can use the milk in the fridge.Nanagoose: Can I use it for anything at all?Me: What were you planning to use it for?Nanagoose: I don't know. I'll use it for something.AAARGGH.

I asked if I could look at her bandage.Nanagoose: (looks at both legs) What bandage is that?Me: The one where you had the operation yesterday.Nanagoose: Did I have an operation? I can't remember that.Me: The one on your neck.Nanagoose: (checks neck, finds bandage) Well, I never knew I had an operation! I was asleep, so how could I remember it!Me: Don't pull the bandage off again or they'll have to put you in hospital and tie your hands to the bed. If you pull that bandage off you could bleed to death.Nanagoose: I won't pull it off. I don't pull bandaids off. Do you think I'm stupid? (Oh yes she did, all night long).AAAARGH.Me: And here's some makeup. You said you needed some.Nanagoose: Good, can you open it for me?Me: Here, it's open, now test it on your hand.Nanagoose tests it on the inside of her hand, on the palm.Me: You don't test makeup there. You test it on the back of your hand.Nanagoose tests it where you test perfume, on the underneath of her wrist.Me: No, not under your wrist, test it on the back of your HAND.Nanagoose: Where's that? I don't know what you mean.AAAAAAAAARRRRRGGGGGH.Me: Here are the teabags you're out of.Nanagoose: Give them to me! I'll hide them right away!Me: No, don't hide them, you won't find them if you do that! Put them in the cupboard!Nanagoose: No, people come in at night and steal them!Me: No-one comes in at night and steals your teabags. (Putting them in the cupboard).Nanagoose: When you go I'll hide them. The nurses come in and steal them all the time.

AAAAAAAAAAAAAAAAAAAAAAAAARRRRRRRRRRRRRRGGGGGGGGGGGGGGHHHHHHHHHH

The Shufflehop Stomp

2011-09-20T15:41:00.000+10:00

Most days I collect Mum and we take the dogs for a long walk, either by the beach or near the harbour. The last few times, she's walked normally for a short while and then started this shuffle-hop-stomp walk. She stamps her feet onto the ground and lifts her legs high in the air, or else she shuffles her feet. If I say to her, "Mum, what are you doing? Walk properly!" she will make some excuse - "I was listening to the sand squeak", "I was enjoying the sound of the gravel" - and walk normally for a minute or so. Then the strange walk will start again.It seems when she is aware of her walking, she doesn't do it, but as soon as her mind wanders off the task, the shufflehop stomp starts again. I think this is a bad sign of progression of the disease. The neurologist told me last week he is quite sure there are now two dementias happening, both vascular and Alzheimers. This is very depressing.

The dogs like to walk with Mum.

Mum at the beach where we walk.

Wombats and Wallabies

2011-09-20T15:20:00.000+10:00

We took a drive down to Kangaroo Valley. It's a little dairy farming village in the mountains surrounded by rainforest. You can always see wombats and wallabies beside the road. Mum loves it there. We got out of the car and walked around the village, having lunch in a cafe. She always behaves herself when out on a drive like this, which is a relief. A lot of people tell me not to take her on drives or holidays as new places upset them, but drives seem to make her happy and she seems to still recall them days later.'

This is a garage once owned by Mum's cousin in the 1930s and 1940s.

The primary school and headmaster's residence.

There was a wombat in the middle of the road!

A nice trip to Sydney

2011-09-20T14:37:00.000+10:00

Mum's always happiest when in the passenger seat of the car, so we go for a lot of drives. A couple of weekends back we went to see the cemetery in Newtown N.S.W. where her great great grandfather is buried. He died in 1854. She recalls family history when I remind her. I might remind her about Grandfather Dawson, then she'll remember the name of Grandmother. We visited the cemetery and then walked around the area where he lived to see all the interesting old buildings. Here are some of our pictures.

Mum with G.G. Grandfather's headstone

This building was once a grocery shop owned by one of our ancestors in the 1890s.

The Aged Care Facility

2011-06-14T17:02:00.003+10:00

I took these photos today so you can see what a nice place the aged care facility is. It has a small kitchen and a spacious bathroom.

Mum hates it.

A problem with beds

2011-05-27T08:37:00.008+10:00

Sometimes I think I really shouldn't take her on holiday ever again.

Back in her room she's scribbled nasty notes all over the instruction booklet of her new TV claiming that men keep coming into her room and taking things. If ever I have to sell the TV it will be embarrassing handing over the booklet and with modern appliances you can't even use them without that booklet. I keep removing pens from her but someone gives her pens. I have taken away everything I possibly could to keep it safe from her scribbling and I've hidden the TV booklet.

She keeps taking the pictures off the walls. I wish someone would go into her room when she's in the act of doing these things and tell her to stop. I put the pictures back, she takes them down. Now she's scribbled on the back of the pictures as well. I can see a time coming when the pictures will have to go.

She also keeps packing things. I take away any bags, then she manages to get a grocery bag off someone. I wish the other residents would not give her grocery bags and pens!

When I told the head nurse I was taking her on the plane to Adelaide and then to Kangaroo Island and so on, she was alarmed. She said Mum would revert to the packing behaviour and wanting to get out of there. I was annoyed that she said that but it's true to some extent. So what are you supposed to do, leave your elderly relative in the nursing home and never take them anywhere? Mum loves to travel and I promised her we'd keep travelling when she moved into Five Islands Court, but it's getting too hard.

When we were staying with my daughter she was in the middle of moving house. She was moving into Defence Housing, which is cheaper rental, while her fiance is serving overseas, so there was no-one to help except me.

Defence Housing were to move her in one day, but they misjudged and weren't able to do it. As a result they had to put her up in a motel for the night.

During the travelling back and forth between the two houses, Mum was extremely disorientated. She thought the first house belonged to me and she kept asking me why all my furniture was being taken away. She didn't like the new house at all and said she wouldn't stay there. She wanted to be taken back to the first house. We had to keep telling her over and over what was going on and it's hard on the nerves. I don't know how many times I said, "Loretta is moving house Mum, she's going into Defence Housing."

So Loretta had a motel room with 2 beds. We paid extra to have a portable bed taken in. It was a bed suitable for children. I am quite heavy and if I'd tried to sleep on it I might have broken it, so Mum had to have the portable bed.

She didn't like it. She said she 'always' had the bed by the window in motels. This is not true. She told my daughter she had to give me the queen-sized bed because that's the bed that I always had. I told Mum I was happy with the single bed and as it was Loretta's room and she'd in effect paid for it she should have the big bed. We explained it over and over but it wasn't sinking in. Sometimes she can form new memories if she's told something often enough, but this bed thing was too much for her to take in.

We tried to get her to have a shower. She swore blind she'd had one this morning. We both pointed out we'd been with her all day, every second, and we hadn't seen her have a shower. She was furious - as she always is when showers are mentioned. She was quite clever how she shifted the focus from "I had a shower this morning" which she must have then realized wasn't true, to "You think I'm dirty. You think I never shower. Well, I'm NOT having a shower. You can't make me." By this time, her hair was greasy and dirty from not being washed for several days. My daughter pointed out that she needed to wash her hair. She said she never washed her hair at night, she always had morning showers. The truth is, she's never had morning showers in her life. We did try the positive "You'll feel nice and squeaky clean and sleep better after a shower" line but nothing was going to work so we gave up.

Her focus then shifted back to beds. We managed to get her into the portable bed, where she continued to complain. We went to bed ourselves and turned out the lights, but soon after, she was up, turning on the lights and demanding that I get out of the single bed by the window and let her have it and that my daughter get into the portable bed and let me have the queen-sized bed. She kept repeating that she had paid for the room and therefore she should get the bed she wanted. We couldn't convince her that it was Loretta's room.

You may think we should have just let her sleep where she wanted. But she'd have soon noticed that I was on the queen-sized bed with my daughter, as neither of us could sleep on the portable bed, and that would also have made her angry.

This went on all night. She'd get into bed, then get up again and start tormenting us about beds and whose motel room it was. She said my daughter was awful not to give me the big bed.

Poor Loretta. She had to go to university at 8.30 a.m. the next day. But none of us had had any sleep. At 5 a.m. she sat up in her bed and started to cry very loudly, saying, "I can't stand it any more, I can't stand it!" She was crying so loudly I told her to please be quiet as she'd have been waking up the people in the rooms on either side of us. Mum went to comfort her and put her arms around her and she shouted "Get away! It's all your fault!"

I told Mum it was time to go down to the dining room for breakfast. I wanted to get her out of there so my daughter could get a little bit of sleep before going to university. I asked her to get dressed. She just got angry and said "I'm not leaving Loretta here in this state! We have to stay and look after her!" I kept repeating that Loretta needed to be left alone to sleep. I gave Mum her clothes and told her to put them on. She wouldn't. It went on for at least 30 minutes while Loretta continued to cry. Finally Mum put on her clothes, doing so infuriatingly slowly and deliberately as I've seen her fully dressed in less than three minutes. I took Mum down to the dining room and we stayed there for three hours.

It was absolutely awful. I hope this gives people some insight into why some residents of nursing homes never get to go anywhere!

Mum on holiday

2011-05-25T12:19:00.006+10:00

We had a great holiday really. We went to the outback and lots of other places. Mum is only ever really happy while out driving in the car. I had to watch her every second of the day to make sure she didn't get into trouble, make things disappear or hurt herself. It's easier to watch her while she's in the car. She's strapped in and can't get into much mischief from there.

Here are some of our holiday photos.

Nearly going crazy

2011-05-25T11:55:00.003+10:00

I woke up yesterday morning after coming back from a two week holiday with Mum to Adelaide feeling like I would have a nervous breakdown. I am having trouble coping with all kinds of things. My car needs repairs and I just CAN'T ring up and make a time to bring it in. Boxes of Mum's china and kitchen things are strewn throughout my house which looks like a Chinese brothel, as my grandmother would say, and I just CAN'T even tackle one of those boxes. I need to go to the optometrist. I made an appointment 3 weeks ago and missed it due to extreme stress and inability to focus on anything (with my brain, not my eyes). I need to take Mum to the skin clinic. I can't motivate myself to get an appointment for that either. I feel like I'm falling apart. I guess all carers feel like this at times but it's awful, and frightening. I avoid doing anything by playing Farmville. It calms my mind and makes all my troubles go away. It is absolute hell watching your mother in effect, go insane.

Picture: Farmville

Strange goings-on at the nursing home

2011-05-25T11:47:00.004+10:00

When I got to the nursing home today, Mum had a green grocery bag packed with:

*a picture of her cousin Jack Luke in uniform, 1943
*someone else's crocheted rug
*a pair of pyjamas
*spare undies
*socks
*the nursing home's washer & hand towel
*the key to the china cabinet which I thought I had put out of sight very high up on a cupboard where she couldn't reach it.
Evidently she's stood on something to get the key. That's very dangerous: why didn't someone notice?

The bag was tied in a knot at the handles. She denied having done it. She said men had been in her room and had packed the bag.

Then she said she thought the china cabinet was cracked. It might be, but I can't find the crack. However I did find a trail of blood down the front of the china cabinet
so she's definitely cut herself during the day.

The china cabinet doors were tied up with a hanky. I asked her why and she said "That woman's boyfriend came in here and got into my china cabinet. He wants my things.
You have to take them all to your place." She also demanded I take two large ornaments and some smaller ones from the top of the kitchen cupboards. I refused to take them. I don't have the room. But I'm starting to understand why some residents' rooms are completely bare. It's not that their sons & daughters are too mean to bring things like books, pictures and ornaments - it's that these residents are causing huge problems with these things.

The lady who is Mum's friend does not have a 'boyfriend'. None of the men in the area have dementia and they certainly don't go into Mum's room.

In the bathroom, she'd put a box of photos next to the sink. In the box, on top of the photos, were:

*toothbrush
*toothpaste
*hair brush
*2 bottles of perfume, lids missing
*soap
*shampoo
*hand cream (2 - none with lids)

When she wasn't looking I put the bathroom things back in the bathroom cabinet & put the photo box inside the wardrobe.

All her family photos were taken down and piled up on top of the wooden bureau. They were very neatly piled up there. Very strange.

On the window sill were all the towels from the bathroom - four of them. They were tucked in around the glass. I asked why and she said there was a nasty wind coming into the
room from the glass which wasn't properly sealed.

I told her that her window was wide open and closed it, then put away all the towels.

When I got home a nurse rang. He told me Mum wants credit put on her phone. I explained to him that I keep delaying doing that, because $15 goes down the gurgler within 2 days
as she rings me incessantly, waiting for the call to go through to the message bank but never leaving a message. Calls are free but the message bank isn't and this is what drains
the phone credit very fast. I said there is no signal for mobile phones in Port Kembla so it's no use her trying to ring me here. That's why the phone is always turned off when I'm home.
The nurse said he'd explain that to her. I will put the $15 on her phone, but it's such a terrible waste of money. I tried to give him the hint that I don't WANT 50 calls every day. That's one of the main reasons I decided she had to go to Five Islands Court - her persistent calls and demands which were slowly but surely driving me to the brink.

Ah well. I wonder what I'll find tomorrow.

I think she'll have a terrible accident in that room. I've taken away the china cabinet key, but she'll forget and try to climb up on the cupboard again. I think due to her craziness in imagining people after her things and packing bags, she'll do something really stupid like climb up there, fall and break something.

I'm surprised that the only damage she did to herself today was to cut herself given the mischief that she's been up to. Everyone went on a bus trip which she refused to go on, so she was probably left to her own devices with only one nurse on duty. No doubt she planned it that way.

Here she is on a recent visit to her grandchildren in Adelaide, 1400 kms away. On the farm where they live is this gorgeous old house.

Not her favourite vacation spot

2011-04-08T10:13:00.004+10:00

It's been a very harrowing week. On Monday Mum was transferred from Coledale Hospital to a low-care facility where she had been offered a bedsitter room. Coledale Hospital had assessed her and decided she only needed low care but on arrival at FIC (the facility) she misbehaved very badly. For the first two days she tried to escape and succeeded because the area she is in is not a locked area. It's really not for dementia patients although some of the people there do have some memory problems.

She went around the side of the building and found the driveway, went out onto the street and started walking. Then she realized she didn't have a clue where she was and a woman out in her front yard noticed Mum was completely bamboozled and took her back to FIC. I don't mind her going out walking in areas that she knows well, on her own, but she would get lost in areas she's not used to.

NOTE: November 2011: This behaviour did not continue. This is the last time she ever tried to escape. She settled down after this and no longer tried to get to the driveway.

From that time, the nurse in charge ordered that a record of her whereabouts be kept and they had to write where she was every 15 minutes. This is extremely inconvenient for them and as the nurse said, "This is not behaviour we see in House Two."

I was there the first time she had lunch and she was rude and nasty to the gentlemen at her table. One of them asked how she was and she said very angrily "Not good and I don't want to talk to you. I don't want to be here and I'm not staying here." She's been like this all week. These people, as I said, do not have dementia so they are quite capable of being very offended by her nastiness.

The nurse asked me to come in and talk to her. She said Mum was not settling in and was an escape risk as House Two, as it's called, is not a locked unit. It's for people who are happy to be living there. Mum had previously inspected the unit and stated that she loved it and would take it. So she was there quite voluntarily, but of course she has no memory of ever saying that.

I was very upset because in House Three they are not allowed to have a jug or a fridge.I didn't want Mum to be living in a nursing home when she's still capable of enjoying making herself a cup of tea and watching television.

Last weekend before she moved in, my son and one of his friends had helped me move in some of Mum's furniture and treasured belongings. I spent a good two hours arranging her things in the china cabinet really nicely. I put away all her clothes. I looked forward to visiting her there, choosing curtains, going out to buy a fridge and a new TV. The way she is, I wouldn't dare take her out in the car. She'd certainly refuse to go back there.

Throughout the week Mum has continued to be unco-operative, unfriendly and downright rude. She keeps going outside without letting anyone know where she is. She's lost all the time and someone always has to take her back to her room. She gets lost just walking to the end of the corridor. She didn't get lost at Coledale Hospital - she soon managed to find her way around. I think she's deliberately getting 'lost' so they'll send her home to me, which isn't going to happen. I can believe she'd get lost out on the street because she doesn't know the area but she should be able to find her way from her room to the dining room and back by now.

I have tried visiting her a couple of times but she says things like "Get out, I hate you and never want to see you again." "I am calling Roger and going up to Queanbeyan to buy a house." "You have dumped me here. You are nasty." "This is a nursing home and I'm not staying here. I'm going to call my solicitor."

FIC is really nice. It's the newest residential home in the area.

By today, Friday, she had become a little less combative.

I went there today after work and after spending 2 hours ironing still more name labels on her clothes and she was sulking, lying on her bed. As soon as I got in the door she said "Get out! I hate you." I noticed she had found a few photos of me and ripped them up. I just left right away, dumping the clothes on the floor. I have been through hell looking after her the last three or four years and the last thing I need is to go and visit her and just get abused and accused of being cruel and nasty.

If this is how many of these dementia sufferers treat their families once they have moved into care, I'm not at all surprised that some of them never visit again. I certainly don't feel like visiting her. She's caused me terrible trouble over the years. But at least I have that sense of duty, unlike my brother and his 21 year old daughter, who even bother to find out what's happening to her and believe her story that she has her 'own flat' and is 'fine'.

Update November 2011: They still have never visited. Phone calls are around three per year.

I've found the most beautiful place for her to live safely and have company and outings and she hates it.

In stark contrast, Dad's sister, who's the same age as Mum and went to school with her, asked her family to find a nice facility for her. She had had a couple of falls at home and realized she couldn't expect her family to come running every five minutes - unlike Mum who would demand my constant presence and attention even before the dementia set in. She's in one further south which sounds a lot like the one where Mum is. She has a bedsitter room too and she told me on the phone the other day she's never been happier. She has friends there, she loves the outings and she loves getting visits from her family. She's looking forward to selling her house and land so that she can enjoy some of her money by going on holiday and buying things for her six children and dozens of grandchildren.

I've really had enough of Mum, she's so awful and she's ruining her chances of staying in the lovely bedsitter unit. I told her that she would be moved to the nursing home section if she kept running off and being nasty to people but she just said they couldn't do that to her and she wouldn't go there. She seemed to think if she misbehaved and lost her unit they'd put her out on the street and I'd have to take her in. I told her on the phone in no uncertain terms that they won't put her out on the street, they'll transfer her next door and she won't like it there.

I've also had her cousins call her and plead with her to behave, but she just repeats to them that she hates it there and won't stay.

So, if she ends up in the nursing home at least I've done all I could to prevent it. Coledale Hospital nurses are quite shocked at the change in her behaviour; they said she was lovely up there, co-operative and friendly, but I think that was only because she saw the hospital as something very temporary, expecting to be taken back to my place after her stay. They had sent a report to FIC stating that she was a lovely lady who'd fit in well at FIC.

I haven't put any credit on her mobile phone, either, which is making her extremely angry. My cousin called me and said Mum said to ask me to put credit on the phone so she can ring me. I told my cousin I won't at this stage because I can do without abusive phone calls. When she was at home she was ringing me 150 + times every week. It was hell - just constantly demanding attention. She did have credit on the phone when she arrived at FIC but she used it all up in about an hour, ringing me again and again when I was at work and unable to pick up the phone. She let it ring until it went to Voicemail and then each call cost 50c. She never left a message as she didn't realize it was Voicemail - thank goodness for that. Two years ago I had the voicemail cut off my home phone as I'd go to listen to my messages and hear things like "Why aren't you over here? Where are you? You hate me and I don't want you coming to my house ever again." This was when she lived in her own house. The nasty messages would be left when I was at work or busy doing important things. She'd leave nasty messages well before she had dementia, but after dementia arrived they got more frequent and much worse.

I have had an awful time trying to pack up Mum's house. It is just so cluttered with all kinds of things and paperwork going back 100 years, some of which belonged to my grandparents. Sorting it has been a nightmare. I have had to decide what goes to the Salvation Army, what goes to my brother (I'm sending 4 boxes of stuff up to him by courier next week so he can't say he didn't get anything of his mother's) and what I need to keep at my place. I've had to sell the furniture and that's been a terrible nuisance - some people said they'd buy things and then never turned up. I have spent up to 6 hours a day over there trying to pack up for the last 4 weeks and I still haven't made a lot of headway. The house has to be vacated by next Thursday for the new owners.

So that's the situation. I've done my best but apparently I've failed. I've certainly failed to make her happy. I can't visit her because she's absolutely vicious towards me. I don't know what will happen next. Maybe I should start to enjoy my newfound freedom after years of being a slave to her and not feel guilty.

Get me out of here, I hate it!

2011-04-05T08:55:00.002+10:00

Moving Day finally arrived yesterday. I had already set up Mum's bedsitter unit at the nursing home really nicely with all her family photos and so on, as well as her china cabinet and an antique dresser that she loves. I spent hours and hours on it. But people with dementia have no understanding of these things and no idea the extent of what you try to do for them.

She was absolutely furious when she saw the unit. She started shouting "I'm not staying here, take me home!" and other horrible things such as "Well, I'm sure you're happy now you've managed to dump me and get rid of me." "I'm calling your brother to come and get me." (As if he'd come, ha.)

I had intended to spend hours there organizing her clothes and taking her on a tour of the place including checking out the magnificant 180 degree sea views. But she was so foul and nasty I was out of there in a few minutes. I'm not stopping to listen to abuse.

When asked to go to the dining room for lunch she said "No, I'll go out to lunch every day thank you very much!" in a nasty tone of voice. I told her I was not taking her out for lunch but was going home soon. So she angrily stomped up to the dining room where they sat her next to a very nice gentleman. He greeted her and asked how she was. She said "I'm not happy and I don't want to talk to you."

Most of the people in this section either don't have dementia at all or have very mild dementia. Mum was able to mostly mask her symptoms during her time in hospital so no-one has seen her acting like this before. In fact, she only got into this unit because they did another 30-question dementia test at the hospital and she got 26/30, which is normal for someone her age. The dementia quizzes are useless for Mum. It's her weird, paranoid behaviour that is more the problem, not her knowledge of various things. For example they asked her the name of Italy's president during World War 2 and she not only answered correctly but added a number of facts on fascism. This is an indication of her former level of intelligence and I don't believe these 30-question dementia quizzes are any use for people who were formerly near-geniuses; their intelligence level has certainly dropped but it's still nowhere near below normal.

She was to have gone into the next level of care, based on my observations of her behaviour which I told the doctor about. However, somehow she knew she had to behave herself at the hospital and put on an act of normality and she pulled it off and as a result she's really at a level of care that's not high enough for her. If she's not watched when showering, she'll just turn on the water and not even get under it then put on the same clothes she's been wearing for a week, including the dirty underwear. When I asked her at the hospital why she was putting on the same underwear all the time she said it was because I hadn't given her any other underwear, whereas there were ten pairs in the drawer. She never thinks to look in drawers for underwear - she just decides there's none there and that's that. And it's no use me telling her the underwear is there - within seconds that fact has gone from her memory.

I hope she manages to stay in the bedsitter unit. The next level is a single hospital-style room with no space for her own furniture. But if she keeps being nasty to people she won't get to stay there, that's for sure.

What sister in law?

2011-04-05T08:49:00.002+10:00

We were at Austinmer Beach the other day when I saw Mum's sister in law and her family. As I headed over to talk to them, Mum said "I don't want to talk to those people, I don't know them." I said, "It's your sister in law, Pat. You know Pat, Dad's sister!" She said "No I don't know any Pat, I didn't know I had a sister in law.'

This is very worrying. It's the first time she hasn't recognized someone.

Over the past 4 months or so, she has got her two cats mixed up. She'd pick up a cat and say, "What's this cat's name? I forget." So I had to start telling her the cats' names. Then she'd keep asking, "How many cats have I got?"

On the other hand she remembers the most amazing things and would blitz the Coledale Hospital's Trivia Quiz every time.

Four months later...

2011-04-03T03:18:00.002+10:00

I've been too exhausted to write anything since December. Things certainly got a fair bit worse over the last few months. Finally I asked the GP to refer Mum to a psychiatrist specialising in problems of the elderly. The psychiatrist put her in hospital in February. After observing her for several weeks and listening to what I had to say he said he believed it was too much to expect me to take care of her in her own home. As for possibly taking her to live at my place, he could see that causing huge problems too, due to her night-time obsessive cat-hunting habits. No-one can do without sleep.

He's about the only psychiatrist I have ever liked or trusted. He did not prescribe drugs. I'm pleased about that. He approved Mum's supplements, too, and instructed the nurses to continue giving them to her. Most doctors have no time for vitamins and so on. Mum is trying the new Turmeric capsules. I've read the neurologists in India are very hopeful they can slow the progress of dementia.

So she's been in hospital for a long time. At times she gets very angry and demands that I take her out of there. She was lucky to get a place in a nursing home near me. She'll be in a bedsitter-sized unit which is very nice and help will be on hand when she needs it. They'll make sure she showers (something she rarely wants to do) and changes into clean clothes afterwards. It will be a huge relief but the caregiving won't be coming to an end. I'll need to visit her every day and bring her to my house to visit her cat. I'll also be responsible for taking her to her G.P., dentist, podiatrist and so on.

Here she is in hospital being visited by my daughter and her fiance. They are so kind, but they live 1400 kms away, so I can't expect them to be here all the time.

Packing up her house has been absolute hell: 60 years' worth of accumulated stuff and I have to check every item to see if it's something important or historical that can't be thrown out. As well, she has most of my grandmother's possessions and paperwork so I'm really dealing with nearly 100 years' worth of stuff.

I believe these last few months have taken years off my life. I don't feel well any more like I used to. I get tired and exhausted.

Today I took a china cabinet and a sideboard to her new room and set up all her china nicely. She moves in on Monday.

I hope she doesn't get angry and hate it there.

The latest, but not the greatest news

2010-12-07T19:17:00.004+11:00

This is an email I sent all my friends/relatives today.

Dear all,

This is another lazy update. I am just so tired from running around after Mum that I can't write individual emails.

Mum has got a fair bit worse in the last few weeks. Her carer who comes every day says she has noticed this too. We have noticed her spending a lot of her time
going in circles searching for the cat. She'll find the cat, return to the kitchen and then say, "Where's the cat? I don't know where it is," and go looking for it again.

The cat is very old and never moves off her bed these days, so it's always in the same spot.

Unless someone breaks the 'Where's the cat" cycle, it could go on for hours. Though occasionally, it changes to 'Where's my handbag?' and that is usually followed by
paranoid ideas about people coming into the house and taking it.

I'm having to spend more and more time just supervising her to stop these things happening and to stop her doing silly or dangerous things around the house.

She always accuses me of not feeding the cats, but their bowls are always full of Science Diet. Even when shown the full bowls, she claims they're not full enough and I am cruel to the cats and trying to starve them.

Taking her out in the car is the best way to stop these silly notions. She likes to go out. But it means I have to spend most of the day driving around or wandering around shopping
centres with her. She has endless energy but I do not.

The last couple of days she's refused to sleep at her house, insisting on coming here. We are not too excited about this idea, because in the past she has sometimes spent the whole night looking for imaginary cats that are 'outside in the cold', 'lost', 'in trouble' or 'getting run over by cars'.

I warned her if she starts that nonsense I am taking her home and so far, so good.

If she's at home at night, she believes there are men on her back porch. They are not breaking in, they are just standing there talking. One of the things they say is, "This is silly, I'm going now." Apparently they say the same thing every night.

She barricades the back door, tying string around the handles and around the legs of tables, then stacking things up against the back door. She then closes two more doors, putting chairs up against them.

You can't tell her there are no men out there every night, it's a waste of time. You can't prove to her there are no men by going out there at night and shining the torch. She'll say they've just left.

The only time she is reasonably happy is when she is away from the cat and the house.

There was very bad news following the removal of a breast lump. The lump was Stage 1 invasive cancer. Next Thursday she goes to Wollongong Hospital to get the lymph nodes tested and some of them removed. A drain will be inserted afterwards. I've asked the doctor to keep her in at least one night and he's promised to transfer her to the private hospital if things are looking a bit grim. I told him I just can't manage on my own.

After that there will be radiotherapy every day for 3 weeks - right over Christmas! We didn't need this.

I will be very surprised if all these awful things don't bring on a stroke and kill her, but then, people can be very resilient. She may well live for several more years. However I am preparing for the worst.

She really wants to go back to Townsville for another short holiday so I might try and organize that for this weekend if I can.

My brother and his daughter have not contacted her. It has been 11 months now since they bothered. She is very upset over this. I expect though, with her memory worsening, she may even forget she has a son, or forget that he hasn't been here recently. The other day, she forgot the name of the cat, and I think that's a very bad sign. However, she still knows all of her other relatives, even those she hasn't seen for years and she knows who's dead and who's not.

She is starting to think Patrick is her son though. She told the estate agent the other day that her 'son Patrick' had done some work in the garden. She also calls my daughter her daughter as well at times. Patrick would have made a much better son than the real one - he's a total disgrace.

So for the foreseeable future we will be dealing with the cancer and its treatment. I hope to be able to take her on some more short holidays since that's the only time she seems happy and not in a terrible state over things she imagines are 'lost' or 'stolen'.

It looks like I'm stuck with her sleeping over here. Having a break from her for 12 hours or so was a big help but she hates her house so much and is so terrified of these no-existent porch-dwellers that I doubt she'll agree to sleep there again unless I stay there too.

If the house gets sold I suppose we'll go ahead and build the granny flat though there's a bit of doubt whether she'll live to see it or enjoy it for long.

I still can't stand the thought of a nursing home. This might change if she takes a major turn for the worse as I can't let my own wellbeing go downhill from looking after her. I am just constantly tired and exhausted.

NAAAOW, I'm not going to that Christmas Party. Where's me cat?

2010-11-22T09:38:00.006+11:00

Oh boy, it was fun getting mum to the Anglican Retirement Christmas Party. I hadn't intended even to tell her it was on because the first time it was mentioned back in October, she'd been so violently opposed to the idea.

Anglican Retirement are the government-funded group who do Mum's in-home care every weekday. Mum's carer, Tracie, really wanted her to go to this party.

But Tracie still hasn't learnt you don't tell Mum ANYTHING. She just panics over it and gets paranoid. The day before the party, Tracie was asking Mum if she remembered she had to go to the party. Since Mum knew nothing about it, Tracie thought I must have forgotten, so she asked my son in Mum's presence to make sure I was bringing her.

All this talk of bloody horrible Christmas parties reinforced the idea in Mum's brain that there actually was a party happening. When you want her short-term memory not to work, it works perfectly. And the memory of the coming torture-party was still there the next day.

She was on the phone to me saying, "I'm not going to that Christmas party! NAAAAOW! I won't go there! If you take me there, I won't get out of the car!"

I said, "Mum, I don't know what you are talking about. I think I have to go to work today, I'm just waiting for a phone call."

She seemed happy about that. Of course, I had already decided I was NOT going to work due to the Christmas party.

So Mum assumed I was at work and somehow managed to REMEMBER I was at work and did not call again.

At 11 a.m., I went over to her place and knocked on the door. I said, "I'm finished work early - do you want to go out for lunch?"

Thankfully, all thoughts of the Christmas party had vanished from her brain. She got her coat and bag (she wears a coat even in summer) and off we went to the venue, which looked something like the club where we always have lunch.

She didn't even notice we were driving south instead of north. She never does know where we are going any more.

When we got there, I took her in the lift to the function room. She complained and said she'd never noticed a lift in the club before. I told her there'd been alterations and extensions to the building.

When you have someone with Alzheimers you just have to lie sometimes!

We got out of the lift and there was Tracie, sitting a table handing out name tags!

"What are you doing up here?" I asked her. "This is where the Christmas party is!" she replied. "Christmas party? What Christmas party?" I said.

Mum looked very confused and unimpressed.

"Oh well, Mum, now that we're here, we may as well stay. The food is free at least."

So she put on her name tag and agreed to sit down. Then she actually managed to have a good time. There were Christmas carols by Sing Australia and the food was great.

But getting her there made me a nervous wreck.

Why Mum isn't on Namenda or other medication

2010-11-10T17:53:00.002+11:00

People have asked why Mum isn't on the 'standard' medications for Alzheimers. Firstly, I haven't been able to find any doctor willing to say that she has Alzheimers. As you might know, it can only be positively identified after death if there is an autopsy. Apparently these medications are not 'standard' for suspected Alzheimers here in Australia. And it can only ever be 'suspected' Alzheimers as there is no test for it. The one specialist I approached told me the side effects are 'far too dangerous and risky' particularly for someone like my mother who has chronic renal disease and blood disorders. I have some Valium for her to take occasionally when she's extremely agitated and this works well, as does a shot of medicinal brandy at night when things are bad. If you check out the info from the drug company itself regarding Namenda it is fairly scary:
Namenda may cause some side effects. Some of the milder side effects may include joint pain, weight loss, anxiety, rapid heartbeat, nausea, vomiting, swelling of the hands or feet, weakness, dizziness, fatigue, swelling around the eyes, frequent urination, aggression, constipation, diarrhea, loss of appetite and being easy to bruise or bleed. (THESE ARE CONSIDERED MILD?!?) Some of the more serious side effects may include hallucinations, seizures, confusion, sudden numbness, chest tightness, problems breathing, fever, fainting, blurred vision, lack of coordination and less-frequent urination.
I am desperate enough that I would allow a doctor to prescribe these things at this stage but the fact is, they won't. There is a lot of suspicion in Australia that these drugs can kill people.
Mum has never taken pharmaceutical drugs. She's always been opposed to them. My own view is they're mostly poisonous to the system. I know if she was in her right state of mind, she'd say no to Namenda.
I would say no, too, and have instructed my children that when this disease strikes me down - and it will - I do not want to take these medications in any circumstances, nor anti-depressants.

Charles Bonnet Syndrome and Visual Hallucinations

2010-11-10T15:25:00.005+11:00

Picture: Charles Bonnet

I want to write about this syndrome as it is not very well known. I had occasion to take Mum to the Sydney Eye Hospital the other week - one of the best in the world. The specialist asked if Mum had hallucinations. I was really surprised.

Charles Bonnet Syndrome is characterised by the presence of complex visual hallucinations seen by people who are vision impaired, for example, due to glaucoma or macular degeneration, both of which Mum has.

The condition was first described in 1769 by Charles Bonnet, a Swiss naturalist, who documented it in his 89-year-old grandfather, who was nearly blind from cataracts in both eyes, but perceived men, women, children, carriages, buildings and tapestry patterns.

The syndrome is portrayed in the book "Phantoms in the Brain" by V. Ramachandran and in "Sacred Games" by V. Chandra. It is thought that James Thurber, American author, may have derived his extraordinary imagination from this syndrome. Thurber was accidentally shot by an arrow in one eye when he and his brother were playing William Tell.

The hallucinations commonly involve detailed images of people, buildings, patterns or straight lines (not an unfamiliar scenario if you're young enough to have lived through the '60s!)

The experience can be pleasant if the sufferer understands what is causing these hallucinations. But for a person with dementia, the hallucinations can cause distress and fear; or the elderly person may believe there really are people in their house or garden. Younger people with Charles Bonnet Syndrome are aware that these images are not real.

Charles Bonnet Syndrome can affect people with significant vision impairment of all ages. However it is more common in those who lose their sight later in life. The condition appears after a period of worsening sight and is most common in people with macular degeneration.

Sometimes the hallucinations stop within a year to 18 months.

There is no cure or treatment for this syndrome. However it may be useful to discuss it with elderly relatives who are seeing people who are not there. This explanation may put their minds at rest.

Mum was seeing people outside her bedroom window, shadows of people on her bedroom wall and intruders in the garden.

Although she has quite advanced dementia, I was able to tell her these things were caused by her macular degeneration, which is a lot easier than trying to argue about it logically (waste of time), accusing an elderly person of imagining things or telling them they have hallucinations caused by dementia.

Many of the hallucinations suffered by elderly people with dementia may in fact be caused by worsening vision.

Things are getting worse.....

2010-09-09T08:26:00.002+10:00

A few weeks ago - or was it a few months? - Mum stopped being able to recall what day it is. She takes vitamins - no pharmaceutical medicines - and I got her one of those plastic pill boxes with the days of the week on it. I also bought her a little red box that has a button that you press and it says, "It's Thursday, 9th September, 2010 and it's just past three o'clock." This came from the Blind Society. It's been a huge help and has prevented many a phone call to me to ask what day it is. It cost around $200, but it's worth every cent.

The last few days, though, I've noticed she no longer knows what month it is. She'll start talking about something she recalls such as the birthday of her brother and she'll say "I was thinking about him because his birthday is coming up this month." Her brother's birthday was in February. This is September.

Quite often, she'll be out shopping and say, "I want to buy something for Loretta for her birthday. I'll have to send it soon or it won't get there on time." Her birthday is in May. And this is September.

I've learnt from the marvellous Alzheimers Reading Room not to contradict her when she gets the month mixed up. I just agree with her and change the subject. That way I don't offend her or make her frightened that she's 'losing it'.

Having the box that tells you what day it is doesn't help with the cat food. I put out the cat food for each day, label it and leave it in an obvious place on the kitchen cupboard.

Every day when I go to her house, that day's cat food is untouched, but she has walked down to the shops and purchased as many tins of cat food as she can carry and carted them home. The cat food she bought has been opened, sometimes nine or ten cans of it, and left all over the place. There'll be bowls of cat food in the bathroom, bedroom, kitchen, dining room and laundry. There'll be opened cans in the cupboard which have to be thrown out and more open cans in the fridge.

If I have to go to work, I'll get calls in the mornings, "There's no cat food in the house!" I'll tell her to walk to the kitchen with her mobile phone. I'll say, "Look right in front of you now. Reach out your hand. The cat food for today is right there on the cupboard."

She can't see it. It's not an eyesight problem, her sight is bad, but she can see a can of cat food. She could also reach out and feel for it, but she won't do that. She won't try. In her mind, I am trying to kill the cat by starving it to death.

If I'm not working, I go over there and feed the cat. But if I am at work and she can't or won't try and find today's cat food, there is nothing I can do to stop her going to the shops and getting more, then opening all the cans she has bought in one day.

I really don't know what I am going to do about this. It would be better if I brought the cat to my house, but she would be too upset.

If anyone has suggestions I'd appreciate hearing them.

The neighbour says I'm imagining it

2010-09-09T08:09:00.003+10:00

I feel so annoyed and frustrated with people who've never dealt with dementia. This week has been a nightmare. Due to a badly leaking tap washer that had to be ordered and takes five days to get here from Melbourne, I've had to go and turn on the water in the mornings for Mum to have a shower, then turn it right off again, or all the hot water would run down the drain and the cost would be terrible.

I found someone to fix the washer, but the neighbour doesn't approve of the man. He spoke to my mother while I was at work and convinced her not to let him into the house. My mother agreed because she'll agree to anything someone else suggests. This neighbour plans to ring a plumber for Mum. That will cost around $200. I'm trying to sort the matter out.

I said to the neighbour, "My daughter has Power of Attorney and she makes all decisions on maintenance and money, and I have Guardianship so I make the decisions on Mum's care."

The neighbour replied, "There's nothing wrong with your mother. She comes up here to visit us and talks to us perfectly normally. She knows why the water is off at her house, she understands it's the tap washer. You and your daughter don't have the right to make her decisions. She can make her own decisions."

What can you say to someone like that! Every day, I get dozens of calls from Mum. "I haven't got any water." "I need to ring the Water Board, my taps are not working." "Everything is broken in my house, the toilet is broken, the taps in the laundry and the kitchen are all broken." "I need to call a plumber and get all my taps fixed."

The information, "The tap washer is broken. It's a special one that's been ordered and will soon be fixed" does not stay in her head for more than 30 seconds.

When the neighbour spoke to Mum, he would have said, "Your tap washer is broken" and she would have replied "Yes, I know that's why the water has to be turned off", because the neighbour had reminded her of what was wrong. If he'd asked her 2 minutes later, "Why is the water off at your house?" she would not have had a clue. She can only respond sensibly to such questions if the questioner has either given her the correct answer or given her enough hints so she can respond with the correct answer.

Those who have had to deal with someone who has Alzheimers will know exactly what I mean. They can present such a good front to others, they can have good conversations and not get confused depending on what subject is being discussed, they are experts at avoiding subjects they know will trip them up.

And they make it look as if you, the carer, are just trying to get a perfectly well elderly person into a nursing home for your own advantage.

Outsiders have NO idea what is going on.

Attacked over cat food

2010-08-11T18:16:00.006+10:00

What a horrible day. I left Mum at the doctor's at 8.00 so I could go to work and she could get the bandage on her leg changed. The doctor is situated in the Westfield Shopping Mall.

I knew she would probably buy unnecessary cat food while she was at the shops. I wasn't worried as I just hide it once I get to her house and put out only the cat food for that day to save wastage and attacks of paranoia resulting in six full bowls of cat food appearing in various parts of the house. Then she chocks open all the doors with chairs in case an earthquake happens and the cat is trapped somewhere that it can't get to its food.

When I got back from work sure enough, she had bought more dry food. We have the Science Diet from the vet and the vet has told her twice not to feed any other types of food with it to ensure a balanced diet. So I've been putting the Science Diet into plastic containers labelled with the day of the week. That has been going all right for a few days.

So I got rid of all the excess bowls of dry food (about five bowls full to the brim) and then had a look in the fridge. In the fridge there were SIX CANS OF EXCLUSIVE-BRAND TINY TINS OF GOURMET CAT FOOD WHICH ARE $1.90 EACH and each can had had one teaspoon of cat food removed from it, then wrapped in a sandwich bag and placed in the fridge. SIX CANS IN ONE DAY. Thats $11 or more depending on where she bought the gourmet cans. When the cat wouldn't eat a teaspoon of the food, she's opened another can, then another, then another because she gets this idea into her head that THE POOR CAT IS STARVING and she HAS TO FIND A WAY TO ENCOURAGE IT TO EAT, so if it doesn't eat the first flavour, she opens another one. It's just another type of paranoia.

So I got all the cans out of the fridge and asked Mum to sit down at the table and we would talk about cat food. I put all the cans in front of her and I said, "You have opened six cans of cat food today which you bought down at the shops this morning. This is wasteful because in a couple of days they would have to be thrown out. This is why you have to let me look after the cat food and organize the feeding of the cats." (it was CAT, but she has stolen a neighbour's cat by enticing him with gourmet cat food. The cat's owner was very angry at first but she's just given up the fight to keep her cat and no longer worries about it).

I reminded her that the vet said not to give the cats any other type of food apart from Science Diet. I reminded her that we don't need tins of cat food any more because we have SCIENCE DIET FROM THE VET and we are following the VET'S INSTRUCTIONS.

I said all this very calmly and SLOWLY as people with dementia don't like others saying or doing anything quickly. Then I said, "I will take these wasted cans of cat food home to my cats to get rid of them."

At that point, she jumped up, an evil, angry look on her face and grabbed at my face and at the bag I was holding with her fingernails. She screamed "You are not taking my cat food off me! Get out of here! I hate you!"

Well, I have had ENOUGH of her today, ABSOLUTELY ENOUGH.

I do NOT want her living on my premises even if in a granny flat. I could not put up with this kind of thing. It is as bad as living with some poor person who has schizophrenia. In fact, the similarities between the two diseases are so obvious I'm surprised no-one has remarked about it in the past and no research is being done into whether the two conditions are linked.

I grabbed the cat food anyway and made for the door. As I was leaving, she got all maudlin. She said, "Give me a hug." I stepped aside and avoided it.

No, I am not hugging you. I don't know who you are. You are not my mother. You are a horrible, nasty, violent, insane person who has taken over my mother's soul.

Feeling very alone

2010-07-29T08:53:00.002+10:00

Over a year ago, when Mum started to get noticeably worse and need me to be at her house for hours every day, my brother was still in occasional contact with her.

He's never bothered with her much. He doesn't send her a card on her birthday, mothers' day or Christmas. He doesn't ring her up. She has always had to ring him. I don't know what his problem is with her, although he did admit once that during his child custody case, he didn't like the evidence Mum gave that my former sister in law was not a bad mother. Mum said she'd never kick someone when they're down and my sister in law had been suffering from a nervous condition.

So Mum got worse and she would tell my brother conflicting things on the phone. He took this to be 'lying' and began to dislike her. I think he decided she was turning into a 'liar' in her old age. For example, I was there once sitting in the lounge room as Mum was talking to him. He asked her if I was there. She said no. Then, a minute later, she called out to ask me something. He said, "Stop lying Mum, she is there," and hung up on her. She just hadn't remembered that I was in the house.

I have never understood why my brother won't talk to me. I don't recall ever having done anything wrong. I would take Mum to his house several hundred kms away 5-10 times every year so she could visit him, but he'd never say a word to me. I learnt to live with it.

In December Mum suffered a blackout on a plane coming home. She was taken to hospital in Sydney. She wasn't conscious. I thought she was dying. I called my brother and asked him to come. I even offered to transfer money for petrol to him so he could afford to drive the four hours to Sydney.

My brother phoned the hospital to inquire about her and they put Mum on the phone. She was by then conscious again. It's thought she suffered a seizure, something that's common in people with dementia. He asked her how she was. She said she was fine. She said, "I'm going home now, the doctor is discharging me. Don't worry, there's nothing wrong with me." He asked if she'd been unconscious. She said no. She had no idea where she was or what was happening so nothing she said was true, but he believed it.

He got his daughter to drive to Sydney instead with a view to taking Mum away from me permanently, since I was making up stories about her being sick when she wasn't. By the time she got there, Mum was sitting up in bed drinking tea. She'd been hallucinating though, and nurses had found her wandering in a corridor as she'd got lost, but my niece didn't know this.

Mum was released from hospital the next day and my niece told me she'd take Mum to my brother's place for a couple of days' break. I found this a bit unusual as he hadn't wanted her staying there ever before, but I wasn't suspicious. I let her go, though she was reluctant, not wanting to leave her cat.

As soon as she got to my brother's place, all contact with me was cut off. My niece, when I rang to inquire about Mum, said, "You are a liar and I'm not talking to you ever again." My brother and his de facto wife just hung up the phone on me as soon as they answered. I didn't know what the hell was going on.

Over the next few days I spoke to Mum quite a few times on her mobile phone. She can still use it, which is great. I have programmed it so that she only has to press down number 3 to get me, or 2 to get my daughter, or 4 for my son.

Mum had been taken to the bank to inquire how much money was in there and to get statements. As soon as I heard this, I went online to her account and transferred $3000 to another of her accounts, inaccessible by keycard, for safety. Sure enough, my de facto sister in law tried to withdraw that money, then sent me an angry email when she couldn't get the money out. She said she needed that money for Mum's 'board and lodgings'. She said I had 'stolen' the $3000.

My niece wrote on Facebook, for all my friends and other family members to see, that I was a liar and a thief and had taken $3000 from my mother.

Next Mum told me she was being taken for a brain scan. I rang my brother again to find out why. He hung up on me.

Mum couldn't remember why she was having a brain scan, so it was no use asking her. I was very alarmed by this time. She was being financially abused and taken for unnecessary tests and doctors' appointments. She said to me over and over, "I just want to go home to my house and my cat. Please come and get me."

Emails to my brother's house asking when I could collect her got no response.

I discussed the problem with several family members and Mum's friends and they all said I must drive to my brother's country town, go to the local police and ask them to help me get her back.

So this is what happened. I got Mum back home. She was very glad to be home.

I thought that would be the end of it, as my brother had no interest in Mum and had barely ever lifted a finger to help her with anything.

But he turned up at her house unannounced a few days later with his de facto wife. I had arrived to do my day's work at Mum's place and he was there. He was shouting and being nasty, telling her I was after her money and telling people lies that she had dementia. I asked him to leave. I said, "I have Guardianship and I won't have you talking to Mum like this. I want you to go."

He then assaulted me and left. I called the police and an Apprehend Violence Order was issued. What a terrible way for things to turn out. I had hoped for help from my brother with Mum's problems and this is what happened.

My brother notified police he would not accept the AVO and would contest it in court. So this happened on Monday.

It was terrible. I had to give evidence. I didn't tell lies, but they did. They had got together and concocted various stories. The magistrate saw no reason for an AVO since my brother stated in court, "I have hated my sister for 30 years and I never want to see her again, so I won't be any problem to her in the future." The magistrate accepted this.

How horrible to hear in court that your brother has hated you for 30 years.

He also said that I was telling lies that Mum has dementia. He said he had taken her to his doctor, who tested her and found no sign of dementia. He'd then got a brain scan done, which showed no sign of a problem. He told the court I was inventing the dementia in order to get control of Mum's assets.

My de facto sister in law stated I stole $3000 from Mum. The magistrate said he was going to ignore that evidence as he was not in any position to make a decision on what happened to the $3000.

They both said terrible things about me. They told dreadful lies. I didn't care that there's no longer an AVO, but I didn't like hearing those things said.

So now I am on my own. I do have my 22 year old son living with me, so that's a bit of a help. My daughter is too far away to help.

I have lost my eldest niece, I will never see my brother again (probably a good thing) and I am on my own as far as caring for Mum.

I don't understand why any of this happened. Why would my brother disbelieve me when I said Mum has problems with her memory and behaviour? I know she always managed to pull herself together and act normally in his presence.

I think he knows something is wrong and he doesn't want anything to do with the situation. He doesn't want to see Mum go downhill and so he's made up a reason never to see her or me again. He has not contacted her in six months and has changed his phone numbers so she can't ring him.

She cries all the time about it. Her grand daughter hates her too and calls her a liar as well as me. Mum has a great grandchild on the way that she will never see.

I have heard these kinds of things happen in many families after a person has been found to have dementia.

The magistrate was good in his summing up of the case. He began by saying positive things about me. He said, "It is plain to see that the defendant's mother is in need of assistance. In my experience, when an elderly person suffers from dementia, the burden is placed on the shoulders of one person, and in this case that person is the defendant's sister. It is clear to me that the defendant has done nothing for his mother in recent years."

He said other things, too, that supported me, but at the end he said that since my brother hates me and will never see me again and never intends to visit the town to visit his mother either, there is no point in having an Apprehend Violence Order.

The Cat Food Battle

2010-07-29T08:45:00.002+10:00

The battle of the Cat Food continues. Yesterday Mum walked down to the mall by herself before I got to her house. She admitted to me that she had terrible trouble finding her way out (she says this is because of her bad eyesight but I know it's more than that) and had to walk round and round looking for the exit.

So, at the mall she went to Coles and bought about 20 of those little expensive gourmet tins of cat food at $1.80 each. She also bought another cat food dish - she has 7 or 8 now.

When I arrived at her house, the old problem had happened again. I found several tins half-opened and left in the cupboard to go bad. I found two plates - not cat food plates but parts of her dinner set - full of cat food and 'hidden' by saucers on top so I couldn't find them, in the fridge. And about 4 plates of cat food on the floor in various parts of the house.

All up about 9 tins of cat food had been wasted (the cat was not hungry as I fed her a few hours before) at a cost of $16. I can't allow this waste of money to continue so I said to her, "Mum, you have tins of cat food EVERYWHERE. You have to let me take care of the cat food!"

I always say things I wish I hadn't. She didn't know there were tins of cat food and plates of cat food all over the place. She denied this and said I was making it up to make her look 'mad'. She shouted and ranted about my efforts to kill the cat by starvation because I hate the cat.

I have three cats, all shiny and well fed - but not fat.

There were a lot of nasty words said as I disposed of the excess cat food and hid the tins that were left when she wasn't looking.

Then I put two tins on the kitchen cupboard, one labelled 'WEDNESDAY' and the other 'THURSDAY', but I know I'm wasting my time, by later today she'll have opened both of them and put them on the floor, probably on plates she expects people to eat from.

I should have taken the two nice dinner sets to my house and hidden them months ago. I cannot offer them to family members now, once she has gone to her rest. I don't know which plates the cat has eaten off. I will probably just throw the dinner sets out one day. Am I being over-fussy?

Mum dies for 15 minutes on operating table

2010-07-02T21:12:00.002+10:00

Dramatic developments the past few weeks. The surgeon was going to remove her pre-cancerous adenomatous polyp. The anaesthetist misjudged the amount of anaesthetic to give her and her heart stopped. It took 9 electric shocks to re-start her heart. She was in a coma on life support. The family came to say goodbye. I took out her pre-planned funeral booklet and started to think of arrangements.

But next morning, at 10 a.m., just as my daughter arrived from interstate. she woke up and asked for a cup of tea!

I have mixed feelings about this. I think if it were me, I'd only want to die once; I wouldn't have wanted to be resuscitated at the age of 83. But then, Mum does not know she has dementia. She thinks I am the one who is crazy and keeps making mistakes. I asked her if she wanted to be resuscitated if her heart stopped again and she said yes, it's good to be alive. So I should be glad that she wants to be here. But hey, God, what are you doing here? You sent her back to suffer more?

My cousin said to me, "God's timing is always right." For all the nice atheists out there, I apologize for this venture into the spiritual world. I'm sure you have your way of looking at things too. But this is how I look at it. So, I am trying to accept that she was sent back for a reason, that there is more work for her to do here, OR MAYBE I HAVEN'T BEEN PUNISHED ENOUGH!!!??

So, she was in hospital under close observation for a week. They could find nothing wrong with her heart. It wasn't a heart attack.

The surgeon and anaesthetist apologized. I won't be suing, that's for sure. It was good to get an apology for this horrible mistake.

The surgeon said he'd give her two months to think whether she'd like to try again. So we got a few opinions. Most opinions were that dying of bowel cancer is a very nasty way to die and even though the operation might kill her (again), that is a better way to go.

Meanwhile she had an operation for a large skin cancer on her leg. The surgeon had to cut about half an inch down. She had skin grafts. It has been painful and there's been a lot of suffering associated with it. She's still in pain and has to sleep at my place. I take her home to her house in the day time. I have to take her to the local doctor every day so the nurse can change the dressing. My workload has multiplied. I have very little time to myself now. I have to do everything for Mum. When she showers, we have to wrap the leg in plastic and make sure we don't get it wet. Goo runs down into her sock and so socks need changing several times a day and soaking in bleach. It is horrible.

I am trying to take over feeding the cat. She is resisting. I just can't take any more of her forgetting if she's fed it or not and trying to feed it six times a day at least and leaving several plates heaped high with dry cat food througout the house. There have been arguments: she says I'm trying to starve the cat to death because I don't like it. She says I'm a bully and I'm a cat-killing cat-hater. But I'm being stubborn and sticking to my plan. One plate of dry food and one small tin of food each day - no more.

God it is hard.

Time and Tide

2010-05-18T06:16:00.002+10:00

Things have continued much as before, or maybe a little worse. Every week it seems some new thing gains prominence: this week it was lids off containers. There are no lids on the coffee, Milo, milk cartons and many other things. They can't be found either: they've disappeared, so I assume they've ended up in the bin. Such a waste of food; the stress of everything gets me down.

Mum had a second colonoscopy and apparently the news isn't good. We see the surgeon later today. It seems major surgery is imminent and the surgeon has already said that elderly people often don't survive it.

I've tried hard to make her life happy lately. On Mothers Day we went for a long drive down the coast and had lunch at a pub. We're planning a trip to Cairns; I'll try and delay the surgery until we do that.

In the picture Mum is looking at photos at her sister-in-law's house.

Aaargh! Aarrrgh! AAAARRRRRRR! Grrrr!

2010-05-07T10:17:00.003+10:00

No it's not Talk Like a Pirate Friday.

Mum was to have a test this morning at Pathology where she had to remember not to eat breakfast.

Yesterday I put signs on everything. The jug. The fridge. The food cupboard. DO NOT EAT.

I arrived to collect her at 9 a.m. and she wasn't out the front with her coat, scarf, hat and umbrella as usual when she knows I'm picking her up.

So I rang the mobile phone and she answered very groggily.

I said "I'm here to take you for your test. You didn't have breakfast did you?"

She did. I went inside and showed her all the signs I had put up. She said, "I don't bother to read signs in the morning when I get up, I just want to eat."

I don't know how I am ever going to get her to do this 6-hour fasting test. It's not going to work.

If she'd agree to spend the night at my house it would be OK, I think - though every time I heard her getting up I'd have to get up too and guard the fridge. But she won't agree to stay with me at all.

We had a nice day out

2010-04-15T15:51:00.007+10:00

My daughter came over from Adelaide and we took Mum on a few outings. We went to the seaside town where she spent all her holidays from 1926. Her father had a holiday house there and a boat called Fiesta. She had fun walking on the beach and having an ice cream in the main street.

We went to Mount Kembla pub for lunch and it was great. She ate all her steak and vegies. We also went to Mount Keira Lookout.

I'm sure she enjoyed herself and she's remembered these outings for a whole week. I hope she keeps remembering them, because she sure as hell never knows what day it is.

She hit me again

2010-04-15T15:43:00.002+10:00

This afternoon I was trying to show Mum how the plastic medication pack works. She takes vitamins, fish oil, Macuvision and Crampeze - no prescription medications.

Again and again I said, "It is Thursday. You need to open this plastic lid and take the tablets in there." I closed the lid and tried to get her to find Thursday's compartment again.

She couldn't. So I took the vitamin pills out and handed them to her. I said, "Before you go to bed, you have to take the Thursday night pills."

I tried to show her where to find them. I repeated myself over and over again. "It is Thursday today so tonight you need to lift up this lid and take the pills inside there."

She didn't know what I meant. She kept asking where the bottles of vitamins are (I hid them in case she overdoses). She said she'd take them from their original bottles. I said no, you need to take them from this pill container that's labelled with the days.

She's had the pill container for years. She's always used it properly. She's suddenly got much worse.

And then she got really angry and hit me on the arm. It really hurt.

I shouted loudly, 'DON'T HIT ME. IF YOU HIT ME I AM NOT GOING TO LOOK AFTER YOU.'

I am sure the neighbours heard me shout. I was SO upset. I was thinking, how the hell can I take her to live at my place if she is going to get violent every time I try to explain something to her?

OMG, I don't know what to do. I feel so alone.

Out of hospital, no answers

2010-04-15T15:37:00.002+10:00

Four weeks in hospital and the geriatrician claims she does not have Alzheimers or any major form of dementia. What??! I am living Alzheimers from the Front Row. I know what's happening. All the nurses told me she was constantly confused, had no idea what day it was or even whether it was breakfast time or bed time.

I will never take her back to that doctor again. It's unbelievable. The G.P. read out her findings to us.

The next day, the physical therapist visited the house and I told him what the geriatrician said. He said he had the Alzheimers test in his bag of tricks and would see what result he came up with.

So he gave her the test which lasted over an hour. It was very comprehensive. There was very little she could either do, or remember. She couldn't even tell him how to make a sandwich - she started with "I'd get a knife"....she has a frightening obsession with sharp things. When he asked what she'd do if she was cooking on the stove and the doorbell and phone both rang, she did not say "I'd turn off the stove".

It was clear to him that she is a danger to herself alone in that house. He had a talk to her about moving to my place. She agreed, but she won't remember agreeing by tomorrow or the next day. I am just going to have to MAKE her move whether she wants to or not, before she does herself some terrible damage.

We went to see the renal specialist today. He was absolutely horrified that the was given Remeron (mirtazapine) as well as anti-convulsants that she does not need. He said what I believe, that these things are poisons and that her kidneys are barely coping as it is, without having added substances to deal with.

Thank you, Dr Cheng Wen. I really appreciate Chinese doctors with their alternative approach. Thank you for coming to Australia and for helping Mum.

Dr Wen respects elderly people. He talks to the patient, not the carer. He asks questions that show he cares. He remembers things about Mum, such as that she does oil painting.

Four Weeks in Hospital

2010-04-08T00:19:00.002+10:00

Mum spent the last 4 weeks in 2 private hospitals. She as well looked after. But I didn't get any answers. The geriatrician not only refused to prescribe the only medications known to help with memory loss, she wrote to the G.P., and I visited him with Mum today, stating that Mum does not have Alzheimers OR ANY OTHER SERIOUS DEMENTIA as she scored 26/30 on the memory test. HOLY COW. I can't believe that doctor wrote that. Is she stupid or what? Did the nurses not pass on their observations to her? Yes, she can score well on a memory test and I think this is a reflection of her previous high intelligence or maybe the part of the brain currently affected. The nurses at the 2 hospitals where she spent the past month told me constantly that: she didn't know what day or time it was; she got lost in the corridors and no matter how many times she was shown the way back to her room she couldn't remember it; she had the idea she was in Room 10 when it was in fact Room 35 and she couldn't be dissuaded from that; she couldn't operate the taps in the shower and did not know the difference between hot and cold; she was given her pills (the ones I objected to as they were not necessary) to self-medicate and failed as she had no idea if she'd taken them or not, or what time of day or what day of the week it was; she got angry with 2 different room mates who stayed up reading until 10 pm, accusing them of reading with a light on 'in the middle of the night'; she thought breakfast was lunch, or dinner was breakfast, having no idea of the time; she never learned to operate the TV remote or nurse-call button; the nurses noticed she'd phone me four or five times in succession with the same question or piece of information; she lost her swimming costume by putting it somewhere strange and it was never seen again; and so on and so forth. And the doctor writes that she has no dementia. The doctor also wrote that she has A HISTORY OF FALLS. This made me very angry. In fact I have felt so damn angry all day it's a wonder I don't have a stroke. My mother has no history of falls. She's very sturdy on her feet; she can out-run and out-swim and out-walk me any time. She's one of the fittest people I know and she's 83 years old. As soon as she got home, she started hallucinating and believing there had been a man dressed in a suit and hat in her back yard. When the nurse came to visit her - a nurse will visit several times a week for 3 months - Mum even told the nurse about the man in the suit in the back yard. Her yard is bounded by high fences and a locked gate. If you tried to climb over them in a suit you'd rip the crotch for sure. Then she told the nurse about the prowlers and other people she thinks come into her yard. The nurse knew these were hallucinations and talked to me about it when she was leaving. Obviously, I am never taking her back to that geriatrician again. The G.P., a lovely young Scottish doctor, told me I should go for a follow-up visit and discuss my 'concerns' with Dr P. I said the last time I tried to discuss my concerns with her, she attempted to intimidate, bully and coerce me. I told the G.P. I had been to see our lawyer about the forced medications and now had the legal advice I need to protect my mother from this kind of thing. He was very shocked; he said he'd never had a patient who'd been to see a lawyer, but that he'd never force someone to take a medication they didn't want. He told Mum to throw away the evil mirtazapine which is the only good thing that happened today. He also said he was quite surprised anyone would give a tiny old lady a dose of 30 mg daily. I am so upset. I wanted advice and help with what I KNOW is her Alzheimers (since every other type of dementia has been ruled out by thorough testing). I was prepared to trial the medications that slow the progress of the disease. I wanted someone to advise me whether I should move her in with me or encourage her to go into hostel-level care. Instead I am told she's perfectly all right. Bloody hell, the incompetence of some doctors.

We survived Easter with barely a scratch

2010-04-05T09:48:00.001+10:00

I collected Mum from her house in the morning. She came for a stroll on the beach with the dogs. The baked dinner turned out well. Mum didn't approve of my cooking methods or the meat (being the daughter of a butcher, she's very fussy). But she cleaned up her plate, then wanted to be taken home. After I took her home, she rang and asked why I had 'dumped' her there. But when I said I'd come and bring her back, she said no, she was going to bed.

So all was well. She even looked happy at the table. She ate a few Easter eggs. It's a bloody miracle.

The Easter Eggs are gone!

2010-04-03T18:07:00.003+11:00

I dread Easter. It seems to make Mum appear very evil, like she needs an exorcism or something. She gets that 'look' on her face, like she wants to kill someone, most likely me, as I'm the one 'plotting' to have her 'put away'.

She's been in hospital a month now. She's been allowed two nights at home for Easter and then she's back in hospital Monday night.

We bought Easter eggs on Thursday. Today, Saturday, she made them disappear. I had left them in her bedroom and now they had vanished. She was in a panic. She did remember buying them. I looked everywhere. I looked in each room methodically. I tried the fridge and the bathroom cupboards. I remembered to look in the bin. Not there. She wanted to go and buy more, but I said no, they'll turn up eventually so people will just have to get them a few days late. Also, the total cost was around $60 and I couldn't stand to think of her wasting any more money. She was very angry that I wouldn't take her to the shops to buy more eggs.

Of course I was kicking myself for not taking charge of the Easter eggs and keeping them at my house. I never seem to remember to do the sensible thing until some disaster has happened, then I think, why didn't I do this or that? Too late.

She hadn't been home an hour when she did something weird. I'd got her some UHT milk in a cardboard carton. You have to unscrew the lid and then pull the little plastic cover until it comes off. But she didn't know how to do that. Instead she took to the milk carton with the scissors, hacking into the side of it and spilling most of it in the process (luckily over the sink).

I have to take away all the scissors. This is the second scissor incident. The last one was when she hacked the inside lining of a leather handbag worth over $100 because she didn't know she could get her purse and glasses out by undoing a different zip. She thought her things had fallen through the lining.

I'll try taking away the scissors, but she'll notice and she'll be very angry with me. She'll probably walk down to the shopping mall and buy another pair.

Anyway, late Saturday she called and said she found the Easter eggs. Goodness knows where they were. I couldn't see them anywhere. But it's good they've been found.

Now we have to somehow get through Easter lunch without an outbreak of extreme animosity.

Good luck with that.

Why I hate mirtazapine and E.E.G.s

2010-03-23T11:40:00.006+11:00

Holy cow, I might as well go downtown and get Mum a spliff and some yeyo. We don't take drugs, doctors. Get it? No, you don't.

Which part of 'WE. DON'T. TAKE. DRUGS" don't you understand?

I took Mum to a geriatrician to get a definitive diagnosis. I think she has early Alzheimers. Multi-infarct dementia has been ruled out by the MRI scan. She doesn't have Picks disease. Her kidney problem isn't too bad (it affects the red blood cells which carry oxygen, hence dementia possibly caused by that). The doctor put her in hospital allegedly for THREE days and it has now been THREE WEEKS.

I hoped for some thorough tests to be done. I hoped for advice on how to manage her behaviour. She had a couple of 'bad turns' on 28th December. She kind of spaced out and stared straight ahead. These may or may not have been seizures. There are other things that cause these symptoms. She wasn't connected to an E.E.G. when she had these turns so no-one really knows. She's never had them before and she's never had them since.

So firstly the doctor puts her on Mirtazapine. I tell the nurses she is not to have it as I have guardianship and I say no, but they order it from the hospital pharmacy anyway. An Australian government website warns about mirtazapine, also called Remeron:

http://www.tga.gov.au/adr/aadrb/aadr0310.htm

Mum has kidney disease. The renal specialist told me to warn any G.P.s she sees that she is not to have any drugs. In the case of antibiotics, they are to be half strength.

Mum is having 30 mg of Mirtazapine every night. This is double the dose recommended for the elderly. It is causing her to have diarrhoea.

SHE DOES NOT HAVE A DEPRESSIVE ILLNESS. On the day the doctor asked if she was depressed she said 'yes', but she meant 'SAD', not depressed. There had been a family falling-out. She is NOT DEPRESSED and take note geriatric specialists and G.P.s dealing with the elderly in early dementia, you cannot take their answers as gospel. They are unable to answer any question accurately. They really have no idea and are giving you the answer THEY THINK YOU WANT. For God's sake ask the CARER for a more accurate answer.

As for the claim by nurses when I said I don't like this drug that she needs it to increase her appetite, it would be impossible to do so. Although she is thin, she eats like a horse and has the appetite of a hyena. Five minutes after we've had a huge lunch at the club she's saying "We have to eat, I'm starving." So the hell with that excuse.

So why is she having this dangerous and possibly deadly drug mirtazapine at double the usual dose? You tell me.

As for the alleged 'epilepsy', what nonsense. She has had no ongoing seizures. On the day she had the two 'funny turns', which may or may not have been seizures, there may have been factors that lowered her threshold for seizures such as being unwell or having low blood pressure or low blood sugar.

Why the hell would you medicate something that's not there? As for their dodgy E.E.G. result, you could drag in anyone off the street, give them an E.E.G. and nine times out of ten there will be an 'abnormal' result, sufficient to persuade a doctor keen to give business to the multinational drug dealers to write a script for Epilem.

I would guess that MOST elderly people would have an alleged 'abnormal' result. And yet no-one has noticed them suffering fits. This is because during an E.E.G. the brain is tormented by the person being made to hyperventilate and having strobe lights flashed at them. These things don't happen in normal everyday life. Strobe lights can induce fits in a person who most definitely does not have a seizure disorder. To hell with E.E.G.s, they are one step down from witchcraft if you ask me.

The specialist told me Mum could go into one of these (alleged) seizures and not come out of it alive.

What garbage. I can't find a single case of someone dying of a complex partial seizure, even if that is what she has.

I don't know what to do. I've stopped them giving her anti-convulsants and will get her off the mirtazapine slowly and carefully at home. I don't want her having it for one more minute, but it seems if I don't let them continue it they won't give her the tests that she needs to get on the nursing home waiting list, just in case things ever get desperate enough. The doctor suggested if I deny my mother 'treatment' there's no point in having her in the hospital. This is almost blackmail. She knows I'm desperate for help, advice and a diagnosis, but she won't let me have it unless I allow my mother to be tortured. And she is. She wakes up feeling groggy and terrible every day and sleeps through the mornings. Her memory has got worse. She's frightened. When they gave her the one and only anti-seizure pill, she went into shock, shaking all over and feeling weird in the head. Before the nurses responded to her buzzer she rang me and said "Come quickly, they gave me something and I'm terrified, I think I'm going to die."

The 'F' word is right on the tip of my tongue but I am trying hard to be polite on this blog.

I was so angry when I got home from the hospital last night, after the doctor again trying to cajole and bully me into agreeing to anti-epilepsy drugs, that I slammed the front door and swore so loudly that the next door neighbours slammed their front door and the Macedonians across the road came out onto the footpath.

"All your base are belong to us"

Unfortunately, at the moment, yes. But if you don't behave, I will just sneak her out of the hospital without even signing out and take her home, because I've had enough, and so has she.

I am now so paranoid about doctors and hospitals I doubt I'll ever take Mum near one again.

The Keys and the Cat: Taxidermist Needed

2010-03-18T20:51:00.002+11:00

I've just had Mum home from hospital for half a day to visit her cat. She didn't like how I'm looking after the cat. She's furious that I'm letting it use the cat door which she paid to have installed, to go in and out at will. She should take the cat to a taxidermist and get it stuffed, then she can put the cat wherever she wants it and it will stay there. A bit like in Farmville, when you put the horse THERE beside the barn and click on STAY and it doesn't move. Or you can click on ALLOW WALK and next time you log into Farmville the bloody thing has wandered off and you can't find it. Aaargh.

I decided to leave her there with the bloody cat. I'm not a cat lady. I love cats: I have four of them. I think they're very cute and decorative. I feed them well, I get them spayed and vaccinated but I don't fuss. If they don't like their dinner, I don't care. I don't watch them eat. My cats are all semi-feral and just turned up at my place, so they don't really like people, and that's fine with me. Mum doesn't understand me and my cats at all. The cat ladies at the About Cats Forum would hate me if they knew.

She tries to feed the cat all day long. It's very fat. She'll open a small tin of exclusive brand premier cat food with prawns and barramundi and if the cat sniffs it and walks away, she'll believe the cat is 'sick' and want to take it to the vet or she'll believe the cat is starving but doesn't like the cat food so she opens a new tin, and she can open new tins until she's up to number 5 of these $2.80 tiny tins of stuff. This is not caused by the dementia, I remember her doing this when she was 40 years old.

She demanded I give her the keys to the house and side gate before I left. I refused. The other day I brought her home for two hours and she lost the key to the side gate. Goodness knows why she'd even want to go out of the side gate when she was just on a short visit from hospital. Her whole visit was then ruined as she spent the entire time searching for the lost gate key in an absolute panic. I didn't find it on time to avoid having to pay a handyman with a bolt cutter to deal with the problem. But I found the gate key pegged to her bedroom CURTAIN the following day, so I am NOT leaving her in charge of any KEYS, and this is making her so angry.

She doesn't know it yet, but I'm never letting her get her hands on any keys again. They have caused way too many upsets in recent months. As for the cat, I'll keep unlocking the cat door.

The imaginary boy takes the hose fittings

2010-02-28T14:39:00.002+11:00

We had another weird incident last night. Mum rang me around 6.30pm and told me a little boy who lives in the street had come in and stolen all her hose fittings and she couldn't water the garden. I asked if she saw him do it and she said "No, he did it when we went out." I said, "I never saw that little boy near your place."
She said "He was sitting on my steps when we left." I said "But I would never have taken you out in the car leaving that little boy on your steps! I would have told him to go!"

IT IS NO USE ARGUING WITH HER. SHE IS SURE SHE IS RIGHT. When will I learn to just shut up?

She started shouting at me and telling me I always try to make out she is mad and imagining things.

So I went over to see to the hose fittings only to find her attaching fittings TO THE OTHER END OF THE HOSE, THE END WHERE THE WATER COMES OUT, while the hose fittings were STILL ON THE OPPOSITE END OF THE HOSE, so now she has 4 hose fittings, on either ends of the hoses, and I was not going to argue with her any more.

I tried pulling off the fittings on the other end but they were stuck so fast that neither I nor the little boy could possibly budge them without some implement to help.

I turned on the hoses and they both still worked, with the water coming out of the end that's meant to be attached to the tap.

She hasn't stopped being angry with me ever since, that I didn't see the little boy on the steps, or I deliberately denied seeing him to make her look bad. She suspects I'm trying to have her locked up, and she refuses to go into hospital the week after next because she thinks it's all part of my plan.

The Great Flood Part 2 and the Unwanted Tradesman

2010-02-21T16:07:00.002+11:00

Mum turned on the taps then fell asleep on the lounge and flooded the kitchen over a week ago. All the cupboards are ruined. We're waiting for the insurance assessor to come. He's a bit slow because of flooding and heavy rains further down the coast.

Yesterday afternoon she told me the assessor came the day before, after I went home. I tried to question her about it. Then she changed her mind. She wasn't sure if the man came in the house and had a look or not, but she thinks he was an insurance assessor. After that, she said she'd rung the insurance company and said she thought rain must have come in through the window. They said they wouldn't pay the claim.

I was very confused by this time. The trouble with Mum living in her own house is that from about 4 p.m. to 10 a.m. she's on her own and I can just hope nothing terrible happens.

Since it was Saturday I couldn't ring the insurance company to find out if they'd sent an assessor yet. I have told them to speak about the matter only with me, not my mother.

But Sunday morning, today, I rang her at 9 a.m. which I normally wouldn't, but thank goodness I did. She said, "A man is here fixing my kitchen up." I said, "Is he from the insurance company?" She said, "I think so." So I said, "Let him speak to me."

OMG, this was nearly a terrible financial disaster which may have cost my mother $5,000 of her savings. Mum had called the tradesman on Saturday and had said she had water damage in the kitchen and that the insurance company wouldn't pay. She needed someone to come and fix everything. So he was there measuring up the cupboards and drawers that need replacing!

I was JUST IN TIME to tell him that we were waiting for the insurance assessor to come and that he mustn't carry out any work.

That was SO CLOSE. How do I stop her doing these kinds of things? In reality, I can't, which is why she shouldn't be living there on her own, but how can I make her leave her home and her cat? It would be so cruel. I want her to stay there as long as possible but it's fast becoming too dangerous. I can't go and stay with her at night because I can't handle her angry behaviour at times. I need to be able to escape to my place. At times I am frightened of her. If I am to survive all this, I need my own space.

Another disaster averted. How many more?

I remembered to remove the fuses for the stove today. There are two of them. I don't want her trying to cook. She's never wanted to cook, but today she said she might make a stew. Hopefully she won't, because she'll find the stove doesn't work and she'll call an electrician and that will be more money down the drain.

I think I'll type up a little note, so small that she won't notice it in the fuse box. "Stove fuses have been removed for the safety of the occupant. Please phone daughter who has Power of Attorney before carrying out any electrical work."

A lovely day at Jamberoo

2010-02-20T18:40:00.006+11:00

On Friday I took Mum for a drive to a lovely place called Jamberoo. It's a little dairy farming area that's been established since the 1820s. She had a great time. We had lunch in a little cafe - toasted sandwiches, tea and scones.

It's nice that she has some happy memories. She can still remember these outings for weeks or even months.
She seems to be happiest when she's out of her house and looking at different things to take her mind off her problems.

Sadder and sadder!

2010-02-14T20:59:00.002+11:00

Today Mum and I looked at memorial stones and designs. I want to have mine picked out too. I don't want the kids to have to worry about these things one day.

Mum decided on one with a Celtic cross and the words "Peace be With You". We'll glue a picture of it into her funeral planning book.

I was so sad for her today! She says she's too frightened to stay in her house now that she's flooded the kitchen and caused thousands of dollars' worth of damage. She says she gets up through the night to look and see if there are any taps left on.

I don't know how I will calm her down enough so she can stay in her house with her cat a little bit longer. I had a good cry when she said she thinks she is dying. I said, "Yes, you are dying and it's very hard on me with no-one to help me!"

We had a walk on the beach in the rain with the dogs. That was quite nice.

The Great Flood

2010-02-12T21:04:00.002+11:00

Today was so terribly hot that we didn't go out for lunch. Instead I bought some sausage rolls and cream buns and took them over for Mum. I went home and at 6.30 pm I had a panicking phone call from her. I had to hurry back to her house.

Apparently she vaguely remembers planning to wash the dishes. She thinks she remembers turning on the tap. Then she woke up on the lounge to the sound of running water.

She was just horrified to find the kitchen taps had been running with the plug in the sink for a couple of hours.

The house is a terrible mess. I'll ring the insurance company tomorrow and see if they will cover it.

I think she has had another one of those strange fits, like she had on the plane, where her eyes were wide open and she was just staring straight ahead for over an hour. She looked like she was dead. I think she's just had time to make it to the lounge and lie down before passing out.

It is so frightening. I don't think she is safe in that house on her own at night any more. I just don't know what to do. I don't want to take her away from her house and her cat. But it's getting more dangerous day by day.

2003: was that where it started?

2010-02-11T00:04:00.002+11:00

My daughter, who is in the Air Force, rang me today. She recalled when she thought Nana started having memory problems. She said it was when she came back from the other side of the country at the time she gave evidence in my brother's divorce case.

She hadn't wanted to give evidence, as she really likes my former sister in law and didn't want to say anything negative about either her or her son.

She had become very confused over there with all the shouting and nastiness that was going on. I rang her once and I told her to go to the doctor as I thought she'd had a stroke, her short term memory was so bad. She wasn't making any sense at all.

But within a few days, this had passed and she was normal again.

I think that may be our earliest memory of the current problem, though, 2003; seven years ago. None of us can recall anything prior to that which might have rung warning bells.

Too many phone calls and a watch dog

2010-02-10T23:44:00.001+11:00

I sometimes leave one of my trained watch dogs with Mum so she won't feel nervous at night. This afternoon Mum came with me while I walked the dogs on the beach.

As I was taking the dogs home I asked if she wanted one left at her house. "No, just every second night will be enough," she said. So I dropped off the dogs and I left her at her house.

At 5.30 pm, the phone rang. It was Mum. She said, "When are you bringing the dog over? Don't leave it too late." I was already in my pyjamas and not feeling too well. I explained that she said she didn't want the dog. She said, "I'm terrified. I can't stay here tonight without a dog."

I told her to ring my son and ask if he would come and get one of the dogs and take it over there. She couldn't get on to him. She rang again. And again and again. I said "Mum, take some of your medicinal brandy in a glass of milk and go to bed. That will help you sleep." "No, I am too frightened!" "But there's no-one out there!"

And so it went on. Ten or more phone calls and demands for a dog. I couldn't do it. I was exhausted and sick. I didn't feel up to driving the car. I suggested she get a taxi and come over and sleep at my place.

I don't want to start her doing this, as I need my twelve hours of peace every day, but I couldn't see a way around the problem.

It is nearly midnight. She hasn't turned up. I took the phone off the hook and turned off the mobile phone.

Sometimes I wonder how much I can take. Where will it all end?

A miserable day in court

2010-02-10T23:40:00.000+11:00

As I've noted before, this illness has torn my family apart. Today I had to appear in court to give evidence as the police applied for an Apprehend Violence Order against 'a family member' who has been acting crazy since he realized Mum is so unwell.

The application was successful, but he is appealing against it.

I was so upset to have false accusations thrown at me. But today, I spoke to an old colleague who had the same thing happen in her family. She had guardianship of her mother and suddenly her sister started accusing her of stealing from her mother. It wasn't true, but the matter went to the Guardianship Tribunal, where my friend was exonerated.

Why does this have to happen? Right when we need help and support from our families they suddenly turn against us.

Such is the life of the carer.

A Strange Co-incidence

2010-02-09T09:43:00.000+11:00

When we go to Collegians Club or the Italian club for lunch, we nearly always meet up with Olive and Jim. I thought they were younger than Mum, but I checked out their date of marriage on the Births & Marriages website and I found they were married one year after Mum. I noticed they were married in Liverpool N.S.W.

So I said to Jim as we were getting coffee for the 'patients', "I was born in Liverpool where you were married, at the private hospital in Railway Street." Jim nearly dropped his cup. He said "My first son was born there!"

Comparing notes further we discovered that Olive and Mum had their babies only 13 days apart in that same hospital!

So that gave them something to reminisce about. What an amazing co-incidence.

Too much cat food!

2010-02-06T15:50:00.000+11:00

Cat food has been a problem for a number of years: too much of it. Mum would leave tinned food on plates (used by her afterwards, from the family dinner set) in the bathroom, in the kitchen and in the laundry. At times you'd step in it, there was so much of it. She is sure if she doesn't leave it all over the house, the cat won't find its food and will slowly die of starvation. This is SO annoying. Worse still, she buys the most expensive food for the cat. The dry food comes from the vet in bags that cost $58 and are meant to last three months, but are used up in a week or so.

Now that she has stolen the cat from up the road, it is double trouble.

I've hit on an idea, though. Her eyesight is terrible, so I've been buying cheap dry food from the supermarket and topping up the $58 bag. Now it's almost entirely filled with Whiskettes instead of Science Diet.

As long as she doesn't notice, we'll never have to go back to the vet for expensive food again! I'll just keep topping it up and she'll think there's plenty left.

I can't do anything about the tinned food, but at least we're saving on the other one. I'm learning that you have to tell little fibs in order to survive this.

Going out for lunch is a good idea

2010-02-03T20:51:00.000+11:00

I take Mum out to the club for lunch every day. She likes this and always cheers up. If she is in a negative mood or plain angry, she changes once she gets into the restaurant. There is a nice old couple there, Jim and Olive, that we like to talk to. Today we sat at their table to eat.

They'd never guess she has dementia, as she is able to carry on a good conversation without getting mixed up.

I already told Jim she does have dementia, and he told me his wife also has early dementia. Olive starts talking to strangers and won't stop. That is often a sign. Eventually Jim has to drag her away, saying, "Olive, come on and eat your dinner and stop annoying people while they're eating!"

She doesn't mind and it makes her stop! She is quite interesting to talk to, but she won't often let you get a word in and she does repeat the same stories. Mum doesn't know she's repeating the same stories because she can't remember. So it works out well.

As I was walking down the stair, I saw a man who wasn't there

2010-02-03T20:37:00.000+11:00

This morning Mum thought there had been a man in her front yard last night. It was pouring rain most of the night, yet she said she heard the little boy across the road and two doors down saying "Mummy, look, there's a man in the yard." I would say it's damn impossible to hear a little boy say that from her full brick house in the middle of the night with rain pouring down.

The other day she also said there was a man 'in her driveway', but when I asked her to look out the window and show me where, she said "In Bud's yard" (the man next door). She can barely see a thing due to macular degeneration, so if there was anyone there, it was most likely the owner of the house, not an intruder.

Almost every day she says "Last night the dogs went mad - there was someone in my yard." She means the neighbours' dogs, which bark at nothing and are untrained, unlike my watch dogs who are trained not to bark or growl unless someone actually touches the gate or fence or starts to come in the yard.

So the dogs were not barking because someone was in her yard, they were just barking like they always do.

I am worried about her hearing this little boy's voice. One night she claims she heard his mother say "Go over to that old lady's yard and bounce your ball on the footpath to annoy her", and she says he did, and it was dark.

Then she said on another occasion she turned on her hall light around 10 pm and the boy called out "That light shines straight into my bedroom!" and then his mother said "Go and annoy her tomorrow." This is definitely nonsense, as the boy would be asleep by ten, and as well he has shutters on his bedroom window to keep the light out. Mum's hall light cannot be seen outside as the door is solid, not made of glass.

But try and tell her this and she says, "You are trying to make out I am stupid again."

Today, I just said, "I don't want to hear any more about these intruders. You'll have to learn to live with them." This kept her off the subject for a couple of hours.

I guess you would call these events 'auditory hallucinations'. Very worrying.

A bump in the night

2010-02-03T08:25:00.001+11:00

I hate to think what could happen when I am not around, but I cannot handle Mum 24/7, so she will have to stay in her house until a place comes up in an assisted living facility. She is happy to do this, but she gets terrified at night, imagining that people are walking around in her front yard, or trying to break into the house. So I leave one of my watch dogs with her every night and pick him up in the morning.

This morning she told me that she had jumped out of bed very suddenly because she thought she heard her cat in distress outside. I think she just had a nightmare as the cat is always inside. She had walked right into the hallway wall, which is made of brick and concrete. She said she had nearly knocked herself out. She thought she might become unconscious so she'd written me a note that she'd hit her head and then she'd gone back to bed.

She has a small lump and a red mark on her forehead. It doesn't look too bad.

If she'd left a light on she might have been able to see the wall. She has macular degeneration, but with her bad memory she cannot remember the way around her house, so she is very likely to run into things that she doesn't remember are there. I think she'll probably remember to leave a light on from now on.

I know that it is very likely she'll have a bad accident in her house. I remember a lovely lady who used to live opposite Mum. She was a former nurse and very alert and competent. She was only around 65 years old, but one day she'd walked into a door inside the house. I had called her that day and spoken to her. She told me she had a huge headache from walking into the door. I reminded her that she could have bleeding on her brain and she should go to the doctor. She said she'd lie down for a while and she thought she'd be fine. But the next day, her niece had found her unconscious on the floor. She died six weeks later.

Mum is very lucky she didn't hurt herself too badly when she ran into the wall. I'll keep an eye on her over the next couple of days.

But I know that an accident could put her in hospital and from there she'll probably go to a nursing home.

She wants to go to the assisted living facility, but I doubt they'd allow her to live in a self-care unit. I think they'd want to place her in medium care.

She's being assessed by the Aged Care Assessment team for placement in a couple of months' time. Then we'll know what kind of place would suit her.

A Confusing Letter

2010-02-03T08:12:00.000+11:00

I wish Mum lived in the same street as me, at least. Then I could help her when there's some small problem. Last night I was already in my pyjamas when she rang and said she'd just opened a letter from the hospital. She has very poor eyesight but I could tell that her lack of comprehension went a lot further than that. She was like a dyslexic person trying to read that letter. I was trying to figure out what it was about but she was only giving me a word here and there. Finally she read the word 'infusion' so I knew it must be a letter about the iron infusion she has to have. I told her I couldn't go over there as I was ready for bed. She usually gets very cranky when I say I can't, or won't, come over. Being unable to comprehend written words is a new development. She was writing herself notes to remind herself about things, but she started saying "I can't read my own writing!" My brother was ringing and shouting at her about a nurse he sent to visit her and find out what was wrong with her, since he thinks I am lying about everything, and she couldn't remember what the nurse had said. So I typed it up in huge letters on an A4 sheet and left it by the phone. Even so she couldn't read the message to my brother, whose newfound interest in his mother and dislike of me is causing all kinds of problems. I wish he'd just go back to the way he was, ignoring Mum on her birthday and Mothers Day and only talking to her when she would call him. He was a lot less trouble then. But he is paranoid that I am taking her money. Maybe there is something wrong with him too, even though he's only 50 years old. Change of personality, paranoia....or maybe I am just paranoid about paranoia.

I just hope that by the time I get to her house she hasn't lost that letter. I'm making a mental note to advise the hospital and all doctors to send letters only to me.

Another fairly good day

2010-02-02T22:17:00.000+11:00

Mum has been good this week. She's been very alert and able to remember nearly everything she needs to. However we did have a problem with the old doorbell. I found the attachment that goes ding-dong and went to throw it in the bin. She said, "Don't throw that out, I put it in my pocket when I go outside so I know if anyone's at the door." I said "It won't go ding-dong then, because that's the old one that doesn't work. Remember how we got a handyman in and he tried to fix it but he had to get you a new one?" "It's not broken, it still works!" she said, getting agitated. At this point I should have let her keep the bloody thing and got rid of it when she wasn't looking. But I picked it up and headed for the bin and that's when she nearly whacked me, but I jumped out of the way just in time.

Why am I so dumb that I can't remember not to disagree with her, but to do things that need to be done when she isn't watching?

A Trip to Huskisson

2010-01-31T11:21:00.000+11:00

Mum had a lovely time on Friday when I drove her down to Huskisson. This is where she used to go on holiday with her parents from the time she was born. She owned a holiday house there until recent years. We had lunch at the RSL club and then went and looked at the beach. We bought some bread from the Huskisson Bakery.

We saw a horse and cart and I took a photo.

It was so good to get through a whole day without her getting angry and upset about anything. We'll have to do this again soon.

The Long Walk

2010-01-26T21:19:00.000+11:00

Mum couldn't get me on the phone today. Her problem was an abusive phone call from my brother. She had wanted me to drive over there at 8 a.m. and take her out for the day, so she could forget the phone call and stop being upset.

My brother is constantly demanding that she revoke the guardianship certificate she has given me. I don't know what his problem is. I'd like to see HIM put up with what I have to, he wouldn't last five minutes on the job. He'd put her straight in a nursing home.

She decided to walk to my house. She has never done this before. She has got a taxi to my house about a year ago when she was very angry with me. When she got here, I had to lock myself in my room for three hours to avoid being attacked by her. I realize now I should have called an ambulance.

But today she decided to walk. It was already 30 C at 8.30 a.m. (90 F). It was muggy, and the walk was all uphill. She was dressed inappropriately for the occasion, in long pants and a winter coat. She always dresses inappropriately lately, but she tells me that even on a hot day she feels cold, which may be her renal failure and the fact she is too thin.

The distance is about four kilometres or two and a half miles.

It is a wonder it didn't kill her. She arrived in quite good condition, and had apparently cheered up along the way, so all she wanted was a cup of tea.

After a few cups of tea, she decided she wanted to go on a short drive to the beach. I was able to take her home.

I don't know why she didn't get a taxi. Maybe she couldn't remember my address.

I am very worried at this new development. I have heard that old people will start wandering, going on longer and longer walks, until one day, they forget how to get back home.

Messagebank has to go

2010-01-26T21:14:00.001+11:00

I had Messagebank on my phone. Unfortunately, this was an opportunity for Mum to leave a series of panicked messages when she was unable to get me, either because I was out or had pulled the plug on the phone for some peace.

When she can't get me to make demands on me she gets very frustrated and angry and I couldn't handle these messages any more after I found 11 in one morning. I had decided to sleep in, so I pulled the plug on the phone, knowing Mum would be at me from 7.30 a.m. Being Australia Day, I just wanted at least one day of rest.

She still knows what an engaged signal means and if she hears that, she might decide to give up trying to call me, realizing I am not going to let her through. I don't care what she does to be honest, she can knock on the neighbours' door or CALL SOMEONE ELSE, BUT LEAVE ME ALONE. If these were REAL problems that she has, it would be different. But it's always imagined problems or small things that don't matter, such as losing her glasses (I can find them when I get there the next day).

Dialling Message Bank and then having to listen to all her messages has been stressing me out of my brain. Often she gets more and more angry, eventually shouting "Never contact me again, I am finished with you!" or something like that.

My whole family has been destroyed by this

2010-01-24T08:43:00.000+11:00

Mum's illness has caused the family to split and the rift will never go away. My brother has continually denied anything is happening. He's called me a liar whenever I've asked for help and now his anger has escalated to the point where he's been ringing Mum and abusing her, demanding that she stop me from looking after her and accusing me of taking her money.

I think it came to a head when I used my frequent flyer points to take her on holiday to Townsville. He thought I had used her money for the holiday. He was demanding an audit of her bank accounts and he shouted at her and demanded a copy of her will, which she sent to him even though I told her he is not entitled to have it.

She was puzzled when she rang him to say what a nice holiday she had and all he could do was shout and say "I don't want to hear about it." How could anyone shout at and abuse their own mother?

I have only one brother, and only two nieces and a nephew. I probably won't ever see any of them again. It is a shocking thing to happen, right when I needed someone to support and help me with Mum.

The other day, my brother and his de facto came down to see Mum and obviously to make trouble. They live 250 kms away which is one thing to be grateful for. I had to be at Mum's place to talk to the Homecare lady about cleaning help for Mum. I can't clean her house as well as mine as I have chronic fatigue. I went to the door and I heard his voice, telling Mum what to do and putting me down. So I knocked on the door and Mum came. She said "You can't come in, your brother's here." I said I had to be back in 20 minutes because of the Homecare visit. I went away and came back. They were still there. I went and sat in the loungeroom, trying to stay out of their way, but I could hear what my brother and his de facto were saying to Mum, trying to convince her I am the worst person in the world and even calling Mum a liar. I had had enough, so I took the guardianship document out of my handbag and went to the kitchen door. I said "You can't come down here shouting and abusing Mum! I have guardianship and I want you to leave now."

Then my brother assaulted me. It was terrible.

I have been to the police and they have applied for an Apprehend Violence Order.

I would be happy if he'd just sign an agreement to stop verbally abusing and harassing me and his mother and if he'd agree to attend a Community Justice Centre to talk about how this situation has escalated and what can be done about it. He'd never agree to talk to me though. So I guess it will be settled in court.

He will have the free services of the Navy solicitor so I hope the police prosecutor is good.

Three Normal Days

2010-01-20T21:19:00.000+11:00

Mum has been great the last three days. Very few memory problems at all, no temper tantrums and easy to manage. I can hardly believe how lucky I've been.

I don't suppose it will last, but it's been very peaceful.

Her iron levels are so low, at the Renal Clinic today the doctor said she has to have an iron infusion.

The Butterfly Bush

2010-01-16T04:40:00.000+11:00

Since Mum moved into her house about four years ago, she's been obsessed with the idea of chopping down every tree in the yard and chopping out every bush.

I was devastated when she paid someone a ridiculous amount of money to remove a rainforest garden planted under the huge old paperbark tree. Then she started getting quotes to get rid of the paperbark tree itself: $3000-$5000. I had to stop her, so I got the kids (now aged 22 and 23) to send her text messages that if that tree was chopped down they wouldn't be able to visit her any more because they'd be too sad seeing the placed where the tree used to stand.

When she started tearing things out of the garden, old roses and so on, it didn't occur to me that it is part of the dementia, but it is. It's caused by paranoia. She believes that trees are going to fall on her or on the house, no matter how far from the house they are. Now she is paranoid that burglars are going to get in, and she thinks if there are no trees or shrubs blocking the view of the windows, the neighbours will be able to watch for burglars. It's no use telling her the neighbours are not out on the road watching her house at 2 o'clock in the morning.

Yesterday I arrived at her house to a horrible sight. The butterfly bush that had been planted probably more than forty years ago, and was absolutely beautiful, was chopped into pieces and lying all over her front yard.

How had she managed to get someone to do this without me knowing? It had to be after I dropped her off in the afternoon. I thought she'd be so tired every day after going to the shops and the club for lunch, that she wouldn't have the energy to cause any problems. I've been watching her to make sure she doesn't employ workmen at inflated rates to do 'work' in the yard unless I have approved it. But it's not helping. As well, she paid the man $130 in advance for carting the dead tree away and of course he hasn't been back.

I am so upset! On Tuesday I took over guardianship of her, signing the necessary document at the solicitor's, and I thought I could stop these kinds of things from happening. Well I now know it is not a magic piece of paper that keeps people out of her yard.

But unless I am over there twenty four hours a day, I realize I can't stop it. She went through $45,000 in the last four years, paying workmen to do all kinds of unnecessary jobs around the house. I had no access to her bank accounts until a few weeks ago, so I had no idea she was taking out thousands of dollars at a time from her investment account to pay these people, some of them very dishonest. I didn't realize the extent of the work she was getting done or the amount it was costing. I thought the money she was paying out came from her fortnightly income.

There were signs of odd behaviour and beliefs, paranoia and forgetfulness, but over the last couple of years I have not questioned her ability to make decisions about the house and garden. I should have. If you are reading this and your elderly parent has some forgetfulness, hurry and get access to their accounts so you can check what they are spending.

I will spread the word in the street that I am now officially her guardian and that no work is to be carried out without my approval. But that's probably not going to work either. She'll call some gardener or handyman that she's found in the newspaper and they won't know they're not supposed to be there.

The worrying thing is that she could go back to the solicitor and revoke the guardianship. If she convinces the solicitor that she is mentally alert at the time, she can do that. She can also revoke the Power of Attorney.

I have discovered that under Australian law, you cannot force a person to do what you want them to, even with guardianship. You have to consult them, no matter what stage of dementia they are at. You cannot say, "No, you can't do that or buy that or go there!" In that case, it's a wonder any old person ever ends up in a nursing home, if all they have to do is say no.

I don't know what the hell I am going to do. Being on my own, it is just impossible. I am so frightened, I woke up at 3 a.m. and couldn't get back to sleep. I imagined the paperbark tree in pieces all over the back yard and $5,000 missing from her bank account. I imagined her getting nasty and throwing things, which she does sometimes, and wondering how I am going to put up with that.

I also lay awake thinking of the beautiful butterfly bush that wasn't doing any harm and is now dead.

Sunday and a Vacuum Cleaner

2010-01-10T22:29:00.000+11:00

I don't live at Mum's place. She lives about a kilometre from me. So she's always ringing me up in a panic. Today she rang and said, "There's something wrong with that new vacuum cleaner. It hasn't got one of those things that lets you get close to the floor."

When I arrived I was astounded to find that she'd tried to vacuum the floor with the new vacuum cleaner without a hose! She'd gone all through the house holding the cleaner upside down with the hole the flexible hose plugs into sucking up the dirt.

I can't believe she did that! Wow, that is so weird! I got the hose and plugged it in. I showed her how it worked. I didn't think to leave the hose plugged in; I assumed she remembered how vacuum cleaners work.

But she doesn't. A very worrying sign. Still, I could see the humour in it.

Sometimes she knows there's something not right

2010-01-09T22:55:00.001+11:00

Sometimes Mum has insight into her forgetfulness. She gets sad and confused and says, "Do I have dementia?" My answer is, "Once we get to 60 we all have a bit of dementia. We all start forgetting things."

The last few days, Mum has been sure a lady is coming to clean the house. No-one is coming at all! She's been ready every morning with some cash ready and she's cleaned her house thoroughly so that the cleaning lady won't think she's dirty.

She's hiding everything that the cleaning lady plans to steal that she thinks is valuable, including cheap plastic jewellery. It's all hidden away and I'll never find it again. She's very paranoid.

Poor Mum! I'm feeling more sorry for her than myself today, because she's been quiet and sad, rather than angry, argumentative and even violent, which she often is.

But mostly I feel sorry for me. She looks like my mother, she sounds like my mother BUT MOST OF THE TIME SHE ISN'T MY MOTHER. It's frightening. This person who's taken over from my mother gets all maudlin and clingy and makes a grab for me to hug me. I jump out of her way, horrified. I don't know you! Who are you? Go away! Don't touch me!

When I go back home I feel so ashamed of myself. I didn't want to hug my mother. No, I didn't, because IT'S NOT MY MOTHER.

I am so glad she lives at her house and I live at mine, because if I had to be with her 24 hours a day, I think I'd jump under a train.

People say I should be concerned that while I'm not with her she'll try to cook something and start a fire and burn the house down. This is awful, but I DON'T CARE. My sanity is more important than worrying about a fire that might never happen.

I don't think she'll cook anything though. She's always hated cooking and housework. I can't see her getting interested at this late stage.

Calling 000

2010-01-09T22:48:00.000+11:00

Four weeks ago, Mum thought she heard someone trying to break down the back door. That's why she ended up getting a new security door. There's really no evidence that anyone was there, and since they allegedly went away when she turned all the lights on, they weren't very good burglars.

Mum called 000. Apparently the operator didn't put her through to police. She said something like "There there dear, you're safe now, just go back to sleep." So Mum must have sounded really confused and strange, or they would have put her through.

For the next three days, Mum told me and the neighbours that she called 000 'last night' because someone was breaking in. I hope she didn't, but she might have. I wonder if they'll get my name and phone number and tell me to make her stop.

I left one of my watch dogs with her for a few nights but she still thought someone was trying to get in. They'd have some nasty bite marks on them if they did.

I wrote the number for the police in big letters and stuck the piece of paper above the phone so hopefully she'll call them and not the emergency number. They might be better able to deal with her calls than the 000 operators.

I've taken away her phone book and replaced it with one containing only the numbers of her friends and relatives, to stop her ringing plumbers and electricians and tree loppers and handymen. If I don't stop her, she'll use up every cent she's got getting things done that don't need doing.

She's really paranoid about the beautiful fifty year old paperbark tree in the yard. It's not going anywhere. I'm determined it won't be chopped down.

The back door won't open!

2010-01-09T22:38:00.000+11:00

8th January 2010. I spent several hours with Mum. She had appointments to go to and shopping to be done. We had a look a a nice retirement village overlooking the sea. I don't think she'd pass the test for unassisted living though. I sometimes think she'd probably qualify for the dementia unit, but the memory problems, paranoia and strange ideas come and go. They're intermittent. Some days she's like her old self. She said she'd like to live in that village, but I don't think she'll make it there. I feel horribly sad and depressed over it.

Two days ago she got a new security door installed out the back.

I dropped her off home, went in and did a few things and then went home so exhausted from stress that I fell asleep on the lounge.

The phone rang. It was 7 o'clock. She's usually in bed asleep by then. It was Mum. "I can't open that new back door!" she said. "It's jammed! I have to be able to get out! You have to contact the people that installed it now and get them to come back!" I said, "Mum, you don't need to get out right now. Just lock the wooden door and go to bed. I'll look at it in the morning." "You hate me! You don't want to do anything for me! It's true what your brother said!" she shouted and slammed down the phone.

I thought: Good, she's gone. I went back to sleep. The phone rang again.

"I can't open that new door!" she said. Aaaargh.

I couldn't go anywhere, I was that exhausted. I rang her neighbours and they kindly went up there to see what was wrong.

They found the key to the door lying near the front of the house on the floor. There was nothing wrong with the door. She'd locked it herself.

When they'd arrived, she'd wanted them to call the door installers and make them come.

But the problem was solved - until next time.

When I've spent all day with her, I just want to go home to my house and rest. I don't want to be on call 24/7. I will go crazy if this keeps up.

When no-one believes you

2010-01-09T22:12:00.000+11:00

I feel so sad and alone tonight. I have tried to tell my brother and his 19 year old daughter for some time that something is wrong with my mother.

When I sent him an email asking him to help me with a problem, he rang her and read it out to her, telling her I was telling lies about her. It took three weeks to calm her down.

He never believed me when I told him that Mum has chronic kidney disease, or a serious blood condition (which has cleared up) or blindness caused by macular degeneration. I should have just stopped telling him things.

Anything I told him, he'd ring Mum and ask if it was true. She'd always say "No, I am fine, I've never felt better." Either she didn't recall the doctor's words or she didn't want to worry him. So this was more 'evidence' that I was a liar.

Recently Mum had a type of fit on a plane. She just fell unconscious in her seat with her eyes wide open. I thought she was dead. On landing, she was rushed to hospital. I thought: this is it. She's going to die. I really have to ring my brother (even though I'd promised myself I never would again).

So I rang him and he said "Is this another one of your lies?" I told him the name of the hospital. I was there, later, when he was speaking to the doctor and I could hear what he was saying. Was she really taken by ambulance from the plane? Did she really collapse? I heard the doctor say "She says she has a brother living nearby and he will come and get her tomorrow." I don't know what my brother made of that. She has no brother; he died three years ago.

I took her home the next day and my brother sent his 19 year old daughter down to see her. I don't know why he didn't come himself. But then he's only ever seen his mother a few times a year and he never bothers to ring her. He's never shown any interest in her welfare whatsoever.

I made an appointment for her with her own doctor, who has seen evidence of the dementia when she didn't recognize him or recall that he'd given her antibiotics three days before. In fact, he was the first and only health care worker to say to me, "Did you know your mother has dementia?"

My niece took Mum to the doctor. I just let her go, I was so exhausted. It turned out later, that she'd said I didn't want anything more to do with my mother and she was going to live in another city 300 kms away.

My niece took my mother away to my brother's house. I rang her on her mobile phone, which she can still use, and she told me she was having a brain scan. I rang my brother to enquire about this and he slammed down the phone. He did this a few times, on one occasion saying "I don't talk to liars."

I rang Mum a few more times. I asked her to call out to my brother and ask when she was coming home. The answer was always some excuse about appointments coming up. He refused to give a date. I sent him a message asking when she was coming home. No answer.

I got really worried. Mum was saying "I just want to go home to my house and my cat." My brother and his de facto weren't letting her go. I found out they'd booked her for an ACAT assessment. They don't do those assessments in someone else's home so I rang and cancelled it. This must have made him very angry.

But the final straw was when I got a fake email which appeared to come from Mum. She doesn't use the computer any more - she can't see well enough - and she doesn't have an email address.

The email said "Don't ring me any more. You are only upsetting me. I don't want to go home. I am staying here."

I got recordings of Mum saying "I want to go home" and my brother in the background shouting "You're not going anywhere". Then I drove 300kms and went to the local police station.

They came with me to rescue Mum.

She was very glad to get home. I'm sure the police coming and Mum going home intensified my brother's hate for me. It also made my niece hate me as well.

I had some very nasty emails about the 'fact' that Mum showed no signs of dementia and that my brother would be getting legal advice about getting Power of Attorney. If she's OK, how was he planning to do this?

It's amazing how someone with dementia can hold themselves together for a whole week. Maybe it was because they did everything for her so she didn't have to think. She couldn't lose things, because they were there to look after everything.

So here I am, all on my own. But I do have my kids. They have seen the signs. They are 22 and 23 years old. My daughter saw the catastrophic reaction. My son has seen a few things happen. I can't expect them to look after Mum, though.

The loneliness of the dementia carer.

Paranoia and the Cat

2010-01-09T22:10:00.002+11:00

Mum has a cat. Her name is Cleo. She's had her for twelve years. Mum used to be sensible in looking after the cat. She installed a cat door so it could go in and out when it wanted to. She fed it twice a day and didn't fuss.

However, over the last four years, Mum has attached a lot of paranoia to matters relating to the cat. She has stopped letting the cat outside and keeps the cat door permanently locked. If the cat's not hungry and she offers food to it and it won't eat, she'll open a new tin of food and offer it that. Then she'll ring me and say, "Something is wrong with Cleo. She's not eating."

Last year the vet told Mum that cat is way too fat. It needs less food and more exercise. It won't get exercise as long as it's locked inside. Also, the vet told her to stop leaving huge plates of dry food around for the cat to nibble on throughout the day. But it didn't stop her. There are plates of food everywhere, and every day she tips them out into a plastic bag because they might be stale and gives it to me for my cats. The dry food she buys costs $57 per bag from the vet. It's meant to last about three months. It's gone in less than two weeks. What waste of money!

Sometimes I bring my dog when I visit and on the way to the back yard, the dog passes the cat, which hisses furiously. Mum says "Your dog is giving my cat an asthma attack! Get it out of here!" I try to explain the cat is angry and hissing, but she can't be convinced.

When I look in the fridge every few days, I find dozens of opened cans of cat food - small expensive ones - with a spoonful removed from them. If I don't check and get rid of them, in a couple of months they are all in there rotting, so I've learnt to sneakily make them disappear every few days. If they look OK, I take them for my cats.

Then there is the matter of plates. Mum feeds the cat on the plates she eats off. It makes me feel sick. I've tried making her stop, but you can't. You cannot convince a person with dementia that they are wrong. They are living in another world where everything you say is a lie, and everything they believe is the truth. If you try to convince them of some fact, then you are conspiring against them in some way, so it's best to say nothing.

But then even when she was younger, she'd feed the cats on plates from the family dinner set. She was even a bit paranoid for a while there, going outside at 2 a.m. going 'Puss! Puss!' because she imagined her cat was 'lost'. My father used to get so angry about it. She was only in her 40s then. She did get over that after a couple of years of being told off.

Now Mum keeps 'losing' the cat. She can't see very well, but she can't reason that the cat door is locked, all the other doors are locked and there is no way for the cat to escape. If she can't see the cat, she believes it is 'gone'. She starts to panic. The cat is usually under a bed, but she can't think to look in all the hiding places, she just panics.

Three weeks ago Mum rang me three times from 9.30 p.m. to tell me the cat was 'gone' and that I had to go and find it for her. I refused, and on the last call, I pulled the plug on the phone. I'm glad I wasn't there to see how angry she was.

I just hope she didn't ring her neighbours, as they are getting a bit fed up. One neighbour told me recently she visited five times in one day, each time to give the neighbour the same piece of news. She didn't recall the previous visits.

Around that same time, at about 9 p.m. at night, she believed someone was standing on her back porch and called a home handyman to come and look. A small shop-door alarm she has was being set off, possibly by a stray cat or the wind. She asked the handyman to disconnect the alarm and paid him $50. If this kind of thing keeps happening she'll be broke in no time.

But I think the biggest cause of her paranoia is that cat. Sometimes I really hate the poor thing.

The Catastrophic Reaction

2010-01-09T22:10:00.001+11:00

In August my daughter, Mum and I went to Thredbo to see the snow. We stayed in a cabin in the bush. It was really nice and I thought Mum would enjoy it. The first night we lit the campfire then I went inside and asked Mum if she'd had her shower yet as I wanted to hang out the towel to dry. It had only been about four minutes since I last saw her and I was just reminding her to have a shower. But she got really angry and accused me of thinking she was dirty. "You think I never have a shower! You are nasty!" she shouted. I made the mistake of asking for the wet towel. She couldn't produce it, and got absolutely furious. She screamed and sobbed. She went into my room and lay on my bed crying and crying, saying "You hate me! You never believe me!" My daughter and I were absolutely dumbstruck. She wouldn't come out of my room and she wouldn't stop, so I said to my daughter, "I can't take this, I'm going to take the car into town and find a motel." My daughter said "Don't leave me alone with her! She's horrible!"

We went out for a long walk, leaving her there, and by the time we got back she was sitting at the kitchen table. She demanded to have a 'talk' with us about our terrible behaviour. My daughter managed to distract her by turning on the TV and changing the subject.

It was terrible, uncontrollable and frightening. I didn't know what had happened until I got home and found on the internet a description of a 'catastrophic reaction':

Some people with dementia overreact to a trivial setback or a minor criticism. This might involve them screaming, shouting, making unreasonable accusations, becoming very agitated or stubborn, or crying or laughing uncontrollably and inappropriately. This tendency to overreact is part of the illness and is called a catastrophic reaction.

Sometimes a catastrophic reaction is the first indication that makes relatives aware of the dementia. It may be a passing phase, disappearing as the condition progresses, or it may go on for some time. Some causes of catastrophic behaviour include:

. Stress caused by the excessive demands of a situation
. Frustration caused by misinterpreted messages
. Another underlying illness.

My Grandmother

2010-01-09T22:09:00.000+11:00

I lived with Mum's mother for several years before Mum took her to live at her house. In her old age, my grandmother was still mostly the same person, but there were some worrying signs. There were personality changes. If she'd meet someone she knew on the street, she would start talking to them and never stop. You could see they wanted to get away but she wouldn't let them. If I took her to the solicitor, she'd hold the floor for up to three hours. In the end I'd have to say "Come on Nan, time to go," to get her away. She'd also ring the university and demand to speak to a professor of English. Then she'd ask him to spell a word for her.

At times when I tried to stop her making these phone calls, she'd threaten to call the police. I offered to move out of her house, but she asked me not to go. So I stayed, but she drove me crazy at times. She was never forgetful though.

My mother took her to live with her when she was 69, and she died aged 71 of a stroke.

Going back further, Mum's grandmother did not have dementia at all until three weeks before she died at the age of 86. Then, she started to act very strangely and paranoid. She was taken to hospital, where she died three weeks later. I think she also died of a stroke.

Mum's grandmother did have agoraphobia, though. She did not leave her house for 40 years. In fact she wouldn't go past the front door.

So sometimes I wonder if dementia is hereditary, but my mother's mother and grandmother did not have the same symptoms that she has, and not as severe.

When did I notice something wrong?

2010-01-09T22:08:00.000+11:00

I'm trying to pinpoint when I noticed something wrong.

Five and a half years ago, there was an article in the paper saying that conmen were going around visiting old people and telling them their roof needed repairs. They offered to have a look and do minor repairs for $50, then they'd come down from the roof and say there were more holes in it than they expected, and ask for $200 and the amount would keep creeping up. In fact all they were doing was climbing around on the roof and getting paid.

These conmen visited my mother. She made a big fuss of them because they said they were unemployed and looking for work. She made them a cup of tea and fed them. They climbed around on her roof. They made holes in the garage roof by climbing on it and it leaked forever after. They told her they could fix her roof for $800. They took her to the bank and she withdrew the money. They then got the hose and hosed down the roof. That's all they did. She thought they were wonderful even when I told her they were con-men. She denied they were. She said her roof now looked 'beautiful' and was all fixed up. I wanted to call the police, but she got very angry and said they were good workmen and she'd disown me if I did anything like that. So there was nothing I could do.

Five years ago, Mum decided to sell her house and move closer to me. She put her house up for sale with an estate agent. The price was $430,000, with a $30,000 negotiation built in. $400,000 was the going rate for houses in her area.

Unfortunately a con-woman went to see Mum without the estate agent and told her lies. She said she desperately needed the house for her sister, who needed three bedrooms for her children. She asked if Mum would accept $300,000 as that was all she had. Mum agreed and lost $100,000. I was angry and devastated. I told her off, but she said to me "It is better to accept a lower offer from someone who comes with their chequebook than to wait for a higher price." She didn't understand that she was meant to let the agent do the negotiating. She didn't accept that she had been conned, even when the buyer put up a large 'For Lease' sign as soon as the sale was completed.

So I suppose Mum was around 78 years old when her judgment started to go.

She was always a perfect mother

2010-01-09T22:03:00.000+11:00

I have called this blog Lorelei, because I remember Mum playing it on the piano when I was young. She used to play the violin, too.

Mum had two children, me in 1952 and my brother in 1960. She was always very kind and rarely angry. She spent a lot of time with us and put a lot of work into bringing us up. Our father wasn't a bad person, he was a good provider, but he didn't have much time to spend with us. His whole life was his work and politics.

We had some lovely camping holidays and also holidays in our beach house at Huskisson. We had a large extended family of uncles, aunts and cousins, but it fell apart when my great grandmother died. She had kept everyone together.

Probably the most shocking event for my mother was when her father died in 1962. It was the end of her family's wealth. He was a businessman who owned properties. Due to death taxes, a lot of these had to be sold.

He had a huge funeral. I remember it well. Hundreds of people turned out. Hundreds more stood by the side of the road and watched the cortege pass.

After that, there was no extra money for my mother to spend on herself. There was only my father's income. We all felt a bit poorer. Mum's mother was sacked from her shop assistant job because the shop had to be sold. A few years later the family mansion was sold as well and my grandmother moved to a small house.

The death of my grandfather had a huge, terrible impact on all of our lives, and my mother still cries about it today.