Sunday, December 30, 2012

Surviving Christmas

It's now 30th December and I'm pleased to report that we survived Christmas. I was absolutely dreading it and had discussed it with the head nurse at the nursing home where Mum has been a permanent resident since 4th December this year.

She said that there is no need to take the residents out on Christmas Day if it's going to be too traumatic for everyone.

Some of her suggestions:

*Bring an esky of Christmas food and have either lunch or dinner in one of the nice outdoor areas, where you can even have a barbecue.
*Just come and visit with presents - they won't remember that it's Christmas, anyway. The nursing home has a great Christmas programme of activities including:

- night time bus tours of Christmas lights and displays
- three Christmas parties in the three areas (low care, high care and Sunshine) which everyone attends
- Christmas carol singing on several occasions
- visiting choirs
- Christmas craft

*Taking them 'home' for Christmas can just increase their agitation and make them unsettled.

I agree with all this, but several months ago I'd purchased tickets to a private function at the Italian Club on Christmas Day. So I decided I'd take her there and back to my place to see the cat afterwards.

It was going to be a very grim Christmas for me. No visitors expected and I was too exhausted to even put up the tree. I couldn't be bothered taking Mum shopping to choose presents for me this year and then wrapping them myself, so I knew there'd only be two presents for me under the tree. For her grandchildren, I got her to write out cards and I put $50 in them. Anyone over 21 doesn't receive Christmas money because it has to stop somewhere. Anyway, the nursing home takes most of her pension and superannuation payments so she can no longer afford to be generous.

As it happened, a friend riding his motorbike from Melbourne to Brisbane for Christmas (a distance of 1800 kms or 1200 miles) contacted me on Christmas Eve to see if he could stop over due to storms in the area.

Talking of cards, surprisingly, her handwriting is still good and she can still spell. So as long as I told her exactly what to write, she managed to reply to the few cards that came in.

For the first time in 30 years, I'd be on my own and not cooking a baked dinner for anyone. I felt very lost. So the prospect of going to the Italian Club on Christmas Day was at least something to look forward to.

I left a note for the nurses to dress her in her beautiful Leona Edmiston original dress that she wore to my daughter's wedding. They tried, but when I arrived, she was wearing jeans and a blouse. They said she stated, "I wouldn't be seen dead in that dress." 'That dress' cost close to $2,000. It's in the picture below.

Mum had absolutely no idea it was Christmas Day. When I told her, she said, "I thought Christmas was over weeks ago." I suppose this might be because of all the Christmas parties and activities at the nursing home in the days leading up to it.

In case I didn't mention it before, Mum became a permanent resident there on 4th December.

Mum wasn't very happy, but I told her either she put on the dress or we didn't go anywhere. She finally agreed. It took ages to get her into that dress. For starters, she'd undone every single button - the buttons are basically meant to be decorative. She then objected to wearing her gold sandals and wanted to put on socks. I just kept insisting, we get dressed properly for Christmas dinner or we don't go anywhere. She made a few nasty remarks about me 'dumping' her in 'that terrible place' with all those 'mad people' when there's 'nothing' wrong with her.

I also got her to put on some jewellery and finally, makeup. This wasted a lot of time and by the time we drove all the way across town, there was only ten minutes of church left.

That was probably a blessing anyway, because I've basically given up taking her to church. After fifteen minutes she'll say loudly, "Get me out of here. I don't like it."

At church we lit a candle and then went out the front to wish Father Ron a happy Christmas. He replied he intended to spend the rest of Christmas horizontally, being all Christmassed out. Father Ron is multi-lingual and was wishing everyone a happy day in many languages. Next year I swear I'll find a language he can't possibly know and really stump him.

After church, we went on a drive past the harbour and the fishing boats. This was a drive Mum's father used to love to do on Sundays and she remembered that.

Then it was time for Christmas dinner. It was a fantastic smorgasbord of seafood from the Italian fishing families, roast pork, beef and lamb, baked vegetables, salad, huge Barramundi from the Northern Territory and traditional Italian desserts. I piled Mum's plate high and was very pleased when she ate the lot without much complaint.

After lunch I took Mum to see her parents' grave. She was very vague by that time. She kept asking, "Who's buried here?" We walked through the cemetery and she asked, "Aren't we going to see my father's grave? Where is he buried?" Her short term memory mostly only lasts a few seconds now.

We took the dogs for a quick walk down near the beach. They had their presents too - rawhide bones and new rolled leather collars. It was quite a hot day, but many Christmas days are scorchers here, so it wasn't too bad.

At my house, she sat on the veranda with her cat for a short while. She used to stay there for an hour or more up until a few months ago. Now she only lasts a few minutes, before asking, "When are we going out to eat? Why don't we ever go to the shops?" On the way back to the nursing home, she asked to go to lunch or to the shops over and over. I had to keep repeating, "It's Christmas day Mum! Nothing is open and we had lunch at the club!" to which she'd reply, "I thought Christmas was over weeks ago." She started to get nasty to me a few times on the drive back but I'd reply, "Don't you ruin my Christmas day!" and she'd stop.

Back in her room she opened her presents. She wanted me to take them away in case someone stole them. I gave her chocolates, biscuits and some pale lipsticks that she can't use to write all over the walls as she did once. She keeps writing my phone number everywhere and if there's no paper she writes on walls and even curtains. She must think I don't know she's there and someone needs to ring me to come and  pick her up. How she remembers my phone number is a complete mystery.

She wasn't happy when I left. I left her at her table in the dining room ready for dinner at 5 p.m.

But overall we did a good job surviving Christmas Day. I just hope next year it won't be quite as dreaded in anticipation.

Mum in her room on Christmas Day. The horse in the photo is Black Caviar. You can see the nice balcony where she's allowed to have pot plants. 

Solving the jewellery problem

Mum is always asking where her jewellery is. She's never happy with the response, it's in her jewellery box under my bed. She wants to have that box to check that everything is in there. But she no longer remembers what jewellery she has.

Now she's in the nursing home again (after 10 hellish months at my house) I didn't want to give her any of her jewellery, some of which is from her great great grandmother and is 150 years old. She might lose it, break it or give it away.

I had an idea. I went to the Salvation Army second hand shop and bought $50 worth of old jewellery - a watch, rings, brooches, bracelets and necklaces. 

Here it is in the picture.

I recently bought a CD cabinet which has many small drawers that Mum can spend time rummaging through. In the CD cabinet I have put lots of interesting things, as well as chocolates in one drawer, lollies in another and loose photos in another. People with Alzheimers love to rummage.

Now there are three drawers containing jewellery. When I visited her yesterday, she was wearing one of the rings and the watch. 

Wednesday, October 31, 2012

My mother has Alzheimers Disease

I have changed the name of this blog from "My mother has dementia" to "My mother has Alzheimers Disease". The reason is, that previously, the specialist had said it's most likely vascular dementia. It wasn't progressing much and her memory wasn't too bad. She could pass the mini-mental-state test with flying colours. She was mainly just paranoid.

But the last few months things have got worse. The specialist says it's now most likely both kinds of dementia, but definitely Alzheimers now.

The deterioration over the past few weeks has been noticeable and shocking. I had thought she'd coast along for the rest of her life being more or less the same, but things have really taken a dive and almost every day, I notice a skill or ability she no longer has.

When I visited her in the nursing home where she's having respite, last weekend, I found she'd broken her mobile phone into bits and put all the bits in various drawers. I managed to find them all and put it back together.

Until a few weeks ago, she knew to press number 2 to get me or 3 to get my daughter on the phone. She can't do that any more. Until a few weeks ago she knew how to plug in the phone charger -not any more.

She's losing the lids off everything - makeup, face creams, toothpaste, and she's pulled the nozzle off the expensive bottle of perfume I left for her and lost it.

For the past three or four weeks she hasn't been able to find and put on a bra, so if no-one dresses her, she goes bra-less. She basically can't find any of her clothes and needs someone to stand there and pass her things. At the nursing home, they don't dress the residents as it's only hostel care. So I've found her dressed in some very odd combinations, probably chosen by the Alzheimer lady in the next room.

She's started keeping her shoes in her undies drawer or other parts of the wardrobe, and she almost always puts her shoes on the wrong feet.

She gets her clothes in a terrible mess, pulling them out and then throwing them back in at random. She won't put her clothes out to be washed, but she was the same in the nursing home where she lived for 8 months last year. She believes the clothes won't come back and so she hides them.

A few months back, she wouldn't do any of these things except the hiding dirty clothes thing. The deterioration is so noticeable and such a terrible shock when I wasn't expecting her to ever deteriorate suddenly.

Physically she is as fit as a fiddle and can walk for miles. But mentally she is racing towards death. I can see that she will reach Stage 7 very quickly, even though the mean duration of the 6th stage is 2.3 years.

I'd say at present she's in late Stage 6. The information on the internet says that once they lose the ability to dress without assistance, they lose the ability to independently maintain cleanliness in toileting. This has certainly happened.

She has absolutely no idea where she lives - the suburb, the street, completely blank on those questions.

She started putting her clothes on inside out and backwards about five weeks ago. One day I found her in the bathroom after her shower, trying to put her legs into a skivvie. I have to take away her day clothes now - which she strongly objects to - and only leave the pyjamas in the bathroom, otherwise she'll put back on not only her pyjamas, but everything she's worn that day, including the dirty underpants.

She puts the toilet paper in strange places - on the floor, in the bathroom basin, in the bin. If I try to help her and remind her to wipe herself, she'll hold up the dirty toilet paper and ask me what to do with it. If I leave her on her own, she'll stand up with the dirty toilet paper in her hand and then smear it all around the toilet seat. I've gone through bottles and bottles of bleach.

I have read that urinary incontinence is the next stage.

Quite often she does not know who my daughter is, and she didn't know who I was on a couple of occasions. Her speech is OK, but all she wants to talk about is cats.

Stage 7 is so horrible I hope she doesn't live that long, but unfortunately, she's in such good health, she probably will.

I never thought it would come to this. I never thought, because not one other member of her large family ever fell victim to such a terrible thing. All her aunties except one, fell victim to an early stroke. Her own mother died at 72, with some minor mental changes, of heart failure. The aunt who lived to be over 90 had all her marbles when she died. The men in the family died early of lung or heart conditions, or cancer, well before they could develop dementia. Her brother died of cancer at 78, her father of a heart attack at 58. Her maternal grandmother died at 87 following a very short - 3-week- episode of mania. Before that, she was spending her days betting on the horses and listening to the radio. So there wasn't too much wrong with her. Her paternal grandparents died aged 34 and 54. No dementia there - but had there been modern medical assistance, they may have lived long enough to suffer this, who knows. I know the medical histories and causes of death of her great grandparents as well.

Elderly family members in the 1950s - and not one of them with dementia.

Wednesday, October 24, 2012

What do I do, what am I to do?

I don't know what to do. After Mum's latest rampage, the damage to the car door, the broken window, the upended furniture, the broken door knob - what do I do? 

Virtually everyone is saying, "Put her in a nursing home and leave her there. You can't manage this behaviour." Well, we haven't even tried risperidone yet. Shouldn't we try everything first, before putting her in a high-security gaol?

She's still in respite care. They aren't having much trouble with her, other than her wandering out of her room in the late afternoons and getting lost, wandering into other people's rooms and demanding to ring me all the time. When she rings, she asks me when I am coming to get her. I tell her I'll see her on Saturday.

I think she's being a bit of a pest to my aunt (Dad's sister) who is in there due to bad arthritis, not dementia. My aunt wants to look after her and entertain her but I think she'll soon tire of that. I hope Mum is never nasty to her. At first she wanted to use her phone all the time so she had to say it was disconnected or something, to stop her. Now she rings from the nurses' station.

Last Saturday I took her to the shopping centre. I'm not bringing her home - I'd never get her in the car to go back again. She was pretty awful at the shops. She just kept saying she was miserable, wished she was dead and why didn't I take her to see her cat. She ranted about changing her will so I won't get anything since I'm so nasty to her, allegedly.

The cat is the very thing I want her to forget. I can't stand her obsession with cats any more. I'm hoping maybe three weeks in the pokey will cure her of obsessing over real and imaginary cats. 

I think if she were in respite care for longer, she might decide these people weren't strangers requiring good manners and courtesy any more and start being just as nasty to them as she is to me and everyone here. I think maybe she's not too much trouble because she still has the idea that you have to be polite to strangers.

I rang the government advisory service on dementia behaviours. Their advice was that they don't think this behaviour is manageable at home. But what if the behaviour can be stopped with anti-psychotics?

If Mum goes back into the nursing home system, it will be a financial disaster for both of us. They will take all her money (the small amount left will have to go on her private health insurance) and I won't be able to afford to even take her for a long drive, without her helping out with household bills and petrol. There will be no more holidays - ever. I don't get enough casual work to take anyone on a holiday. I will be back to living in poverty most of the time and the nursing home will be wanting me to give them money for day trips and wanting things purchased for her (the last thing the other nursing home wanted me to buy her was a walking stick - which she certainly does not need and which I could not afford). 

I guess I will have to have her back here at least for a time, even if she's going into full time care. During that time, I hope to be able to give the risperidone a trial. 

What a choice. Incarceration in a miserable place for life, or possible death from risperidone in a few months. I know I would choose the shorter life and stay home. I think she'd feel the same. It might work, or it might not. Valium and Ativan had absolutely no effect on her psychotic rages. So I can only hope.

Wednesday, October 17, 2012

Mad as a cut snake, Mum jumps out of the car and a psychotic episode

What a terrible time we have had the last few days. On Friday, she was particularly crazy, her eyes looked odd and she went deaf. The doctor couldn't see any wax in her ears, but the nurse syringed them out just in case. Still deaf. The doctor said she probably won't regain her hearing. How suddenly did that happen! I'm not getting her another hearing aid. She just won't wear one - waste of $600.

The doctor thought maybe she'd had a small stroke, so he wrote a letter for the hospital and told me to take her up to Casualty.

On the way, in peak-hour traffic, at 80 kph, she suddenly decided to jump out. Without warning, and in one swift movement, she undid her seatbelt, opened the door and out she went. Half-way out, I grabbed her by the jumper, while swerving to try and miss the telegraph poles, the passenger door swinging in gale-force winds, and trying not to hit any of the other traffic. The door hit a pole and was damaged.

I put on the hazard lights and stopped the car, got her seatbelt back on and shouted at her, "What the hell do you think you're doing?" "I know what you're up to," she said. "You're going to dump me at that hospital." I realized it was after 3 p.m., when the paranoia kicks in.

The traffic in King Street where she jumped out of the car

I drove around the block and found somewhere safe to stop. I wasn't taking her anywhere in that state. My car doesn't have child-locks. I dialled 000 and requested an ambulance. By the time they arrived, she'd got out of the car and was headed up the footpath.

The paramedics clearly were not happy to have been called. They glared at me angrily and asked what was going on THIS time, referring to LAST time they were called to my house, took Mum to hospital, only to have the doctor make them bring her back home again. A waste of their time.

They persuaded her to get in the ambulance and I followed them to the hospital. Fortunately they agreed to keep her overnight and I was able to go home and rest. MRI scans showed up nothing and all she did at the hospital was sleep, something she won't do at home until she's rampaged for several hours and exhausted herself.

On Monday night, the day before she was to go into respite care for 3 weeks, she went on the maddest rampage yet. I managed to get her to shower, gave her 5 mg of Valium (which had no effect whatsoever) and gave her dinner - which she refused to eat. She'd been at Day Care all day, then on the Twilight Bus Tour, arriving home at 5.30 p.m. After all that, I'd have been exhausted - but not her. She was just getting wound up.

She was going on about cats. There's a cat out on the road. Where's my cat? (Which one? There are five??) I want my cat to sleep on my bed. Let me get outside!

By now, all the cats hate her, even the very old one that now has only one eye, that she's had for 15 years. They all run from her. They hide under the beds, they race out through the cat door, they run out into the yard and under the house, anything to get away from her.

She says my daughter and I have made the cats frightened of her. Or she'll say that the cats must be sick, or injured - that's why they're running away. And so she gets herself in an even more paranoid state over it.

On Monday night my daughter went down the back to her flat and I locked myself in my bedroom. I kept reminding myself, just one more day and she'll be in respite. I just have to survive tonight.

Normally I lock the doors so she can't go outside and get hurt in the dark. But this time, I decided to leave them open. After a while it went quiet so I went to investigate out the front. She'd gone down the street in her pyjamas (no shame!) and was putting spoonfuls of chocolate pudding under each telegraph pole. I watched her. It was nearly dark. When she came back, I asked what she was doing. Putting out food for starving stray cats, she said. I told her that chocolate can kill cats and dogs. She didn't seem to care. Probably thought I was lying. She came inside and insisted on leaving the front doors wide open 'so the cats can get in'. I let her go and locked myself back in my room.

After a while it went quiet again. I thought maybe she'd gone to bed. I stayed in my room quite a while, then went out and looked. She was gone.

I went out to the footpath and there she was at the bottom of the street, talking to two Macedonian ladies, whose English wasn't too good. They saw me and brought her up to my front gate. They told me she was lost. Well, this is the first time she has ever 'wandered'. I knew that wandering was one of the major signs of Alzheimers, but she's never done it before. She's gone for walks and come back. I've never had to lock her in. This is a whole new symptom - wandering.

Back inside, she went into a psychotic state, with delusions, hallucinations and paranoia. I locked the back door, but not the front, she was so frantic to keep looking outside for cats.

I went back in my room. She refused to go to bed. I could hear her mumbling about people outside looking in, and how they could murder us all. I could hear her going 'Puss-puss-puss, where are you?' Poor cats!

She broke the back window (second time this week) trying to get outside to imaginary cats. She broke the handle on my bedroom door, trying to get in, presumably to whack me for not co-operating. She went in the spare room and threw things everywhere including the top of the dressing table, the curtains and curtain rod.

Around midnight she finally went to bed and fell asleep.

Someone once told me he was 'terrified' of his mother who lived at home with Alzheimers. I told him to snap out of it and stop being stupid. Now I know it is possible to be terrified of your own mother when she's in a psychotic state.

If I had gone out of my room, she would have attacked me, for sure, and in defending myself, I may have hurt her. This is why I stayed in my room. I considered calling the police, but here in New South Wales, if you call the police to a mentally ill person, there's a good chance they'll shoot them dead.

Tuesday, October 9, 2012

What the gerontologist said about Risperidone and other stuff

Mum has really deteriorated mentally recently. I decided to take her back to the gerontologist for further advice. 

I noticed she doesn't seem to be swallowing properly. I thought the swallowing thing was confined to the very last stages, but she seems to have it already. She chews and chews, tries to swallow, coughs, splutters and runs to the bathroom to spit it out. Then she abuses me over my 'horrible cooking' and the 'cheap cuts of meat' that I buy. But it happens no matter what she's eating. I'm really not sure if it's an excuse to have a go at me, or if she genuinely is choking. The gerontologist wasn't sure, either. 

She won't drink anything. She keeps demanding cups of tea, all day long. I sit her down in front of the tea. Often I'll try and stay there and keep saying "Take a sip. Keep drinking." But it doesn't work. Usually it's the thought of a cat that takes her away from the tea. Where's the cat? Is my cat inside? It's freezing out there. The cat will die of cold. And off she goes. I haven't seen her drink more than a mouthful of tea in weeks. She went to the dentist last week and he said her mouth was dehydrated and I should see the doctor urgently.

Tea was her main source of hydration. She used to drink it all day long. Now, she won't drink tea, she won't drink coffee, milk or water. 

The gerontologist thought maybe this refusal of sustenance is the beginning of something. We'll just have to wait and see. 

He indicated that treatment from now on should be palliative. He wouldn't advise operating if she had cancer, for example; but he would advise setting a broken leg to relieve pain. He's definitely against feeding tubes. So am I. 

He also said that we should try a small dose of risperidone. I've been against it in the past, when she seemed to be enjoying life, when she was able to make herself cups of tea, go for walks around the block, take herself to a shop and buy something. But I'm not resisting it now. I think if it makes her less afraid and less frantic, then it can only be a good thing.

Risperidone is not recommended for use in dementia. It's dangerous for elderly people. It predisposes them to strokes or heart attacks. But it also may calm them down, and may even give her a few more months at home. Normally it's a drug that's used to treat schizophrenia. Whatever Mum has, it's a lot like schizophrenia. I'm surprised people haven't said more about the similarities between Alzheimers and schizophrenia. A cure for one might lead to a cure for the other. 

If something doesn't change, she'll be back in a nursing home by Christmas. It can't go on like this. 

Monday, October 8, 2012

Calling for help

We have a 24 hour emergency Alzheimers nurse available. I've just had to call for help. Mum has been berserk this afternoon and tonight. She had to see the geriatrician and I think it unhinged her. She was already tired from being at Day Care and we didn't get home until 7.30 p.m. Getting her into the shower was a nightmare. She kept running out of the bathroom shouting "I want my cat! I'm not going in there until I see my cat inside!" The cats sleep OUTSIDE on the veranda. Bringing one in doesn't help - it just makes her more silly, because they're all terrified of her and run away. Then she believes they must be 'sick' and must be caught and taken to the vet. 

After her shower, she started running through the house looking for cats and shaking the doors trying to get out. I sticky-taped all the light switches so she couldn't turn on lights. That sometimes keeps her in her bedroom, but not tonight. She managed to find her way around, throwing a basket of clean washing all over the place (deliberately) and pulling pictures and crucifixes off the walls and curtains off the windows. She threw everything she could find on the floor.

After that she said she could see lights in the back yard, and there were people down there creeping around. Next she believed all the doors were open and she couldn't shut them. These people could get in. By this time I'd locked myself in my bedroom and turned up the music so I couldn't hear her rantings.

I've just had enough tonight. I'm sick and exhausted. I can't take another second of this and I'm looking forward to help arriving. 

I will kill myself before I will agree to go insane before I die, I really will.

Monday, September 17, 2012


My daughter is staying with me, temporarily, sleeping in the flat out the back. Mum is giving her a bad time. She says things like:

*I hate you. You're not my granddaughter
*You're trying to have me locked up
*Get out, I never want to see you again
*You're a liar
*You're trying to poison your mother and take the house
*This is my house, and I'm telling you to get out of it

As a result, my daughter doesn't really ever want to see her again. Who would want to remember their grandmother being like this?
I have lost my son, months ago. He was furious I've allowed this madness into our home. He moved out and he won't even visit.
Alzheimers has wrecked the remnants of our small family. My brother and his eldest daughter left the scene years ago. Mum didn't even get a call from them on her 86th birthday. They were in denial about the Alzheimers, and believe that I am taking financial advantage of Mum by lying about her condition.

This time of year, we always travel to the snow and spend a few days in a cabin out in the bush.

I wondered whether we should do it, given her terrible behaviour, and the fact there's only one toilet in the cabin, and she would be sure to dirty it at least once a day.

My daughter finally agreed to come with us on our snow trip.

Mum is generally well behaved when in the car. She likes travelling. It was a 7 hour trip up there (with a few stops).

At times Mum was horrible, but a lot of the time she seemed to be enjoying herself. And when we came back home, she kept saying, "I can't forget how beautiful the snow looked." So she's even remembering the trip, which is very surprising, given that she doesn't remember what happened ten seconds ago.

My daughter said this should be the last snow trip for her, as she was extremely difficult and the stress of keeping the bathroom clean, and using public toilets, was hard. But I'm glad we did take her this last time.

Dead Horse Gap - the snow starting to melt for spring

Hiking at Dead Horse Gap, Snowy Mountains Highway

Perisher Valley

Mum took this picture of our campsite

The Cascades, Dead Horse Gap

Mount Blue Cow

Two days of 'nice', thanks to the Commonwealth Bank

I can't believe it. For the past 2 days, Mum has been 'nice'. I can't recall any 'nice' days in years. She's always belligerent, nasty, paranoid and generally horrible. But yesterday and today, she's done nothing wrong. She's done everything I asked her to. She hasn't minded my supervising the toilet and shower. She hasn't demanded that the cats be let in at night.

It's funny, but on Saturday night I had to ring the Commonwealth Bank to re-invest Mum's money. It was the only time I had the time to do it. The lady who answered the phone could hear Mum playing up in the background and said she'd say a prayer for her.

Well, maybe it's co-incidence, but it appears to have worked.

Mum on Anzac Day wearing Uncle Jim's medals

Mum on her 86th birthday, 13th September 2012

Monday, August 13, 2012

Paranoia, Police and Hospital

Very bad afternoon. For the past three weeks, the Lexapro hasn't seemed to have been working as well any more. Symptoms were breaking through. She's been really obsessed with the cats every night, staying awake until midnight looking for them and wanting to go outside in the cold and the dark.

Today she went to Day Care, came home at 5.30 pm and wouldn't sit down to eat her dinner. She kept jumping up, shouting "Where's my cat? My cat isn't in here. Let me outside!" Well, it was dark outside and she would have fallen over, so I'd locked both the doors. I always lock the doors after dark.

This made her angrier and angrier. I couldn't distract her. She started saying crazy things, like someone is poisoning me and trying to take my house. She threatened to hit me across the face. She told me I was acting mad and she wanted to get the doctor for me.

I didn't feel too well. I was feeling dizzy and sick. I tried to find the phone number for the 24-hour emergency nurse but misplaced it. It wasn't anywhere on the internet. 

I tried to find the number of the gerontologist. I have a new phone and suddenly realized it's not on the new phone. I felt too sick and too dizzy to look any further. Later I took my BP and it was 157/113. A wonder her behaviour didn't kill me.

I finally decided the only course of action was to call the ambulance. By this time I'd locked myself in my room and she was hammering on the door, rattling the handle and trying to break the door down. She also threatened to smash the windows to get to the cats. There were already two cats inside. I decided long ago that though they usually sleep on the veranda, it's best to bring one or two in to keep her happy, but tonight for some reason she remembered there were more than two cats. 

I'm not sure I've seen her as crazy as this before. I wonder if she'll actually come out of it, even with the help of more medication. I wonder if she'll always be like this from now on and I won't be able to keep her at home any more. 

I remember when my great grandmother died, she had a bad episode of paranoia and had to be taken to hospital. She died soon after of a stroke. I think she got herself in such a state she caused the stroke.

But my great grandmother, who was the same age as Mum is now, didn't have severe dementia. I'm not sure she had dementia at all, until that day she suddenly went paranoid. 

My great grandmother died on 10th July, 1975. She looked just like Mum, very short and thin. She had agoraphobia and hadn't left the house in 40 years until the day she died. 

I will try and get some sleep, but at some stage the doctor will ring and speak to me, and that could be two in the morning, so I'll be listening for the phone.

Because I feel so sick, I didn't go with her to the hospital. I have to look after myself sometimes.

Footnote: I forgot to mention, the police got here first, as the ambulance always call them when people are acting crazy. The neighbours came in to try and help. Finally they got her into the ambulance, protesting all the way. 

Sunday, May 6, 2012

After three years, noticeable deterioration

I have noticed a few changes in Mum's condition over the past few weeks. I must re-read some of my previous posts and makes sure I'm not repeating myself, but I'm pretty sure these changes are recent. For around three years she seemed to be fairly stable. Her condition didn't worsen or change, really. But I have noticed these things.

 *She has trouble boiling the jug to make a cup of tea. As soon as it starts making its 'ssssshhh'-ing noise, meaning it's on and going, she turns it off, pouring cold water into the mug.

 *She's often putting only an inch of water in the mug as well. She was very good at making tea until about a week ago. Tea has been her whole life.

 *After I have taken over the tea-making process and sat her down with the mug, she wanders off, not drinking any of it. This is so annoying and it means I have to stay with her while she drinks it, otherwise she's going to get dehydrated.

 *She wanders off in the middle of eating, if I don't stay there and keep telling her she's eating dinner and needs to get the next forkful of food. If I put the food in front of her and leave the room, within ten seconds she's somewhere else - outside looking for cats, or in the loungeroom turning on the TV. And I mean 'ten seconds'.

 *She's completely lost interest in the TV and cannot follow anything including the news. She started turning the TV on and off, on and off at the power point on the wall, until I had to put sticky tape over the switch to stop her doing it. Now, if she wants the TV on, which is all the time, I have to do it with the remote, and it's a total waste of time because seconds later she's left the room and is telling me to turn off 'that horrible noise'.

 *Her hearing seems to have changed. She can't stand any sound at all, not even the door softly closing. If a neighbour is hammering in a nail, she goes berserk over it. "I can't stand that terrible noise!" she shouts, and tries to grab all five cats and drag them inside before the sound 'terrifies' them. They're not concerned by noise at all. A dog barking in the distance, a chair being placed under a table, a door closing, dishes being placed in the drainer, all these are 'terrible noises' and I have to make them stop. This is really odd and I've never heard of anyone with this symptom before, where sounds appear to be amplified.

 *She's not completely competent in the toilet any more. I've found poo on the toilet seat quite a bit, toilet paper that should have been flushed away on the seat, on the floor and in the handbasin, poo on the wall where she's got it on her finger and tried to wipe it off and a lump of poo on the bedroom floor which has fallen out after she's left the bathroom. I really can't stand poo and this is disturbing me greatly. Please no more poo!

 *She can't get dressed at all. She can't find what to put on and it's not her vision, it's just she has no idea what to put on first. I have to pass her all the items of clothing she needs one by one and tell her which way round to put them. She's also started staying in her pyjamas for hours every morning, something she's never done in her life, maybe because trying to get dressed is becoming too stressful.

 *She doesn't go out for walks on her own. She's frightened. She's never been prone to getting lost and has always walked down the street and back, but not any more.

 *She hasn't been able to adjust the water in the shower for at least a year and I've been doing it, but she nearly scalded herself the other day when she turned on only the hot tap when I wasn't looking then tried to get under the shower. Just as well I got there in time.

 *She no longer knows which cat is hers. Her cat is called Cleo, it's 16 years old and incontinent, so it can't come inside. She has no idea what its name is and I think in a previous post I mentioned she calls every cat 'he' or 'him'. But this is working well because I just pass her any cat and tell her it's her cat and she's happy.

 *She can't work out family relationships. I put her on the phone to my daughter and she said she was talking to her 'niece'. She can't name her grandchildren at all. She doesn't know if my brother has any children and when told their names, knows nothing about them, though sometimes when we're shopping, she'll want to buy a babies' book for 'little C.' (he's 17) or a doll for 'little Ca' (14) or a toy for 'A' (now 21 with her own daughter).

 All this is extremely frustrating. She can't let me out of her sight. I can't even walk to the letterbox without her getting in a total panic and calling out for me. She'll also wander round the house when she can't see me, saying over and over, "Where is she? Where is she?" Where once she was happy to sit out on the veranda with the cats, now she can't settle there at all. By 4 o'clock in the afternoon I've had enough. I am stressed out of my brain. I can't take any more. I still have to feed and shower her and I'm exhausted. And around this time she starts obsessing about the cats more than ever. She wants them all inside for the night. She gets very angry and nasty. I end up yelling. But I can see the difference with the medication. It's not quite as bad as it was, and through the day I can manage her all right.

 I must convince myself not to tell her anything, though. I must never mention it might rain, or the car needs fixing, or I'm going shopping tomorrow, or we need more cat food. If I tell her anything at all, it disturbs her and sends her into a panic. Bad weather specially terrifies her. I keep forgetting, I could kick myself, and I hope I can remember to speak only about the present and the things that are currently surrounding her. "Here's a cat to sit on your knee", "Have a cup of tea" or "Come and sit in the loungeroom" are safe things to say.

Out the front early in the morning wearing her pyjama top and looking for non-existent cats that have escaped onto the footpath.
Mr Fuzz...such a cute cat, but fairly feral and does not like her picking him up.

Friday, April 20, 2012


Mum and I have always been against taking pharmaceuticals of any kind. I have had to go onto blood pressure medication because nothing else worked and it was getting very serious - 180/110. But other than that we don't take anything. I think it's great that up to the age of 85 Mum has not taken these damn poisonous things. But there comes a time when you get so desperate you have to try something to alleviate the situation.

I am perfectly aware that medications of all kinds will shorten your life. But in Mum's situation, I think I would want my life shortened in any case. Who wants to have the Alzheimers get worse and maybe live another ten years. Sometimes I think Mum will outlive me, she is so fit. She can walk miles.

I took Mum to see Dr Pearson due to her extreme agitation and imagining people who aren't there. I thought I wouldn't want to be suffering like that if I had these symptoms and since they can't be reversed, I would probably agree to take something to help me feel calmer.

Dr Pearson said he believed Lexapro might help and that we should give it a try. Well, she's been on the Lexapro for 3 weeks and she's a lot less agitated and slightly less cat-obsessive. I haven't seen any bad side effects so far. If it makes her sleep less, that's good, as she was going to bed at 5 p.m. and getting up at 7 a.m.

I suppose you have to find something that suits the person and relieves the symptoms, and I was just lucky the first thing we tried seems to have worked.

The Cat Problem

The last three months since I brought Mum home from the nursing home have been very hard. I didn't realize how bad her psychotic symptoms were, the hallucinations and the obsession with cats. She was keeping me up half the night hammering on the front and back doors, demanding that the cats be let inside (all five of them). Her cat is 16 years old and incontinent so I'm not having it sleeping inside no matter what. I had to deadlock the doors and lock the back window to stop her getting out. It was terrible.

Mum tries to get out the bathroom window to the cats in the middle of the night. Her hand is bandaged to due an attack by one of my feral cats that didn't want to be picked up and carried.

I finally hit on the idea of bringing in one of the cats, called Tapir, to sleep on her bed. She's got so bad she no longer knows which cat is which and calls them all 'my cat' and they are all 'him' or 'he' even if they are female. Tapir is very good - he comes to my room when he needs the toilet and taps on the door so I can let him out. I am not going to do cat litter ever again - it makes me sick. To stop Mum locking him or any cat in her room I had a handyman install a door stopper so it won't close completely. So now I say to her every night, "I am putting your cat on your bed" and she's happy with that. She thinks it is her old cat Cleo. Having one cat on her bed stops her from going after all the other cats every night. Even when it starts pouring with rain, she stays in her bed and doesn't jump up and demand that I go out and 'save' the cats. They don't need saving, they are sleeping on a covered veranda.

Thursday, March 1, 2012

Mum Comes Home

Mum has been living at my place for several weeks. During the day, she is mostly quite good, but in the evenings and at night she can be awful. Tonight I thought she was in bed but I heard something bashing on the wall. I went in and she was standing in the corner of the room banging on the wall. I asked what she was doing - she replied, "Every night a woman gets into the roof and tries to get into my room." I am really not sure what to say to that. I have kept her off psychiatric drugs until this point in time but I'm starting to think something very strong is in order. The ethical problem is, all these drugs shorten your life. Alzheimers is so much like schizophrenia.

Saturday, February 4, 2012

Mum's First Day Back Home

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.

Friday, February 3, 2012

Out of the nursing home, into the fire

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