The latest, but not the greatest news

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?

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

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

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.....

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

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

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

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

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

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

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!

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

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

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

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

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

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!

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

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

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

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

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

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!

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

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?

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

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

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

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!

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

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

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

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

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

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

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

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

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

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.