Get me out of here, I hate it!

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

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

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

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

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

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

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

What sister in law?

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

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

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

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

Four months later...

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

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

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

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

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

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

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

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

The latest, but not the greatest news

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.