Monday, November 22, 2010

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.

Wednesday, November 10, 2010

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.