Grandma's Birthday

I'm writing this back in April, having just been to a meeting of the WI where the speaker was talking about dementia. I wasn't much looking forward to going but I had things to discuss with other members and so I resigned myself to sitting through the meeting. It was much better than I expected - I actually laughed a few times.

Clara Rose (1890-1974)

The speaker had great passion for her topic: she worked on a ward for people with dementia diagnoses and her mother had dementia. Her presentation was part of a major initiative by the Alzheimer's Society to educate people in England about dementia. They had already met their first target of talking to a million people; we were part of the journey to the next target of 4 million. We played word Bingo and some sort of Simon Says game where we all pretended to be 73 years old with a six year history of dementia. She used a wadded string of fairy lights to serve as a model for the parts of the brain. She gave us a card afterwards to highlight "five things you should know about dementia":

• It's not a natural part of aging
• It's caused by diseases of the brain
• It's not just about losing your memory - it can affect thinking, communicating and doing everyday tasks
• It's possible to live well with dementia
• There's more to a person than the dementia

It wasn't until she got to this last point that my fairy light flickered and I remembered that Grandma had dementia. That's major progress, as it used to be the main thing I remembered about her. I got to scribbling some notes at that point and I'm writing this now while I still have a chance of remembering what they mean.

Though dementia is not a natural part of aging, about a third of us will develop this after age 65. She pointed out that it doesn't happen the day after our 65th birthday, some people develop this quite a while after that time. Dementia is caused by several diseases, the most common of which is Alzheimer's, followed by vascular dementia. I got the impression that a fair number of women present had experienced loved ones with dementia as the variety of types called out was wide - more than I knew about. I don't think Grandma ever had a specific diagnosis back in the 1960s or 70s. Given her history of stroke, perhaps she had vascular dementia. I'd not thought of dementia as an umbrella term for a set of diseases of the brain; and why shouldn't the brain be vulnerable to disease just like any other organ in our body?

The fairy lights, meaning the parts of the brain, could flicker off and on; they could grow dimmer but remain lit; or they could just go out. Presumably there are analogous brain functions but she didn't really go into further detail. She did say that besides memory loss a person's thinking might be affected in a variety of other ways. They might confuse words and start calling something by a different, incorrect name. They might perceive things differently, for example a shiny floor might look wet; a black, rubber mat might look like a big hole; a patterned carpet might look like it's moving and be interpreted as 'snakes'. They might have trouble with logical order and have trouble dressing themselves, ie putting socks on over shoes.

In addition to the fairy lights another analogy the speaker used was of book cases. She asked us to imagine a person with dementia standing next to a bookcase the same height as themselves. This was a bookcase of facts and events in that person's life; let's say she is in her 80s. The books on the top shelf are the most recent events of her life; books at shoulder height may be from her 70s or 60s; the shelf at knee height might be from her teens; you can fill in the rest. She said the bookcase could be likened to the part of the brain called the hippocampus, where information is stored. 

We were asked to imagine the bookshelf rocking quite hard. She then told us to imagine the bookcase is only made of plywood and so it will move quite a bit when rocked. Of course the books nearest the top are most likely to fly off the shelves but the older memories are more likely to remain. This is a familiar concept to any of us who have known someone with dementia. 

She gave us some examples of events for our imaginary person, who was in her 20s in the 1950s. She used to put on her tea dress and her lippy for when George was going to come for her and take her down to the seaside for a bag of chips. Other memories were about raising children, having a part time cleaning job to help make ends meet, losing George to a heart attack (I'm making up some items that my own holey brain has already lost, but you get the idea).

Then the speaker asked us to think of a second bookcase on the other side of the person. This bookcase has the emotions associated with the facts and events shelved on the other one, but the emotional bookcase doesn't rock so much; perhaps it is made of good old English oak. The emotions remain. That part of our brain is called the amygdala. 

The speaker mentioned two scenarios that must be very common for families of persons with dementia. One is when there is a big argument and everyone gets upset. The family may comfort themselves that Mother doesn't remember a lot of things and she'll not remember the fight. She may not remember the fight, but she may well remember being hurt and angry. This may influence her behaviour in ways that don't make much sense to other people. 

Another scenario is where Mother keeps forgetting who they are when they take time from their busy schedules to come see her. They begin to think it doesn't matter if they don't make such an effort, since she doesn't even remember who they are. She may not have the facts straight about whether it's George Jr or her brother Henry, but she remembers feeling loved and wanted. So it is worth them coming to see her even if they don't get the response they would like to have. 

It is the last two of the five points that surprised me the most, and I gathered a few others there as well. I'm not sure everyone agreed that one can live well with dementia. I took away that a lot depends on what stage one is at and on having the right support - that is people who understand dementia, which is part of the purpose of this educational programme. I can see how a person with early dementia who is well supported could still enjoy life and perhaps even in later stages, though I'm not sure how one can tell. 

The last point she covered was to remember that there is more to a person than their dementia. An example she gave (fictitious or not, I've no idea) was of a woman who lived in a care home. She had the habit of tapping on any surface near her, tapping all day long. This drove the people around her nuts. One day her niece from Australia came to visit and they asked about the tapping. The niece didn't know why she did that. However, they were talking about her aunt's life and she reminded the staff of something they already knew, that the aunt had worked at Bletchley Park, where the Enigma Code was broken. They began to surmise that the aunt might believe she was tapping out Morse Code. Just holding that idea and remembering that this person had made an important contribution to winning WWII made everyone tolerate her tapping much more easily.

That's the point at which I remembered Grandma, who died when I was 18. She'd been senile since I was about 12, possibly before. I always thought of her as that 'dim housewife'; I thought that had she done anything to exercise her brain she might not have succumbed to dementia. Talk about blaming the victim! I think that's something we often do these days: comfort ourselves that bad things won't happen because we exercise / eat right / wear seat belts / etc. Grandma's dementia just took the form of her seeming to be lost all the time, even in her own home. She didn't have much to say at all, didn't remember the simplest of self-care routines. She seemed to just walk around the house picking things up and putting them down - sometimes somewhere they couldn't be found. She would sometimes remember to latch the screen door, though, particularly when Grandpa was outside taking care of the back garden! The poor man worked hard to take care of her in their last years.

I've written on this blog how angry I became with Grandma in particular when I learned (at age 54) that my Dad was adopted, decades after everyone else involved had died and I couldn't get any explanations. Over time, writing these posts, talking with people who remembered her before before dementia and piecing together observable traits from the pictures and clippings she carefully left specifically for me I have strangely forgotten her dementia. I know that she was lively, passionate, loving and dedicated. She 

• was devoted to all her family
• wrote hundreds of letters to siblings and extended family members
• was literate and expressive
• loved pretty clothes
• desperately wanted a son child! Having got the adoption papers I now know she initially asked for a girl!
• was fascinated by family history
• was frugal
• was perhaps spiritual rather than religious, as they seemed to change churches periodically, but Christian beliefs remained central
• took pride in keeping her home tidy and pleasant

When I visited the link provided on the WI website and learned that we would be asked to become 'Dementia Friends' I was determined to say no. Although they said it didn't mean making any commitment to do anything like visit nursing homes and have tea with doolally residents, I was sure there was a catch. Turns out they wanted people to spread the word about dementia, just as I've just attempted to do.

Looks like they caught me after all...