Monday 24 August 2015

Raising the profile of Alzheimer's disease and dementia

As you know, my main purpose for doing this sixtyat60 challenge is to raise money for Alzheimer's Research UK.  When I first started writing my blog nearly 3 months ago I wrote a post about my mother in law Grace to explain why  I've chosen to support ARUK.  Since dementia is such a common illness, I’m keen to ensure that this blog represents the experiences of other people who have been affected in one way or another by dementia.  So every few weeks, I’m going to publish a post in which a friend or neighbour of mine tells their story. In this post, Angela describes her auntie Betty and her mother-in-law (a huge thank you to Angela for sharing her story).

‘Auntie Betty was actually my father's cousin, making her my second cousin, but I'd always called her "auntie." In spite of being engaged twice, she never married, simply because the love of her life was a 400-acre farm in Wiltshire and she couldn't bear the thought of leaving it. The farm, Dudmore Lodge, was bought by her father in the 1930s. Originally it was a mixed farm, with cattle, pigs, chickens alongside the arable land. By the time Auntie Betty and her sister Margaret were running it, it was just arable.
 
Auntie Betty's parents died in the 1970s, as did Margaret in the 1980s. So from then until she went into a home in 2007, Auntie Betty ran the farm single-handedly - an unusual feat these days, let alone then. She took on a young man to help and he eventually managed it for her, though she remained very much in control of absolutely every aspect of the farming. She was very, very stubborn and was reluctant to move with the times. This meant that the farm was run very much along the same lines as her father had run it in his time.
 
We first noticed that there was something wrong with Auntie Betty when she started falling and not being able to get up easily. Alongside this the house and garden became increasingly down-at-heel and neglected, but we just dismissed that as her not caring about the appearance of things, being concerned only for the farm. Then her driving became a cause for concern. She only ever drove into the village down the hill, but when she got through three clutches on a year, we realised she wasn't getting out of first gear! Then there were reports of her driving down the hill, taking a wrong turning and not being able to work out how to turn the car round and get back on the road. The GP refused to act, so eventually we simply took the car keys away, to prevent her from hurting herself or someone else.
 
In spite of all these early signs, Auntie Betty was, I now realise, very, very skilled at playing games - in other words, keeping up appearances designed to convince the world that everything was OK, she was as she always had been, completely in control (we noticed the same thing with my father-in-law more recently, so I wonder if this is an aspect of dementia - the pretence, which, of course, loved ones are only too happy to believe.) 
 
I think we finally acknowledged the seriousness of the situation when Auntie Betty allowed herself to be taken advantage of by a family who had bought one of the bungalows on her land. We discovered that they persuaded Auntie Betty to sell them parcels of her land at prices way below their market value. They did this more than once and were so very crafty about it. Their young son befriended Auntie Betty and used to visit her after school. She loved his company and so was completely taken in by the whole family and for a while wouldn't hear a word said against them.
 
Next came the uncharacteristic behaviour. Once she hit me on the arm for no reason, quite hard. Worse still was her comment of "cocky little bitch" when I was sounding off about something. It was possibly deserved, but it was so embarrassing as it was in front of other people and was completely atypical, as I knew she was very fond of me. I guess it was just what she was thinking at the time, only she spoke it rather than keeping it to herself.
 
The falls became more frequent and she went into hospital more than once. After one stay in hospital, she went home with some sort of care package, with social workers visiting her on a regular basis. She refused to move her bedroom downstairs, there was another fall, another stay in hospital, after which we persuaded her to go into a care home in the village "just for a rest." She was well looked after and became happy to be there. Its’ very local situation meant that she had lots of visitors. I remember an Open Day there once. I sat next to Auntie Betty for lunch and was much amused to see her eating not only her own food, but also anything she fancied from her neighbour's plate!

Auntie Betty lived for about two years after moving into the home, which is, I believe, the average. It was a sad end to such an exceptional life, although I guess the beauty of it was that she had no inkling that she was losing her mind and so was content'. 

A brief word on my mother-in-law, who is about to be 95 and has been in a care home in Guildford for five years now. She was always a rather difficult, disgruntled woman, who showed little affection for anyone. Strangely, now she has vascular dementia, she is a much nicer person! She even makes approving remarks when in the past there was only criticism. So now it's a case of "Angela, you're looking good!" rather than "You shouldn't wear that colour - it drains you!" The saddest thing, though, is that she forgets that my father-in-law has died and keeps asking my husband Peter where he is. He tells her, she denies all knowledge of it, even though she attended the funeral, and then five minutes later asks the same question. Yet she manages to remember everyone's name and asks after our grandchildren by name, which seems quite extraordinary.'


If you'd like to describe your experiences of caring for someone who has dementia, do please email me at sixtyat60challenge@gmail.com.  It could be just a few words,  a few paragraphs or an extended story. I'd be really pleased to hear from you.

For further details on Alzheimer's Disease and dementia, visit http://www.alzheimersresearchuk.org/ or  http://www.alzheimers.org.uk/

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