Content Warning – contains descriptions of child abuse.
What to do with Mum is always such a challenge – particularly if I don’t know what I want to do myself.
We went out for a walk with the pretext of buying milk. Mammy was looking upset again. “I’m so scared,” she said “I can’t DO anything and I don’t know what’s going to happen.”
“It is scary, but you can walk and talk, sing and dance, eat and pray and you can love. That’s quite a lot of stuff that you can do well and I think it’s very important stuff. The other things we can help you with.”
Mammy certainly can dance – she does a very seductive, fun dance and can still jive. Once, they had an outing at the ‘Broad Glade Day Centre’ and Mum returned with a certificate for being ‘a beautiful dancer and a lovely presence on the stage’. She is happy when dancing – especially to rock ’n roll. She loves blue grass too. It always surprises me how deep into the soul music must go, as many people can forget their own name but still manage to sing-along to an old tune.
Today is Monday again and we’ve done the school run, had tea and a chat with Pat (we visit her on the way home several times a week), been up to ‘Take-a-Break’, done some shopping and assessed the growth (and the storm-damage) in the garden. The air smells fabulous today – like the air you smell when hill-walking: fresh green, muddy fragrances – full of warmth, heady-sweet privet, elder flower and promise somehow?
The O.T. is here now, doing an activity with my crafty mum. I’m trying not to listen, but it sounds like she’s taking some encouraging.
Yesterday I picked up a book and read the first chapter “What is Alzheimer’s disease”.
I must admit that I found this a little alarming:
“The form of Alzheimer’s disease that is definitely known to be passed on…in the genes, is extremely rare. It is very unlikely…unless close relatives have developed the disease below the age of 60…If your family does…you are only at risk if your mother or father developed it. If…you have a one in two chance of developing the disease…a genetic test … could be requested to confirm whether or not you do in fact have the gene…” (page 5) [Notes 1]
Now that’s not very encouraging. I will banish such thoughts. I have no intention of carrying or developing such a horrible disease. Nor Debbie.
It also says “Up to the age of 65, Alzheimer’s disease develops in only about one person in 1,000.” (Page 4)
One other fact that I found interesting, considering they seem to know so little about what actually causes the disease, was the description of what would be found in the brain of an Alzheimer’s sufferer at their post-mortem –
“…Diagnosis… usually depends on finding characteristic changes in the brain tissue…Spread throughout the brain…are deposits, or plaques, made up of an abnormal protein called beta amyloid. A further abnormality is the occurrence of tangles of twisted protein molecules within the nerve cells of the brain. Other features, also found in other dementias, are shrinkage of the brain and widespread death of cells.” (Page 3)
Another thing they find in post-mortems is a lack of acetylcholine – a neurotransmitter – in the brains of people who have had Alzheimer’s. That’s why they give the ‘Aricept’, I believe. But we don’t seem to know what causes all these proteins and plaques to develop.
The book also offers a rough guide to the likely progression of the disease, in terms of symptoms. They list ‘early’, ‘middle’ or ‘late symptoms’. Reading through them for a ‘best fit’ assessment myself, I can tick off everything in the ‘early’ and the ‘middle’ lists for Mum and even put hesitant ticks on half of the symptoms listed in ‘late symptoms’. (page 10) [Notes 1] – I have listed these stages in the Appendix [App.1]
So we’ve got more to look forward to yet. It is all quite vague though. The last time we were at the St Peter’s Wing, the doctor did a memory assessment of Mammy. She scored ‘9’ out of something, but apparently ‘less than 12’ (out of that same something) indicates a severe memory impairment. They asked lots of questions about what day, month, year, and season we are in and, mostly, she doesn’t have a clue. Personally, when my own routine is disturbed – e.g.: holidays – I don’t know what day it is either and I usually have to check what the date is now that I am not teaching.
And what does it really matter?
Some new and significant events do register and stay in her mind and recall though: last year when I told Mum that I was getting married, she consistently said she wanted to come. When it was arranged, apparently she told lots of people in Orkney and on the phone, that she was coming to my wedding. More recently in March, the tragic, accidental death of our dear friend, Roger, was an event she recalled frequently over the weeks until the funeral, which we were fortunate to be able to attend. I suppose the fact that these events were so significant was the main point.
Anyway, the doctors here figure that the ‘Aricept’ – which was supposed to “reduce the breakdown of acetylcholine in the brain” – doesn’t help with severe Alzheimer’s disease anyway.
I looked at ‘page 39’, to see what they say about the genetic test for family members. Apparently it is a simple blood test to see whether or not I could be carrying the gene that has caused Alzheimer’s disease in my mother. I probably won’t do it though. I want to live in faith in God, not under a medical prognosis. But I might try some vitamin B12 and B1 supplements, which are supposed to help keep the brain healthy anyway.
This is all technical stuff, but it is very interesting and worth knowing. I know what to pray against for myself and my boys too. (And for my sister and her children.)
The Alzheimer’s website has a simple checklist:
The seven warning signs of Alzheimer’s disease are:
1. Asking the same question over and over again.
1. Asking the same question over and over again.
1. Asking the same question over and over again.
2. Repeating the same story, word for word, again and again.
3. Forgetting how to cook, or how to make repairs, or how to play cards — activities that were previously done with ease and regularity.
4. Losing one’s ability to pay bills or balance one’s chequebook.
5. Getting lost in familiar surroundings, or misplacing household objects.
6. Neglecting to bathe, or wearing the same clothes over again, while insisting that they have taken a bath or that their clothes are still clean.
7. Relying on someone else, such as a spouse, to make decisions or answer questions they previously would have handled themselves.
[See Appendix 2: useful websites.]
My sister, Debbie, will be coming to Nottingham next Tuesday. Debbie and I are not alike. We see the world from very different perspectives. I haven’t seen her since Christmas, just before Simon and I decided that Mum would not be returning to Orkney. She has lived in Spain for about 13 years with her 3 children. She has ‘Enduring Power of Attorney’, so I have had to update her regularly on what’s been happening medically and decisions that need to be, or have been, taken. It has been particularly difficult for the various agencies involved, because technically, Debbie is supposed to give her permission – and sign forms – for just about everything. Fortunately, however, the system is mostly humane enough to allow me, as ‘main carer’ and ‘other daughter’, to get on with the nitty-gritty, day-to-day stuff, without too much ceremony.
I have found the situation a little frustrating. Not that I want the legal as well as the practical responsibility, but when the Enduring POA was set up, in Orkney (under Scottish Law), by Debbie and Mum, I was given the impression that we had joint-POA. Apparently though, I only have authority to act on Mum’s behalf if 1. Debbie dies (God forbid), or 2. rescinds her power. She doesn’t intend to do either.
Life is like that sometimes.
I would strongly advise anyone caring for a relative with dementia to make sure that POA issues are settled early on, as the dementia sufferer has to be ‘of sound mind’ to sanction it.
(See Appendix 2 for details about Power of Attorney issues.)
One theory I have always had about Mum (but may not be the case at all), is that the reason she has lost her memory is because she has lived in denial of the truth for most of her life. For much of her life, I do not know the real truth, I just know that she has hidden it. Growing up, there was so much horrible stuff happening, that both parents – but particularly Mum – would deny. They lived in a world of preferred make-belief.
My own memory of my early years is very patchy and I have used therapy to make sense of some of what I consciously remember. ‘Stuff’ from my sub-conscious memory managed to surface from the hidden depths and revealed itself too during my therapy. But I want to know what has affected me. How much more has she hidden?
I do remember that Dad would beat her up quite badly at the caravan when I was a little girl. And now we know the real story of Mum’s burns. Later, it was me who became the victim. I’m not looking forward to telling you about this next part. The thought of it makes my chest go tight, but it is an important part of the story. Please remember not to judge.
I don’t know when it all began, I only know when I became aware of things being uncomfortable. In good moods, Dad was very physically playful and we would tickle fight, carry each other and tackle each other. I became aware of not wanting him to tickle me in certain places and of being embarrassed when he playfully checked that I wasn’t developing ‘a hairy chest’. I began to dread the playful moods nearly as much as the bad moods. One day Dad and I went on a long bike-ride, back to visit the old caravan. It felt very strange going back through the site and seeing the trickle of a stream that had once been my world of play. Somehow we got into the caravan through a window. We sat on the seat that was once Debbie’s bed and mine. He began to kiss me inappropriately and to take off my clothes. I started to cry, but he continued. I was so scared, but he seemed surprised and disappointed and tried to talk me into it as he touched me and explained how he loved me and wanted to show his love; how love begins at home and this was what he needed to help him; he loved me and I could help him feel better and no one needed to know; I would enjoy it if I would let him; it wasn’t hurting anybody; it was good. I sobbed more and more, pulling away and going rigid and shaking. Eventually he got angry and stopped. He had not had what he had hoped and was very disappointed and ‘hurt’ by my ‘lack of love and understanding’. He left me to get ready and we cycled straight home, my legs like jellied lead.
From then on I was even more terrified of him, especially being alone. Every time we were alone he would ask me again to ‘cuddle’ him; he would plead with me and tell me why I was selfish, just like my mum, causing his depression and making him ill.
I knew I could not say yes. If ever I could speak, I would say, ‘What about Mum?’ or ‘But you’re my Dad!’ I didn’t dare tell him that I just didn’t want to. For some reason, he thought that me being his daughter made it more right than if he went to a stranger.
This went on for the next six years until I left home. Some days he would go on until I cried, then he would hit me and go away. Some days he just went on trying until someone else came home.
Twice he held a gun to my head, after me watching him put the bullets in, then he pulled the trigger. Once, having packed to go on a school trip to France, Daddy played Russian Roulette as I waited, desperately praying that I would be able to leave the house.
Some days I hoped that something awful might happen to me whilst out and about – having an accident or being kidnapped – so that I would have a good excuse not to go home and if I was dead, it would ‘serve them right’. Then it would no longer be my fault. It might make him happy. It might make him stop. I know it was to his credit that he didn’t ever force me sexually, but I still wonder if it would have put me out of my misery. I also feared that he might stab or strangle me instead, so I used to sleep with my back to the wall, one arm covering my heart and the other shielding my neck. I still sleep more peacefully like that.
At the time, no one admitted to knowing anything. I certainly didn’t dare tell a soul. As for many poor children in this world, it was the dreadful secret. I often wondered whether my mum hadn’t guessed what he was doing. Eventually I confided in my Isabelle, but I knew that if any word of complaint got back to Dad, my life would literally end.
About five years before he died, at our last meeting in Orkney, I told Dad how devastating this had been for me, but his response was, “I’m sorry I hurt you. You were still too young.”
About the age of 13, I had become a Christian. I still know, as I did then, how much God had protected and encouraged me throughout this time. I was also grateful that He had sent other wonderful people into my life to affirm me. I know He preserved my life.