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'Still Alice' missed a dreadful aspect of my father's Alzheimer's torment

I've just finished reading and thoroughly appreciating (can I enjoy a book about Alzheimer's?) Still Alice by Lisa Genova. I was fortunate enough to have been in this TED audience in 2018 when Lisa, herself a TED delegate, told us her story. Still Alice is a fictional account told from the perspective of a middle-aged Harvard Professor who develops Early Onset Alzheimer's Disease (EOAD). The reason Lisa picked EOAD rather than the far more common form of Alzheimer's affecting up to 80% of people suffering dementia (8% of us will probably develop dementia) was to explore how a woman in the prime of her life (career, marriage, family etc) might experience progressively losing everything she previously took for granted, whereas we might expect elderly people to have already lost memory functions as well as their careers and possibly their spouses by the time they develop the disease. It was a powerful and deeply moving story which I commend everyone to read.

It echoed a great deal that my brother and I experienced watching the slow and horrible decline of our father, Norman, from Alzheimer's... a disease he always dreaded developing having watched both his own parents slowly decline and die from it. His own journey through noticing occasional memory lapses, to his diagnosis, management and then determination that his version of reality was correct and that everyone else was either deluded or deliberately mendacious for paranoic reasons only making sense to him, and eventually his death - in all about 10 years of decline - was incredibly hard to witness (and very scary to know it might one day happen to us). But my brother and I developed placating strategies to help him, and us, cope with his delusions in the early days (at least we assumed everything that didn't make sense to us was a delusion... maybe some weren't, but reluctantly we eventually realised it was a waste of our time checking everything he said was fact when we knew that very little of it could possibly be true). All of which was made infinitely harder by our father in his 80s being the official carer for our even more elderly and dementia-suffering mother (not Alzheimer's, but not without its own challenges and despair).

It's a long and painful story that I might share in another blog post one day, but suffice to say with the help of live-in carers and hugely supportive neighbours (mostly - although one was dreadfully cruel), we delayed for as long as possible our parents being taken into specialised residential care. Their one stipulation they made while they were still both able to recognise and communicate with us, was that they never wanted to be parted from each other. If one needed to go into a home, they both went. But of course it took a long time for one to decide that the time was right for the other. Understandably, neither wanted to go themselves.

So to delay the inevitable for as long as possible, we hired two wonderful live-in carers who rotated every couple of weeks. Over the course of the next year, they struggled more and more to cope with Mum's increasing frailty and confusion combined with Dad's determination to wander off and get lost (they lived in a small flat on a rural estate). Unfortunately he was also using increasing aggression and even violence to persuade them to open the door for him as his frustration grew in proportion to his confusion. He had a very nasty latent temper... about which, more later.

Eventually we all realised that the time had come for them both to be transferred to a specialised nursing home a few minutes from where I lived (previously, my brother, my wife and I had to travel some distance for our weekly family meet ups). Fortunately it was easy to persuade Dad that Mum needed better help - especially after she had a fall - whereas he believed that he was still coping. Truth was, both needed 24/7 protection and care.

To begin with at the home, because they were there together in a small private suite, it was a huge comfort to each of them knowing that they were there for the benefit of the other. Dad believed the only reason he had effectively incarcerated himself there (just as described in Still Alice, there were security keypads on exits that relied on residents not remembering the code) was to have staff available to help look after Mum. And Mum was resigned to living there in order to make sure Dad was being looked after - since she knew she was no longer capable of feeding and generally caring for him as his wife and quasi-mother. Mum mothered everything and everybody. She also suspected something was 'not right' with Dad these days.

For a while, it worked. But as Mum approached 97, what little strength she had completely failed her, and she finally lost the will to carry on. She missed her home and became totally dependent on carers for all her physical requirements. It must have been hugely frustrating and humiliating for her to be treated as a doubly incontinent paraplegic unable to do anything for herself and just dumped in a wheelchair in front of a strange TV or dining table, surrounded by people she didn't understand (and who didn't understand her) - although the staff were very special and the home itself was top class. By then, Dad wasn't making much sense, so she had effectively lost him too. When she finally passed away, Dad didn't know he was married, let alone that his beloved Pearlie had been living with him. Despite over 60 years of very happy marriage, he was blissfully unaware that she had died. At her funeral, he believed that he was attending his own mother's funeral (who by blessed coincidence was also called Pearl) and that his own Pearlie was somewhere in the kitchen. 

If Alzheimer's has any redeeming features, then oblivion about things that would otherwise have been extremely painful is the only one I can think of. Indeed around the same time, my father-in-law lost the love of his life and suffered greatly as a result for the rest of his own life. Going first is definitely the easy option. And if that doesn't happen, not knowing about it is the next best thing.

As Still Alice explored, Dad's recognition of everyone and everything around him regressed back to earlier periods in his life where memories were hard wired in. Explanations for what snippets he overheard, or questions being asked of him, or things he randomly spotted often made sense to him when put in context of experiences in his youth. So when his ability to differentiate his heres and nows from his thens and theres became impossible, he lived a permanent reality of his own imagination recreated around his earlier life.

Which is where the missing 'dreadful aspect' of Alzheimer's from Still Alice in the title of this post most painfully and horribly occurred on a daily basis to both Dad and his carers... 

He believed he was being sexually abused. Every single day. And nothing anyone could do or say could dissuade him from that belief.

What made it even worse, poorly-paid, kind and naturally gentle people, who only wanted to help him, were being punched and abused by him. Every single day. And probably not only by him.

Dad certainly had a fiery temper. He was extremely strict to me as a child and believed in not 'sparing the rod and spoiling the child'. He didn't drink, so that wasn't a reason (and clearly there's no excuse), he simply had very high ideals which he insisted his children adopt. Any impropriety or insubordination was deeply frowned upon. I suspect, having read his own memories, (you can read them here yourself ), his own upbringing was uncompromising and he may well have experienced sexual abuse himself - although I have no proof of this, and he never talked about such things. But his early years were spent in boarding schools and in the 'care' of school staff during school holidays.

Anyway, whether abused or not as a child, his latterly befuddled brain clearly believed that the daily ritual of his 'privates' being meticulously cleaned while he was being restrained, was sexual interference. No matter what the highly trained and long suffering male or female nursing staff (their gender didn't seem to make any difference to him) said to reassure him that they only wanted to change his diapers, he always fought back. And usually with as extreme violence as his amazingly fit 90 year-old body could muster. Indeed on one occasion, I arrived for a visit at the same time as he was being dressed. Two female nurses were valiantly trying to clean his rear while I offered to hold his hands while uttering (what I thought) were comforting words. He broke free from my grasp and slugged me in the gut. Full force. I'm ashamed to say I shouted at him to stop, fearing for the safety of the nurses as well as hoping this might reach out to the child within him to stand still and let the staff finish. But he was enraged and only extra force from his hugely distressed son prevented him on that occasion from turning on the terrified nurses. According to the staff, this happened every single day, for years, and it usually took three people to clean and change him.

There is a drug they sometimes use on difficult Alzheimer's patients called Risperidone. It basically suppresses violent behaviour. But it can also send the poor soul into what looks like a catatonic state if over-administered - which was hugely distressing for me to witness as he slumped semi-conscious in a chair, unable to speak, walk or eat. They don't recommend deploying it for longer than 6 weeks, so at best it only provides temporary relief, but that's sometimes enough while the disease continues to wreak havoc on the brain to a point when there's only a shell of a human waiting to die and most of their determination to fight will have passed. 

It wasn't a good option for Dad who lasted nearly another two years experiencing his daily delusion of being sexual abused. Nor was it a good long-term option for the staff being assaulted by a patient they were unable to persuade they were trying to help. Not only frustrating, but also dangerous. It also must have tested their respect for him to the limit - but to their extraordinary credit, they only ever saw the disease as their common enemy.

How hard for him to endure for so long. How hard for them. 

Bastard bastard Alzheimer's.


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