Alzheimer’s: waiting for my father to die again

Happy, aware, and a brilliant mind.
Happy, aware, and a brilliant mind.

‘Alzheimer’s disease (AD), also known as Alzheimer disease, or just Alzheimer’s, accounts for 60% to 70% of cases of dementia. It is a chronic neurodegenerative disease that usually starts slowly and gets worse over time. The most common early symptom is difficulty in remembering recent events (short-term memory loss). As the disease advances, symptoms can include: problems with language, disorientation (including easily getting lost), mood swings, loss of motivation, not managing self care, and behavioural issues. As a person’s condition declines, she or he often withdraws from family and society. Gradually, bodily functions are lost, ultimately leading to death. Although the speed of progression can vary, the average life expectancy following diagnosis is three to nine years.’ Source- Wikipedia.’

My father has always been a generously spirited man who will help those in need and never consider that this is anything other than normal behaviour. He is a much better person than I will ever be, but his simplistic view of the world has helped me to appreciate the important aspects of life that so many of us take for granted every day.

Seven years ago he started to present the symptoms of Alzheimer’s disease, which was not diagnosed fully until three years later, and over time his condition has deteriorated consistently. All of the expected symptoms have grown in occurrence and severity, but over the past few months we reached the point where he required full-time care away from his home. 

I could write many pages about the quality of help and care available from the NHS, but suffice to say that it seems wholly unable to cope with an ever growing population of sufferers. My mother and I have had to jump through multiple hoops to get anything done and the continual, and very open, reasoning of ‘we just don’t have enough people available’ is now raining in my ears. There is no doubt that many parts of the NHS are under-funded and that the service is being starved financially at this time, but I have some sympathy with a problem that is obviously starting to get out of hand. We are all living longer and thus some of us are losing our minds for much longer as well.

Anyway, I am writing this purely because I wanted to explain how I am feeling about my father’s current state. I don’t live near him, but this weekend we visited him in the care home and it was truly shocking to see how much he had deteriorated in the few weeks since I last saw him. The confusion was still there, but that was about it in the few moments that he spoke at all. He was vacant; no interaction, no understanding of what is happening around him and, well, nothing at all. Just a shell of a man who is barely existing.

As I watched his fellow patients in the home, the experience was repeated again and again. People just sat staring at nothing, eyes devoid of recognition and bodies hunched forward awkwardly waiting for nothing at all to happen. For a moment I wondered if the staff were drugging the patients, but my mother explained why this behaviour is perfectly normal in the world of the living dead.

My father died many months ago, at least in terms of his ability to recognise people and to interact on any meaningful level, and so we now wait for him to die again. By all accounts this will happen very soon and I can’t say I am saddened by this. 

As callous as it sounds, I can’t see my father in the man who just stares into space continually. I don’t mean that in a selfish emotional sense that is all about me, but in the sheer fact that he is simply not there. I watch him and the way he looks at his grandchildren and my wife, and there is nothing coming from his eyes. No warmth, no sense, nothing. It’s like when they say a person can offer a presence in a house even when they are asleep.

If you have ever visited a funeral home, you feel that there is no one there. Your relative may be in front of you with their eyes shut, but it ‘feels’ as if you are alone. That is how it feels when I sit in front of my father and watch him just stare through me as if I do not exist. And I suppose I don’t exist to him anymore.

I don’t feel that I missed precious time with my father or that we, as a family, have been unaware of what has been happening to him, but I am shocked by how horrifying this particular disease is. You watch your father die little by little over time and then you reach a stage where you are waiting for him to die in the biological sense. Even worse, dying doesn’t seem to be a bad thing at all for him at the moment. It is probably the best thing that could happen to him, and the thing I never wanted to happen.

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