On Friday morning my father in law died. I use the title, although my partner and I are not formally married, not because he was like a father to me – he had lived with a diagnosis of Alzheimer’s for the past 2 years, but because he had been such a big part of my life from that point onwards.
Dad had, since his wife died, greatly valued his independence. He was a self-contained man who enjoyed solitude. He fought to stay in his home after his diagnosis. His children, who all lived far from him, respected this, set up a rota between them and got care packages in place straight away. As I said, Dad liked solitude, he was an introvert and carers coming into his house shattered his peace. He began to find novel ways of keeping them out or was direct in expressing his wishes through the window.
His weight began dropping and eventually he was admitted to hospital on a couple of occasions. His kidneys were failing and there were moments during the latter visit when hospital staff thought he wouldn’t make it. He did pull through. Dad seemed to have a strong constitution, perhaps from years of army training. The system now intervened and Dad was told he could not return to his home. This was met with confusion and rage. His son felt great regret at having to trick his father into travelling to a care home close to where we live.
I don’t want to go into the details of his time at the care home. That is perhaps for another time. I feel a huge sense of irony that my father in law may have died in care for the same reason he was removed from his own home.
For the past week, many residents in the care home were suffering from a gastro-intestinal bug. We were asked not to visit so they could try and contain the virus. What we weren’t aware of was just how ill Dad had become. He never spoke of physical pain and perhaps at times it was because he was unable to express this, but he did speak – in fact he asked to go to hospital. My response would have been to act on this straight away – Dad seemed to get used to and endure chronic pain. He had been living with a urinary tract infection for months. His pain seemed evident from his expression and movement, although was never verbally expressed and our expressions of concern were brushed aside. His son was, however, ringing the hospital every few days to get him admitted for intravenous antibiotics and further investigations as to the cause. Another irony – he had got a bed for next week.
A doctor was called in and later a paramedic saw him. We were told that we knew how difficult Dad was and that he didn’t want to be examined. Difficult, how many times had we been told this. He was a vulnerable man still fighting for his independence – you found him difficult – it says so much more about you.
No further medical action was taken. We got a phone call on Friday morning to say he had passed away and on the death certificate, Alzheimer’s was the cause.
We had plans for him. We had been to view a house where we could live together and where his needs might be better met. We would never have considered this if we thought the Alzheimer’s was so progressed that he needed more specialist help. Having worked with people living with dementia in another setting, I didn’t believe this to be the case.
I don’t want to fight all the injustices I feel Dad has endured. I want peace for him. So why am I writing this? I lay awake for most of last night unable to let it go. I want things to be so much better for people living with dementia and my silence won’t help that.
I want to ask the GP why he felt that Alzheimer’s was the cause of death. We had previously been rebuffed by him when we questioned his prescribing antipsychotics to Dad – the diagnosis given of being a difficult man.
He was a man who challenged. He was a man who reacted and responded to how he was being treated. Everyone caring for him should have been up to the challenge to connect and nourish him in every way and those directly involved in his care might want to reflect on whether they may have been able to prevent Dad’s death or at least lessen his suffering.