Monday 28 March 2011

Uncle re-visited

I have just returned from another visit to my uncle in his nursing home*.

These visit always leave me feeling sad and angry. Sad, because to see a once-vibrant, fiercely independent, highly intelligent human being reduced in ths way is an insult to us all; angry, because he shouldn't be alive.

About three years ago, he was found unconscious in his own chair in his own home. Up until then, he had managed well, with the help of his devoted houskeeper and her husband, but things were begining to fail. If only he hadn't been found. If only he had been able to die, like that, where he wanted to be, ignorant of the real indignities of old age.

But he was found, and taken to hospital, and then started a round of hospital treament and spells at home, his frail wits gradually departing, together with his physical strength, until he was admitted to the place which is now his "home".

It's a pleasant place, the staff are kind, and he is well cared-for. Some might say he is fortunate to be able to afford a place like this (although it was not of his choosing). But it is not (dreadful expression) "what he would have wanted". Incontinent, confused, not knowing where he is or (as today) who I am, he seems to live in an ongoing nightmare, from which he emerges from time to time to manifest a few brief moments of normality. I'm not saying he's unhappy all the time. He's not. But I can only imagine what goes on in his head; the un-joined-up thoughts, the discomfort, the bewilderment, the time travel (sometimes, he's in the here and now - almost; at other times, he's in a past I never knew). It is cruel; it is horrible; it is not the way anyone should end their life. My family (they include three doctors and a nurse, so they should be able to manage it) have strict instrustions as to what to do if this ever happens to me.

At one stage this afternoon, he told me I was 107 (he is much preoccupied with people's ages); at another, he thought I was my mother. As I hugged him good-bye, he looked at me with tears in his eyes and said: "I miss you so much. There's so much to make noises about."

Isn't there just.

*I know I've posted about this before, but it's on my mind today.


  1. Oh my gosh Francis. This is just what I'm experiencing with my wonderful Dad, who has been steadily deteriorating for teh past few years, and rapidly since November last year when he has a stroke which left him physically disabled as well as mentally. To see this gifted sportsman, this charismatic man, so reduced is heartbreaking. And worst of all is my Mom insists on caring for him herself, so we have to watch her deteriorating rapidly as well. Since December we've insisted on a nurse, but my Mom will only take him one day a week. The big question is WHY? Why does he cling to this existence when, if he was himself, he'd be horrified? I have a living will which states that should I ever be like this I will be sent to a place where it's legal to put me out of my misery. My husband is against it, but sister & her daughters has promised to either push me off the nearest cliff or take me to the Dignitas Clinic in Switzerland.

    Sending (((Hugs))) your way!
    Judy (South Africa)

  2. Thanks so much for that, Judy. I'm so sorry about your dad. It's horrible, isn't it.

    I'm not at all sure that euthanasia is the answer; more letting people die when they could be saved (say, by antibiotics). Both my parents were allowed to die after I had requested that antibiotics be withdrawn. This isn't euthanasia - after all, antibiotics are not natural. I would never withhold fluids or analgaesia. As a nurse, I have given doses of drugs which I knew would hasten the end, but that was a side-efect rather than the purpose of the drugs. I think the first responsibility to the patient is to relieve distress. My instructions to my family (if my life is joyless, painful and pointless) are relief of pain, fluids and NO REUSCITATION!

    I think they've got the message.

    (Hugs to you, too!)

  3. Thanks for posting about such a heartbreaking subject, Frances. I completely agree that sometimes it's much kinder if an elderly person comes to the end of their life naturally, without medical intervention.

    When my mother died a few days after her 80th birthday, I was in deep grief (I'd lost my father at 12 so we were close). But I was also glad that she'd died peacefully from pneumonia when she did, as she was in the early stages of dementia and soon wouldn't have known us at all. That would have been much more unbearable.

  4. This whole business of 'striving officiously to keep alive' is awful, isn't it? A friend of my mother's is in a home with dementia, doesn't know her family and is confused and bewildered a lot of the time, and yet it is still being proposed that she has surgery to correct a heart problem! What are we becoming?

  5. Hi, Rosemayr. I'm glad at least that your mother was able to have her peaceful death. It's the very least anyone can ask for.

    Alis - cases like that of your friend's mother make me so angry. To inflict a painful operation on a patient who (presumably) won't even understand what's happeing is both wicked and stupid. And (on a practical level) a dreadful waste of scarce resources. As far as officiously striving is concerned, it is theoretically possible to keep pretty well anyone alive indefinitely, but at what cost.

  6. @Frances - Every time you blog about this, it really strikes me hard. I think about you and your uncle's experiences sometimes when I get called with the ambulance out to the nursing home.

    @Alis - I ached for my wife's grandmother. She was in a home with dementia for about three years. For the last two, she didn't know anyone. She couldn't speak better than a two year-old. She didn't eat. She couldn't breathe without assistance. She was in so much constant pain that she had to receive a suppository twice a day.

  7. Welcome back, Nevets! Where have you been?

    I know I do bang on rather about my uncle (my poor mum suffered even more), but it's all so unncessary. About two years ago he was dying - really dying - of pneumonia, and along they came with their bloody antibiotics and he survived. The paradox is that if he were not well off, and able to pay for care in a superior home, he woudl almost certainly no longer be alive.

  8. Mostly just searching for a free moment here or there...

  9. It must be heartbreaking for you to see him like that.

  10. sending you a big hug because there's nothing that I can say that will make this any better.

  11. Thanks, Patsy and Colette. Colette - I'll pass the hugs on to him when I next see him. Hugs are one language he always understands.

  12. Dementia is a terrible thing Francis and I can understand your sorrow.

    My mum had a dread of dementia but it courted her. Luckily she had no insight so was free of emotional distress from the very beginning.

    My mother (as the lovely person she was) died many years before she physically left this earth.

    I have written two poems re dementia on the blog. Perhaps you might like to read them?

    Love to you and your uncle Frances.

    Anna :o]

  13. No , we shouldn't endlessly strive to keep someone so frail alive . It's cruel . But exactly where to draw the line can be hard to decide in the heat of the moment . Clear instructions , such as yours , are a help.
    Meanwhile , I'm glad he's got you to make noises for him and his peers !