Saturday, 9 January 2016

'He's Not My Dad Anymore.'

That's what someone told me last week.  Their misery was all too evident.  I've heard variants on the theme often in my work with people with dementia.  No doubt they'll ring in my ears again. Always a little bit of my own heart breaks too.

At what stage in the disease process does a person's lifelong identity disappear?   There is no right answer here.  Sometimes I see a struggle to hold onto selfhood.  For others those little lights that Passenger sings about seem to dim fast especially in environments which are just plain wrong in terms of the stimulation that is provided.   Is the person themselves aware?  I think that they often are.  Maybe it's the reason for their indescribable sadness, aggression or agitation.

It's a rare case indeed when a person has disappeared altogether.  With patient work, glimmers of former individuality can be drawn out of people.  But it's often time that loved ones don't have.  That's an observation not a judgement.  Waiting for greatly extended periods of time for a person with extraordinarily slow process to express a preference about what they would like to drink often isn't feasible.  Life goes on for us lucky ones. But a few carers persevere.  They are my inspiration.  Some of the most remarkable people I've ever met.  'She's still my Mum.' asserts  the daughter of a woman told me whose  heightened distress takes hours to calm.  A contrast to those words that make up today's title.   There is still hope.

12 comments:

  1. My dad died four years ago on Christmas Day from a massive heart attack he was 80 however I consider myself fortunate and am grateful that right up to the end we could still have a conversation with him and he did not succumb to any kind of dementia. My mum is 86 this year she too is all there mentally sharp as a tac and keeps herself fit by regular walking stretching and bouts on her exercise bike. She reads crochets and knits completes crosswords and sudoku and stalks her grandkids on Facebook ( I don't have Facebook lol) She is an inspiration and I am very lucky.

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    1. Love the idea of a granny doing some virtual stalking! Thanks for sharing! x

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  2. Yes, this is one illness that most of us dread. My Grandma had it and was found a couple of times wandering in her nightdress, so sad. Let's hope that a remedy will soon be found.
    Briony
    x

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    1. The problem is with a remedy is that there are many types of dementia. No one solution but there is a lot of research going on. x

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  3. I am choked up at your post, today. I am totally in agreement with the daughter who said, "She's still my mum." My mum is severely affected by dementia, but she has some pleasure in life and moments of clarity. Just this week, on a day when she wasn't all that forthcoming and didn't seem able to say anything, as I was telling her what I'd been up to, she said, "You've got a lovely little face." (She's biased!) Oh the joy!!! I can't expect my mum to do and say what she once could, anymore than I can be expected to muck out horses, ride four hours a day and move 200 haybales, as I did years ago, seeing as I have had a debilitating illness for the last 15 years. The day is coming soon when she won't know who I am, but if she greets me with the same smile I and her carers mostly get, then I will be glad to be one of the nameless people who brighten her day. Loyalty is precious and Mum never deserted me; I will not desert her.

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    1. I'm am very moved by this. Thank you so much for sharing. x

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  4. It is such a hard disease- my MIL had it yet strangely it came with moments of humour- she became very cheeky and pure joy. Arilx

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    1. That happens for some people as well. I remember one man who'd been a cold, distant husband became strangely cuddly! x

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  5. Ahh my beloved Nanna had dementia but always knew who I was, right to the end. She was 93 and it was actually a fall - broken hip that was her downfall. One of the saddest things for me was when she'd say things like
    "I think your Dad has left me because I've not seen him for days and he's not come home today ."to my Mum when actually he had died over twenty years ago.
    It's a cruel cruel disease.

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    1. That mixing up of time can be a bitch and cause all sorts of upset.x

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  6. You regularly see what most people don't - unless they have a family member or friend affected. I'm lucky in that neither of my parents had it before they died (my mother at 48; my dad at 86) I've seen it so much though and my sister in law developed it in her early 50's.

    Many years ago during a hospital stay, there were four of us ladies of varying ages in a bay. We had a lovely first day with illuminating conversations about our families and lives. We all felt saddened by a lady with dementia who was further down the ward.

    That night there was a bit more noise and a coming and going of people, some escorting one of our number. She had been found outside on the cold, busy, Greenwich street dressed only in her nightie.

    She told us the next day she didn't remember going out there and felt confused when found. Other than that she seemed 'normal'. The nurses told us she was in the early stages of dementia but what it made us all realise, was how difficult it could be for it to be recognised in the early days.

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    1. Thanks for this Blossom. It's important for people to seek out memory assessment as soon as they notice problems that weren't there before. Sometimes it can be down to other things but if it is dementia and spotted early the likelihood is that a person can be supported to live independently for longer. x

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