It is estimated that 750,000 people in this country suffer from dementia, principally Alzheimer's, but also its less well known but equally hideous variants. It's an ailment we prefer to shove into the background, the elephant in the living room.
My mother has Pick's Syndrome. Medical students memorize it for their exams as "Pick's disease picks off the frontal or temporal lobes but leaves the rest alone". The person I love most in the world is living a hideous inverted childhood, retreating into a mute presence, all her innate vitality vanishing into a black hopeless vacuum. Thankfully, as she is over 70 the progression is slow. Unfortunately it is also inexorable.
Empathy: a simple word for the most complex and rarely achievable human quality. My mother had it in spades and it was the solace I reached for at many times. She kept my black dog at bay and was a light that I could reach for when at my most wretched. Today, if I was killed in a car crash she wouldn't notice.
I have become a part time carer. The care I provide is subsidized by the State with the princely sum of £58 pounds per week. I have money, so that level of support isn't a problem, but as a level of payment for people of more limited means it is an utter disgrace. The cost of a care home is in excess of £500 per week, so our Government is effectively relying on familial love to prevent a burden on the State.
I do apologize if this blog sometimes seems cynical and flippant. The only thing I can offer in my defence is the netherworld that is a constant backdrop to my life. My father is elderly and the strain is killing him.
The only good aspect of the whole business is that I have finally had to become responsible, with inevitable lapses. . I can't say I like it much, but it is teaching me a few lessons that I should have learned years ago.
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12 comments:
We're all cynical and flippant on occasion. I think of it as our wee moment of escape, sometimes.
I have a friend who is only 27, but is suffering from pre-senile dementia resulting from the 'gay plague'.
I imagine it's a little like what your mother might be experiencing and it's truly painful to watch.
£58 a week? Is that it? To be honest, I wasn't aware of that. That really is disgusting and a perfect example of the value our so-called representatives place on the often unthanked carers in society.
Thanks for that.
Aye, and then they steal their houses and sell them to pay for their care. Being toon cooncilers they haven't the brains to realize that a capital sum in a yearly bond yields 7%. Add that to their state or occupational pensions and it's paid for.
We are governed by morons.
Despite what you may have heard about good health care in Canada, long-term health facilities here are under-staffed, there are a shortage of beds, some are closing down, and others violate health and safety regulations.
Having eaten in their dining rooms while visiting elderly residents, I can also say that the food is shit. Unless you can fork out the big bucks for private care, that is.
Be cynical and flippant to your heart's content if you wish and know that others in your circle have gone through difficult experiences with our own parents.
I suspect that your provision of health care is similar to ours: State funded and magnificent in some respects but sorely deficient in others.
There's not much I can say Garf. You're obviously a good bloke!
I was also a part time carer for my mum - though she was deteriorating physically which was not so frightening. Although it was hard - I look back on it now as a privilege...perhaps the only unselfish thing I ever did.
But I certainly agree about the stinginess of the attendance allowance.
58 pounds a week won't get you much. That's criminal.
I occasionally helped with my grandfather and, as Kaz stated, I'm so happy that I got that time with him even though he couldn't remember who I was. Actually, he once stated "I'm trying to find my granddaughter with the mixed blood." I said "That's me Grandpa." And the way his eyes lit up was worth every moment. Ahhh bless him.
Keep up the good work Garfer. Your mom & dad both appreciate it.
Garfy, my heart goes out to you. Both of my in-laws were in private care until they passed, and even that was pretty much shit.
My father in law was sharp as a tack until the end. He told us he was tired of living, and was just going to stop. He was gone less than a week later.
My mother-in-law had brushes of dementia toward the end, and just sank into a stupor that turned into a coma, from which she never emerged.
I think watching any parent slip away by inches is enough to make even the most saintly among us cynical and flippant. The slow stripping away of their dignity and personality is heart-rending. My thoughts are with you.
It's awful. You must miss you mother so.
Thinking of you and your parents.
I'm sorry about your lovely mum and I hate the way those inept hypocrites otherwise known as our government take all they can from people like your parents at a time when they should be caring for them, not robbing them of everything they've worked for.
its the unfairness, isn't it. more than anything else. the whole long, undignified, interminable process of sickness heading towards the inevitable. and the added punchline of not knowing it you're doing the right thing.
you love your mom, you hate whats happening. I'm right there with you. XO, my darling.
I've watched three grandparents lost in various flavours of dementia (the other one died before I was born); now, whenever one of my parents forgets a name or a bunch of keys, I hold my breath.
The thing is, many people don't see it as a disease as such, more an unavoidable function of getting older. Let's hope Terry Pratchett's expose of the massive funding gap between Alzheimer's and cancer will shake a few people up.
(But please be flippant as well.)
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