- Laurie Graham struggles to care for beloved husband Howard at home
- He was diagnosed with dementia last year and needs constant monitoring
- The writer said she fears putting him in a home but knows having to make the decision is not far away
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There's a place close to where we live that my husband, Howard, and I sometimes drive past on the bus.
Last year, when it was being refurbished, there was a board outside saying it would shortly be reopening as a private nursing home dedicated to dementia cases.
Every time he saw it, Howard would joke: ‘That’s where I’ll end up.’ And every time I would look away and change the subject.
Laurie Graham with husband Howard at home where she is in a state of 'almost perpetual watchfulness'
Laurie said dementia sufferers like Howard need gentleness, routine and patience
Since last October, when I wrote in the Mail about my 66-year-old husband’s early-onset dementia, he has continued to deteriorate.
A year ago he could, if he really concentrated, get himself into town to meet me for a pub lunch. Now, though he would dearly love to, it’s simply beyond him.
While most of the changes have been small and gradual, others are a heart-stopping reminder of his mental decline.
A few weeks ago he had a bad chest infection and I left him for 40 minutes, to go to our GP to pick up a prescription for antibiotics and then to the pharmacy.
When I came home, the front door was wide open and Howard was missing. His wallet, his mobile phone, his keys, his overcoat, were all still in the house, but he wasn’t.
I decided to give it an hour before I raised the alarm. Just as I was about to call the police, the doorbell rang. And there he was.
He’d been searching for me, despite my having left a large notice on the kitchen table to remind him where I’d gone.
He’d found his way home, which was good. He’d put at least a year on my age, which was not so good. And now my heart is in my mouth if I need to leave him even for half an hour.
I know, because others who have been there before me have told me, the day will dawn when all of this will become too much for me: that the time will come when I have to find residential care for Howard.
Even putting that suggestion in black and white incurs a visceral reaction against it. The very thought is the stuff of nightmares. A recent poll conducted on behalf of the Alzheimer’s Society showed that 70 per cent of people canvassed are terrified of ending their days in a care home. Far more than dreading ending up in a care home myself, I dread having to put my husband in one.
Given that around 80 per cent of care home residents suffer from dementia, you can see why it’s particularly concerning for me. It seems barely a week goes by without me reading yet another example of the shameful and cruel ways the elderly and vulnerable in our society are too often treated.
I know the day will dawn when all of this will become too much for me: that the time will come when I have to find residential care for Howard
Last year alone, the Mail reported at least half-a-dozen care home horror stories. The Care Quality Commission, which inspects residential institutions, found failings in one in six places it visited.
Although my own relatives have tended to succumb to swift final illnesses that could be nursed at home â€" my grandparents and my mother all died peacefully in their own beds, I have a friend whose mother, Mabel, didn’t fare so well.
Mabel was in the final stages of Alzheimer’s when she was moved into a West Midlands care home.
She had lost the power of speech so when her dentures were ‘mislaid’ she couldn’t tell anyone. Nor could she indicate to them that she was unable to eat properly. By the time her family twigged what the problem was, Mabel’s weight had plummeted.
The attitude of the staff seemed to be: ‘Why the fuss? She’s on her way out anyway.’
Well, of course one way or another we’re all on our way out. But wouldn’t we all wish to be comfortable before we go and not treated like a carcass that merits no attention?
Mabel’s dentures never did turn up. Maybe they got jammed into some other poor soul’s mouth.
The pitiful thing is that all a dementia sufferer really needs is gentleness, patience, a regular routine and familiar surroundings.
Laurie Graham said she feels guilt when she finds herself being impatient with Howard
It isn’t much to ask and only what you’d expect to find in any loving family.
In which case why don’t families just keep them at home? They don’t because in the end those needs become more than most single carers can provide â€" something I can sympathise with.
My husband was diagnosed last year, but the undeniable deterioration began seven or eight years ago. Now the man I married â€" his personality â€" has almost disappeared. He can no longer work. He can no longer cook or build bookshelves, two things at which he once excelled.
Above all, he cannot remember. Anything. Left to his own devices he might eat three breakfasts. Last night, we had dinner with his children and his grandchildren. Today, he remembers nothing of it. Watching over Howard takes me back to when my children were tiny. I am tied to a duty of almost perpetual watchfulness, but without the adorable rewards of being a pa rent.
When situations arise, and they do, almost every day, I run through the full menu of feelings. Fury, grief, defeat, dread, you name it. And then, of course, guilt. Buckets of guilt that I’m not more patient, brave and understanding.
Caring burns a lot of fuel, psychological and physical too, if any lifting is involved. The energy tank is soon emptied and the toll caring takes is well documented. It’s called carer burn-out.
And even I, a strong, healthy woman in my mid-60s, have begun to suffer some of its consequences.
My hair is falling out, my sleep is disturbed, and my immune system is so out of whack I’ve fallen prey to more infections in the past year than I previously had in my entire life.
How much harder must it be on carers who are in their 70s and 80s? If part one of my nightmare is that some day I’ll be forced to leave my husband to the mercies of a bunch of spiteful jobsworth carers, then part two isn’t much better.
What if Howard outlives me? He’s relatively young. His daughters, in their 30s, with fulltime jobs and young families, love their dad but I can’t exact any promises from them. Like me, they can only do their best.
Watching over Howard takes me back to when my children were tiny. I am tied to a duty of almost perpetua l watchfulness, but without the adorable rewards of being a parent
ÂAt the moment we deal with things on a need-to basis: currently we are discussing his refusal to accept occupational therapy or to attend a day centre. We have not discussed The Future. What is there to say? We’re adrift on a small raft, making it up as we go.
Carers don’t always like to say what they’re thinking because keeping buttoned-up can be an effective coping mechanism. Until it isn’t any more.
Perhaps it’s time to clear the air a little. Dementia is quite unlike cancer or heart disease or any of those other conditions where you bargain with God for a cure or even just a bit more time.
A cure for dementia isn’t coming any day soon, and once a certain tipping point is reached more time for your loved one is the last thing you want. More time for what? To witness the further, relentless destruction of a mind?
No, what you want but don’t like to say is a quick and merciful end. But then, whose end are we talking about? Any carer who’s honest has had days when they’ve thought what a relief it would be to fall asleep and not wake up. Oh, but wait. Then what? Then the loved one would certainly end up in a care home.
Laurie is one tens of thousands of carers struggling to look after their loved-ones at home
And putting my beloved husband in a care home seems like the ultimate betrayal â€" and an extortionately expensive one, at that.
A place in a basic local authority care home costs around £30,000 a year. A really nice private nursing home where patients can have a room with some of their own furniture and personal bits and pieces costs closer to £90,000 a year, an unattainable amount for most of us, or else a very quick way to run through someone’s pot of savings.
The State spends £23?billion a year on care for the elderly, but as the scandals and stories of abuse proliferate, wouldn’t properly supported home care be a much better investment? Affordable respite, affordable night care. A dementia patient is far less likely to be abused and humiliated in the bosom of their own family.
Meanwhile, we carers struggle on as best we can â€" not that we escape the critical gaze of others.
Someone remarked to me recently that she thought I had allowed my husband to become too dependent on me. She had no suggestions as to how I might have managed things better, but I gave some thought to what she said. After all, I am with Howard all day, every day.
But here are the things he can no longer do for himself: scheduling medication, preparation of meals, shopping, keeping appointments, making a pot of coffee, ru nning a bath â€" and, crucially, remembering that the bath is filling with water and the coffee pot is boiling dry.
When someone can no longer do those things for themselves what is a carer to do? Give them a pep talk? Dependence on one’s spouse is an uncomfortable thing for all concerned, but there is only one alternative â€" that place we drive past on the bus.
Maybe it’s very nice. Maybe it’s not astronomically unaffordable. Or maybe, like so many care homes, it’s the stuff of nightmares.
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