His favourite hat in the hall. His empty side of the bed. The grief (and guilt) of putting your husband in a care home
On May 17 my husband left our apartment around 12.30pm to have lunch with one of his daughters. What I knew, but he did not, was that he would never come home again. Going out to lunch was all part of a secret and detailed plan to move him, without distress, into a nursing home.
It’s five years since Howard was diagnosed with alzheimer’s and at least ten since his symptoms first appeared in his early 60s.
at the beginning he was still able to work, drive and generally care for himself. But gradually dementia invaded every aspect of his life, robbing him of his independence and his memories.
By the summer of 2016, looking after him had become a full-time occupation for me. I was only able to continue doing it because my day job, as a writer, can be done at the kitchen table — at night, if necessary.
as Howard’s condition progressed, his moods had become volatile. There were moments every day when he didn’t know who I was, and cracks were appearing in my own health: flu, shingles, falling asleep in the middle of the day. The body can be very eloquent.
That was when I was forced to admit that the unthinkable had become a necessity. The time was approaching when Howard would have to live in a nursing home.
With his daughters, Caroline and Kate, I chose a place six miles away (just two stops on our local train) that seemed to answer his needs and put Howard’s name on the waiting list.
It was the sensible thing to do — everybody said so — and waiting lists are long. I kidded myself that it might never actually happen. He might have a fatal stroke, or his alzheimer’s might be miraculously cured. Pigs might fly.
and then it did happen. almost a year after we first began to think of nursing homes, a bed became available.
NURSING home vacancies are in great demand. When you’re offered one, there’s no time to agonise or dither. If you don’t take it, someone else will.
I said yes and felt as though I’d been thrown onto a fast-moving downwards escalator. The preparations, the ironing on of name tapes, the paperwork, the packing, all had to be done without Howard noticing. He had never accepted his diagnosis and would never have gone voluntarily into residential care.
The days sped by, until the final 24 hours which slowed to an agonising crawl: our last walk by the harbour, our last dinner, our last night of sharing a bed.
as the clock ticked towards Howard’s lunch date I managed to keep it together. I gave him a cheerful send-off. ‘see you later,’ I lied, and watched the car drive away.
While Caroline spirited him away for a smoked salmon sandwich and no doubt a conversation of faux breeziness, his other daughter, Kate, and I dashed to the nursing home to add some personal touches to his room: family photos, a few books, a familiar bed cover.
My greatest dread was that Howard would arrive before we’d finished. I had already decided that I couldn’t be present for that delicate moment when he arrived at his new home. Cowardly, perhaps, but I recognised my limits.
as it transpired, his arrival was without incident. He was welllunched and in a jovial mood, cracking jokes with the nursing home staff. and by then I was already back at home, with a ready-meal for one and a large box of Kleenex. For the next week I barely left the house because I couldn’t stop crying. I cried when people were nice to me; I cried when they weren’t. I also had an elephant sitting on my heart. Its name was Guilt.
no matter that Howard had moved into his new home without a hitch and without protest. no matter that I had reached the end of what I could do for him at home. all I could think was that I should have persevered, soldiered on a little longer. I’d married him till death (not dementia) do us part.
Howard has now been gone more than two months. It hasn’t been plain sailing and has taken another move to find the right place for him, but my perspective has shifted — and so has the elephant on my chest.
I can now see quite clearly that his needs have outstripped what any one person can supply.
He requires round-the-clock care provided by people who work a shift and then go home to rest. He now has that and I’m free to contemplate my new status. Which is what, exactly?
I still feel very married to Howard in spite of the fact that he’s never coming home. I decided to try a new designation: dementia widow. Did it sound too tragic? semidetached wife? Did that sound too merry? I felt, and still feel, as though I’ve been dropped into unknown territory without a map. I have friends who have been widowed, though none of them by dementia, a very different matter because your loved one, though still there physically, is in many ways gone. nevertheless, their advice has been welcome. One advised against taking anything — pills, a glass or three — to numb the pain. ‘Better to feel it,’ she said. ‘Grief is a tunnel. If you hunker down with the whisky bottle it’ll take you a lot longer to get to the end.’
ANOTHER said: ‘Be kind to yourself,’ which seemed to contradict the first piece of advice. But what she meant was that I was entitled to all my feelings, even the ones that might seem selfish, like relief that my caring role is now over.
I began to pick myself up. Instead of gazing forlornly at Howard’s empty chair, I tried sitting in it. another new perspective. and how come he’d always nabbed the sea view?
I colonised his side of the wardrobe, but not entirely. a couple of his jackets still hang there because I miss his smell.
I still sleep on ‘my’ side of the bed. Howard’s side is still made up. sometimes the sight of his unused pillow makes me sad; sometimes I feel thankful that my nights are no longer broken by his wanderings and surreal conversations.
Invitations started to trickle in and I had mixed feelings about them. Dementia had curtailed our social life for the past few years and I’ve become accustomed to solitude.
The first evening I ventured out alone I felt off-balance. I kept checking for my keys, my phone, my bus pass. something was wrong, something was missing. Well, yes. Howard was missing.
For the first time in years, I’m now free to come and go as I please and I’ve begun visiting friends and family. I enjoy this new freedom, and yet sometimes I catch myself just going through the motions.
I thought there were a lot of things I desperately wanted to do. But now I’m able to, I’m not so sure. The reality of the
situation has taken the edge off my appetite. Perhaps it’s too soon. Some of the things I thought would upset me have turned out not to. coming home to an empty apartment? no problem. We downsized last year, tailoring ourselves to a shrinking income and to Howard’s need for a simple, one-level layout. Our place was a snug fit for two but it’s perfect for one.
And the sight of other silver-haired couples out for a stroll or setting off on holiday? They cause only the tiniest pang.
Howard and I had ten years of good health together and we never put off till tomorrow what we could do today. We worked hard, but we played hard, too. I still have those memories even if Howard doesn’t.
I find it’s silly little reminders that undo me. His battered old fedora still sits on the hat stand. You don’t really need a hat when you live in a nursing home.
His rainbow collection of bow ties is still in a bedroom drawer, abandoned when sweatshirts and trackie bottoms became a more practical dress code. I keep meaning to offer them to one of his equally dapper friends but I’m not quite ready to let them go.
The worst thing at this point is that I can’t remember the man he used to be.
Did he really paint the lovely watercolour that hangs over the fireplace? Was he the guy who’d play a ruthless game of tennis with his friend, Frank, and then call me to meet them for a cold beer? The guy who could recite Hamlet’s soliloquy in a Bronx accent?
Sometimes an inexplicable wave of grief crashes into me and catches me off-guard. I can be in the supermarket or doing the laundry and it knocks me sideways.
All this will be familiar to anyone who’s been bereaved. They say it passes. But dementia widows and widowers are dealing with a strange, untidy kind of grief. There hasn’t been a funeral, nor a will to sort out, and instead of a grave to visit, there’s a living shadow.
I confess I don’t enjoy visiting Howard. Perhaps this, too, will pass, but right now it’s an ordeal.
When I go to the nursing home I see a thinner, older man shuffling towards me and wonder is it he who’s changed, or my way of looking at him?
Two weeks ago our visiting time conversation went like this.
Howard: ‘How did you know I was here? I’m very happy to see you.’ Me: ‘I’m happy to see you too.’ Howard: ‘How’s carol?’ carol is Howard’s former wife. Me: ‘I believe she’s very well.’ Howard: ‘Good. And how’s Laurie?’ Me: ‘She’s well, too.’ Howard: ‘Good. How did you know I was here?’
We TRAVELLED that circuit several times. It was fine. We even had a laugh or two. He confided to me that all the other residents were crazy. ‘Absolutely barking,’ he said — what he used to refer to, in his London years, as a few stops short of Dagenham.
The other day when I visited it was a very different story.
Howard didn’t recognise me and had no interest in talking to me. My plan to trim his nails and take him for a haircut was scuppered. He wouldn’t even drink a cup of coffee with me. I was just an irritating stranger. He walked away from me. A nursing home car park isn’t just a place to park the car. It’s where you go to cry.
But here’s the thing. Forgetting me is possibly the key to his settling into his new life. I would hate him to be pining for home. To be watching from the nursing home window, longing for my arrival.
And now it appears that he’s crossed a line. While I wasn’t looking, he detached himself from me.
He still recognises his daughters but he’s beginning, as they say from the flight deck, his final descent, though by dementia standards he’s still young at 71. His heart is strong, his blood pressure enviable. He could well outlive me.
I don’t know, I can’t imagine where he is in his mind. He seems to inhabit a garbled version of his past.
Does he feel loved? Does he care? Dementia blunts the emotions. This is arguably another blessing in disguise. He may no longer experience joy but neither does he feel sad. He’s cared for and he’s OK. now it’s my job to be OK, too. My work is done.