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Caryl: “It was a promise I couldn’t keep”

Caryl opens up about the most difficult dilemma she's faced as a carer. When her husband, Tom, was diagnosed with Alzheimer’s and vascular dementia, Caryl promised herself that she would never consider a care home. As his condition progressed, it became a promise she couldn’t keep.

Tom and I met whilst working in Oxford – him as a physics teacher, me a pharmacist. Next year will be our 50th wedding anniversary. Our home was always full of music, singing and cricket. We went on
some wonderful holidays and raised five children.

caryl website

Once the children were much older, we moved to Nottingham for my work. Tom retired early and that was our life for about 10 to 15 years. It’s hard to pinpoint exactly when Tom became unwell but it slowly became clear that something was wrong. He would get lost whilst driving as his spatial awareness suffered. A nurse asked me if he had managed to find his car – I had no idea he had lost it. 

Tom was eventually diagnosed with Alzheimer’s and vascular dementia. He never discussed his diagnosis or what might happen – that was just his way. He was then diagnosed with Apraxia and sometimes needs help to stand. I was struggling to support him in such a physical way, but it was still a shock when a consultant said he should go into a temporary nursing home in Nottingham. I had never thought about care homes.

caryl web 2

I still had hope that Tom would recover enough to be able to live with me. I moved and made adaptations to a new flat in Cardiff, closer to our family, but he was never well enough. I had to put his welfare first and accept what I could and couldn’t manage. I now have a lot of pain in my arms from trying to lift him.

Nottingham Social Services said they would continue to partly fund Tom’s care in Cardiff, in a care home they approved. It was down to my daughter and I to find somewhere. We searched online, rang around and visited our four preferred homes – one of which was within walking distance. But Social Services would only deal with one of them so in the end there wasn’t much of a choice. Luckily, we were happy with it.

Driving Tom from Nottingham to Cardiff wasn’t easy. When we got there it was even worse and it took seven people to get him out of the car and settled into his new home.

It broke me two days later when I was told Tom couldn’t stay there as they couldn’t manage him. We were devastated as we’d spent so much time and energy finding a suitable place. I asked them to reconsider and give Tom a bit more time to adjust. They agreed but I realised that at any point we could be asked to find somewhere else.

Now he’s settled, I know Tom is happy. He still enjoys listening to music and watching cricket. He often asks me who I am, but I know something in him recognises me. The other day he asked me who I was and I told him I was his wife and he said, “Oh, I don’t need one of those!”

I still care for Tom, only now I do so from his nursing home. I realised that I can care for him better whilst he’s there. I try to visit him at least once I day. I support him even though he no longer knows who I am; I hold his hand, I organise medical appointments with the dentist or chiropodist and I feed him at meal times. They’re very good at the nursing home but it is tough sometimes knowing I’m not in total control. There are some things I would do differently.

I believe I’ve done the right thing by Tom but I can’t just ask him what he prefers. That’s the hardest thing, his often blank face. I do feel guilt sometimes, especially if there is a day I’m not able to visit. I’m concerned about going away for a week, even though I know I need a
break.

caryl web 3

I do have a bit more time for me now and I’ve got back into singing, which I enjoyed before. It feels strange to be able to go out to the shops without thinking. I still organise my days around caring for Tom, which hasn’t changed.

Tom and I are not living the life we imagined. During retirement I hoped we’d live together, share memories and have time to travel. I’ve also got to be much more careful about money, to pay part of Tom’s care and because I’m retired myself.

At times I do feel lonely. You never get used to going home to an empty flat, after having a big family. At night I still reach over even though Tom’s no longer there. At very sad moments I feel like a widow. My husband is there but he’s lost to me - he doesn’t laugh with me anymore.

What’s really kept me going is support from my family, especially my children and sisters. Organisations like Carers UK have also been so valuable – the online forum has allowed me to get in touch with other carers and share tips and support.

If I could start this journey again, I would have tried to find out more and much earlier. I would have considered that Tom might have other problems as he got older, just like anyone else, and not just dementia. Perhaps this would have made me better prepared for the decision I had to make about Tom’s care.

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