In Hubert’s words…
It was some years before the true cause of Phoebe’s incipient dementia was diagnosed, by which time it was too late to rectify. At first, only family and close friends noticed any problems, and she was sufficiently compos mentis to operate the vacuum cleaner or chop up vegetables, for example, while I’d prepare our meals – not that I’m much of a cook! However, after a minor stroke in 2006 her condition deteriorated.
Staying at home was the only option
Our sons and I looked at various care homes, but we weren’t impressed; and she loved this house – it had been our family home for many years. She used to glow with pleasure when she returned after a spell in hospital. So we wanted to keep her here if possible – not least because she retained her happy personality and was almost never obstructive or complaining. Even when she no longer knew who I or her own children were, her friendly smile would cheer up the bus driver or the supermarket staff.
I found care workers from agencies very unsatisfactory. They’d only come in for a week or a fortnight, and then I’d have to ‘run in’ a new one. I came across a charity that rescues women who’ve been more or less enslaved by unscrupulous people. It put me in touch with a young woman from South India, and she came as a ‘home help’. She settled down wonderfully; and when she left after three years she found me a replacement who was possibly even better.
Having a break from caring
Our three children were fantastic, even though they all had demanding full-time jobs. They would take it in turns to take her on holiday or have her to stay. They often took her to her old home in County Mayo. It revived her childhood memories and she really enjoyed that.
That was the main break I got each year. I’d use the time to attend meetings or reunions and visit friends. Moreover, I had other ways of escape. Phoebe went to a day centre two or three times a week, and I took those opportunities to do things locally, such as studying in the local Department of Continuing Education. I kept very active in my neighbourhood. My advice to other people in a similar situation is never to allow yourself to wallow in self-pity. Get yourself involved in things which you can do, and keep your life full enough to not have time to get lonely and depressed.
Phoebe was a wonderful person. She used to smile at everybody, and her personality remained extraordinarily intact. She was still good company even in the last couple of years when she didn’t know who I was. She died three years ago on her 80th birthday, four days before our golden wedding anniversary. I miss her all the time.”
Phoebe went to a day centre two or three times a week, and I took those opportunities to do things locally.
If you need a complete break from caring for a short time, the person you care for may be able to stay in a care home ...
Are there other people who would be willing and able to help you look after the person needing care?
A dementia diagnosis shouldn’t stop anyone from continuing to live an independent life for as long as possible.