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Expectations in dementia care

This week’s storyteller has chosen to be anonymous.

It’s hard to know what to demand from a care home or how to achieve it. A daughter rates her mother’s experience.

Alzheimer’s Society chief executive Jeremy Hughes told the BBC recently: “Society has such low expectations of care homes that people are settling for average. Throughout our lives we demand the best for ourselves and our children. Why do we expect less for our parents?”

He’s made me wonder about my expectations for my mother. Did I have any at all, or was I just relieved to find a warm and comfortable place for her where the carers appeared to be kind and thoughtful and the food was OK?

When my mum broke her hip and couldn’t understand the physio helping her learn to walk again, there was no choice but to find her a home. My dad and his house were not prepared for looking after a wheelchair user with dementia.

So given a distinct lack of choice of homes in something of an emergency, was I pleased or disappointed with the nursing home that dad selected?

I was delighted not to be greeted at the door by that heady mix of wee and disinfectant. Maybe that is setting my sights rather low, but there are many places in homes and hospitals where you can’t get away from it. I took this as a good sign.

I was pleasantly surprised to find that a mostly chair-bound population of elderly people in need of close nursing did not spend their days sitting around the edge of a day room. And I was pleased to find mum in a different spot whenever I visited. I also liked the fact that visiting hours were so long – it made me feel the home had nothing to hide and all to gain with our presence.

I was chuffed that animals were allowed. Someone had brought her elderly cat with her, which ate and slept under her chair. One week there were rabbits.

I certainly liked the fact that when the sun shone warmly enough, everyone who could was walked and wheeled out into the garden. If they agreed they’d be taken for walks, with a friendly farmer next door willingly accepting visitors.

I appreciated the efforts the entertainments officer made to make life a little less boring for the residents. She tried hard to persuade my mum to take up the piano again, but it was really too late for that.

Maybe these aren’t very high expectations, and I still had some sore disappointments. It was a shame that the entertainment officer only came in two mornings a week, and the rest of the time was spent watching television or sitting. It was a pity that eating and living all took place in one room, even if it was naturally divided into different sections. It was unsurprising that many of the kind carers and nurses were hard to understand, when English wasn’t their first language. I was very disappointed that the visiting hairdresser took no notice of the photo I’d supplied of how mum liked to look.

Perhaps the disappointment that sticks in my mind the most was a short conversation with a carer on my first visit. She walked over to mum and said “Maggie, your daughter is here”. I asked her why she was addressing my mum as Maggie when her name was Margaret. “Oh well, we already have a Margaret here so two would be confusing” she said, perfectly seriously.

Fast forward a few years and mum has been gone a while now. No one from the home came to her funeral.

I’ve just been to the grand opening of a luxury nursing home locally. It is fabulous. Out of three floors, the middle floor is devoted to dementia patients. There’s nobody in residence yet, but quality shines through the lakeside setting, the well-appointed bedrooms and living spaces, and the attitude of the management. Yet even here the invited experts were finding fault with the bold décor – the patterned wallpaper deemed too confusing for dementia patients apparently. As a daughter, all I would have found to complain about was the price. You’d need a Surrey-style house to sell to pay for your stay there.

What do we expect from a care home for parents living with dementia? What do you believe are the minimum requirements? Let us know with a comment below.

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