In Susan’s words…
My mother is frail, everything is a big effort and she’s become quite forgetful. Until she was about 90 there really wasn’t a problem – and, in the past, most people were dead by then. Modern medicine does a lot for the body, but not as much for the mind. Her body also lets her down – she tires quickly due to heart failure.
If she’s on her own for a long time, she often forgets how to work the telly, or she’ll think the heating’s not working, or she’ll feel lonely, and she can get upset very quickly. So she needs someone around most of the time. Her memory is hit-and-miss, and if we’re going out, she’ll ask again and again what we’re doing and where we are going. The constant questions can get really wearing.
When my sister Linda moved in to care for her, she expected it to be for a couple of years because our mother was quite unwell. But that was some years ago and now our mother is reasonably well – at least physically. The only time my mother leaves my sister alone for long is if my sister is in the bath. When Linda went out to her part-time job, my mother cried and pleaded with her not to leave and eventually my sister took early retirement. But she needs a break at times, to either go out or do stuff in the house without constant interruption.
These days my mother can, at times, be quite rude and judgmental, which is a feature of her dementia. Any carers have to be quite thick-skinned and so do we. Previously she was widely known and respected as a person who was invariably tactful and friendly.
Giving my sister her own time
We have used various agencies to give my sister a break, but it seems that my mother will reject anybody who she views as a carer. We eventually got round that by arranging to ‘meet’ by chance a carer called Fay at the park – just starting up a conversation on a park bench, and then my mother fell into our little plot by asking, ‘Would you like to come and visit us?’ Now Fay comes every Monday, but my mother doesn’t know she’s being paid. So that worked out really well, and we use the same method with other possible carers. It doesn’t feel good to be deceiving her, though.
We make sure places we visit are suitable for people with dementia, and we have to watch out that they aren’t too noisy.
We take her to lots of places. We make sure they are suitable for people with dementia, and we have to watch out that they’re not too noisy. It can be a bit stressful: for example, she goes to a day centre on Tuesdays. She says she hates it and throws her stick on the way in, but when we talk to the staff they say she’s had a lovely time – it’s a bit like dropping your child off at the nursery, where they make a fuss when you leave but are actually quite happy. But we still feel guilty about it.
Varying the outings
I spend most of every Friday with her. I drive her to the park and take her dog for a walk for 20 minutes or so, but I always stick up a note with my name, mobile number and what time I’ll be back. That way, someone can phone me if they see her looking distressed. No one’s ever had to call me, but it prevents a possible problem.
Sometimes I take my mother to see my friends, who she also knows well. She can be delightful and it’s lovely to be able to do that, but all the time you’re checking whether she can follow the conversation and whether she’s happy. Otherwise, she will get upset and very irritable. So it’s very different from having a relaxing time with a friend.
I know I’m not alone. I’m in my late 60s and every third person I meet has a relative they are helping to look after. My sister does much more than me. But it’s very important to try to live your own life as well as be a carer; you do actually have other things you want to do. And spending many hours with someone with dementia can be extremely wearing, exasperating, boring and distressing, especially if it is a close relative who is no longer ‘themselves’ most of the time.”
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