Date: 04 June 2016
By the time my mother died last year, my brother and I had built up a lot of know-how about caring for someone with dementia.
While our father was still alive, most of the day-to-day caring work fell to him, as both my brother and I lived some distance away. Mum had had long term mental health issues and her dementia emerged quite slowly, building up into a major problem for Dad. Dad was very stoical, wanting to deal with the situation on his own and this made him resist help that might have been very valuable.
Dad was already experienced in dealing with Mum’s mental health problems but the dementia increased the demands upon him. Although people talk more freely about mental health issues and dementia today than a generation ago, he still felt a taboo about Mum’s mental health and this strengthened his sense of pride, duty and the need to keep up appearances.
Looking back on it all now, I can see that Dad didn’t have a very clear understanding of Mum’s condition, how it might progress and what it might require of him. Like so many carers, he coped by not looking too far into the future and he just kept on coping, even as things deteriorated. I am sure that Dad felt fearful, anxious and angry about being Mum’s carer but it didn’t seem as though the local health system had a good system for looking after him.
Eventually Dad’s own physical health problems became so serious that he could no longer look after Mum at home and we agreed on a residential care home for her, where she outlived Dad by several years. The dementia was running its course but some of Mum’s deterioration was made worse by factors which I now think could have been tackled better, both at home and in the care setting.
Mum had mild urinary incontinence, so she had a tendency not to drink enough and the resulting dehydration led to repeated urinary tract infections and some nasty bouts of toxicity, causing acute confusional state. If careful attention had been paid to keeping Mum’s fluid intake up, this might have been avoided.
Mum’s dentures didn’t fit well and this made it very difficult for her to eat. With many pleasurable aspects of life all but disappeared, it would have been great to have maintained her enjoyment of food but in practice this became very difficult, to the extent that she had to be coaxed to eat enough. Early attention to her dental care would have paid dividends.
For other people, early checks on hearing and eyesight, perhaps when the person can still respond to standard tests, could be valuable.
What would I advise someone just starting to face the challenge of looking after someone with dementia? First, have a detailed discussion with the clinicians - GP, elderly care consultant, psychogeriatrician – and make sure you understand the diagnosis and how the disease is likely to progress.
Second, don’t feel you have to keep up appearances all the time. Take whatever help you can obtain and be prepared to talk to professionals and supporters about how you feel. Caring for someone with dementia is huge commitment and it’s OK to feel angry or sad about what is happening. Find a way to look after yourself and if you are offered referral to services such as counselling or a support group, don’t dismiss the chance to get some help.
Third, you are going to have become skilled at finding out how local services work and then negotiating with them to get the best that you can for your loved one. If your cared-for person is in residential care, you will still be their advocate and may still have to negotiate the provision of services, which vary across the country.
Lastly, don’t feel that your loved one going into residential care means you have failed. If you have reached the point at which it is no longer feasible for you to care at home, a good residential setting will be the kindest and safest choice and may enable you to look after yourself better.
Peter talks about his mother’s experience of dementia care and what could have been done differently.