Caregiving

I heard a voice coming from an answer-phone but I couldn’t make out the words. I recognised the tones of concern and it was obvious they weren’t just leaving a message. Not entirely sure where my parents kept their phone I followed the sounds until I heard, “Hello?! Is anyone there? Mr Tomlinson, are you all right? Can you hear me?”

I picked up the receiver, “Hello, it’s Jonathon, Mr Tomlinson’s son, how can I help?” “Mr Tomlinson has pressed his emergency call button.” My dad was upstairs and I was downstairs but we were close enough to hear one-another. I guessed he had pressed it by mistake.

My immediate reaction was to feel embarrassed and apologise and immediately reassure them that he was OK and apologise again for wasting their time. All without checking on my dad. One thing carers are afraid of is being a burden on others or wasting anyone’s time.

I hung up and ran upstairs. He was in the bathrooms on his hands and knees, groaning with a mixture of pain and shame. “Are you OK?” I asked. “No, not really.” He struggled to get the words out. A series of strokes has combined with Alzheimer’s dementia to undermine his ability to find the right words and join them together in the right order. He was in a mess. A huge nappy, full of watery diarrhoea was tangled around his ankles, the diarrhoea was smeared all over his legs and hands, the bathroom floor, the toilet, everywhere. My mum – 70 years old, his full-time carer, called from downstairs, “Are you OK up there? Do you need any help?”

“We’re fine thanks” I called back, “Just give us a few minutes.” I knew this kind of thing happened to my dad quite frequently, but it was the first time I’d been in this position, the first time I’d seen him like this. I looked around for wipes and gloves. I found some wipes on the window sill but no gloves. The wipes had dried out in the unseasonably warm early spring sun, so I had to wet them under the tap. For about 15 minutes, carefully, gently, firmly, thoroughly I washed him, starting with hands and feet, working my way gradually towards his bottom. To my surprise neither of us seemed embarrassed. I’d seen him in tears before, sobbing and saying sorry for being useless and for being too much trouble when he couldn’t help with household tasks. I think I was more afraid of that, an emotional outburst, than the mess and the foul smell. I was expecting him to be beside himself, tearfully and shamefully apologetic, but he was almost cheerful. This helped enormously. He stood up and hung onto the sink as I washed between his thighs and buttocks. “Thank you … very … much”, he managed to say with a bit of a struggle. “It’s fine”, I replied, “no problem. You’ve cleaned my bum many more times than I’ve cleaned yours!” We laughed together, “Oh yes!” he agreed, smiling.

This was not how I had thought it would be. I was expecting  us both to feel upset, ashamed, angry perhaps and disgusted. As a 17 year old working on an elderly care ward at Winchester hospital, a demented man had got really upset when I was washing him and started fighting and I had been frightened and upset. The memory has stuck with me. But this time, with my dad, we discovered affection and humour bound together by intimacy. It was the closest we had been, not just physically but emotionally, for a long time. I steadied him out of the bathroom into his bedroom and helped him dress, washing his hands once more, last of all. Then I went back and cleaned the bathroom. Then we went downstairs together. This act of intimacy made me realise, once again that a medical education and nearly 20 years of medical practice has taught me almost nothing about care-giving. Having worked as a care-assistant on an elderly care ward in my holidays when I was a medical student, I wasn’t entirely naive, but I was sad to discover that 20% of carers say that their GP practice is not carer friendly. I’m not even sure you can teach someone about giving care, you have to learn about caregiving by doing it, and you do it because you have no choice. Caring is a moral and practical obligation. For me though, in many ways it was easy, it was just the once. I am not my dad’s carer, I was just visiting for the weekend. My mum is my dad’s full-time carer. About once a month she pays a carer to cover while she has a break or my sister comes and helps. Caring full-time is far more physically, practically and emotionally complex than my single encounter. Psychiatrist Arthur Kleinman, who cares for his wife with Alzheimer’s explains,

I am not a naive moralist. I’ve had far too much experience of the demands, tensions, and downright failures of caregiving to fall into sentimentality and utopianism. Caregiving is not easy. It consumes time, energy, and financial resources. It sucks out strength and determination. It turns simple ideas of efficacy and hope into big question marks. It can amplify anguish and desperation. It can divide the self. It can bring out family conflicts. It can separate out those who care from those who can’t or won’t handle it. It is very difficult. It is also far more complex, uncertain, and unbounded than professional medical and nursing models suggest. I know about the moral core of caregiving not nearly so much from my professional life as a psychiatrist and medical anthropologist, nor principally from the research literature and my own studies, but primarily because of my new life of practice as the primary caregiver for Joan Kleinman.

At the same time that the number and proportion of elderly people is rising and people with disabling chronic diseases are living longer, our government is cutting social care and underfunding the NHS. And so the burden of care is falling, and will continue to fall, on families, neighbours and informal networks of unpaid volunteers. David Cameron’s rhetorical ‘hard-working families’ will have to give up their jobs to care for their families. Their ‘hard work’ will be providing unpaid, personal care for their families, providing the social care that a low-tax economy cannot provide. Sooner or later, most of us will be carergivers or cared-for.

This is a good time to think about Carer’s week and the kind of society we want.

Further reading:

“Unendurable” cuts threatening vital home care Adult social services press release

Crisis? What Crisis? Roy Lilley blog about Saga withdrawing from nursing homes

Arthur Kleinman on Caregiving

What are we afraid of? Growing old without social care.

Listening and Learning from people with dementia and their carers.

A Perfect Storm. The impact of welfare on healthcare