Illustration by Clara Nicoll

Mindful life: Care for carers

During my recent period of ill health, I’m reminded of how much my husband goes the extra mile to take care of me
March 1, 2023

As I drag myself painfully out of my recent depressive episode, I am struck and touched by how much support I have received from health professionals, friends, family and most of all my husband. He is the only one who has been with me consistently: hardly ever complaining, always affectionate.

I am considerably better now, and the other day I asked him, teasing, if he’d put on weight. He looked at me, and then at his midriff, and said, “I was comfort eating, you know, when you were most ill, back in the autumn.” For a moment I was struck dumb, and then overcome with shame that I hadn’t thought of this myself. Worse, I had criticised him when I should have shown sympathy.

It has always been hard for him when I have been unwell; this time we perhaps talked about that more than in the past. I asked him what it was like when I was first ill, many years ago, and found his answer profoundly moving. He said that it was as though he had lost me, as though the person he knew had disappeared and been replaced by someone else. He had no idea then whether I would ever come back. My illness has, perhaps, become less cruel to him over the years—he knows now that I will return eventually. But when I am ill, the pain for both of us is still constant, day in, day out. The person who would normally help him with any problem becomes the problem.

This time, again, his life was turned upside down while I was oblivious. Normally he would go for runs or extra dog walks to alleviate stress; instead he found himself watching slightly more Netflix, drinking slightly more whisky and sleeping badly. He prepared all the food; I ate nothing for two weeks, and little thereafter, so he ate it all. Telling his colleagues was stressful, though they were very understanding. The current trend of flexible working was a boon, but he still had to go out occasionally, either to work meetings or the shops, and he found this very hard because he would mull over what he might find on his return. He also had the difficult task of explaining to our daughters what was happening, although it’s probably easier for them to understand now that they are older.

How could any of us have eased his burden? I include myself because, although there was little that I could have done when ill, as a couple perhaps we could have planned better. For instance, I should probably have been admitted to hospital at least for the first few weeks—it was too much to expect him to take all the responsibility of caring for me. He said that I required constant reassurance, for example that my face wasn’t changing shape (bizarre, and I can’t remember thinking this now), and that he could barely cope with the worry that I wasn’t eating. Both he and my psychiatrist knew I didn’t want admission, but ultimately it was selfish of me to say no.

Admission to hospital only occurs when things are dire, however, and I’ve been wondering what support could be provided to carers when they are looking after someone at home. The healthcare staff at the hospital have always been very helpful, but the reality is that my husband has minimal contact with them and they never come to our home. He has no background in healthcare himself, and so needed reassurance that he was doing the right thing.

Many years ago, as a junior doctor, I worked in a psychiatric day hospital that provided care and activities for patients, as well as support and relief for carers. Sadly, it closed many years ago, and current resources within the NHS mean that such units are unlikely to be reopened.

But at the very least, carers should be able to get advice and support when they need it. Better investment in mental health and increased support for patients will also lessen the burden on loved ones. Otherwise, the stress and the deleterious effect on carers’ own health may lead to increased suffering—and yet more pressure on overloaded services.