Carers whose partners have dementia need more understanding

Cordelia Galgut wants people to stop minimising carers’ experiences, especially when their partner lives in residential care. 

My partner of 42 years and my wife has been in residential care for two years now. 

As anyone in my position will know, it was an unspeakably hard decision to have to make, but I knew I couldn’t cope any more on my own and that my wife needed round-the-clock care. 

The huge negative emotional impact on me of making that decision and of coping with her in residential care continues to take a massive toll. 

However, most people expect me to be used to it and to have moved on by now. 

People still tell me with alarming regularity that I should get on with my life. Even a month or so after she moved into her home, people said similar things, as if the slate were wiped clean as soon as the move was done. 

It’s hard to describe what this did and still does to me emotionally. I want to use expletives! 

Cordelia Galgut

Cordelia lives in London.

Discomfort and fear 

The psychologist in me knows that it is very common for people to blank out other people’s distress, no matter what it is a result of, because it triggers their own fears. I know dementia is a disease that it is incredibly hard not to be terrified of developing. 

And of course, quite a lot of people have experience of (usually) a parent getting it. So, on one level, I understand the need for people to distance themselves. 

But the honest thing for someone to do would surely be to own their discomfort and fear? 

Perhaps that is me expecting too much – most people are probably not even aware of either how they are reacting or why. I wish they were, though!

Still a lot to do 

People just don’t want to know how hard it is to have my beloved partner in a home. They often look at me incredulously when I try and explain the complex mixture of emotional responses I inevitably have. 

People also don’t seem to be able to compute that there is still a lot to do. I’d say it is overall harder emotionally to deal with my situation now than when my wife was at home, though obviously not as hard physically. 

However, I have a lot of health problems and, amongst many other things, I hugely miss the practical support she gave me as I struggle on alone. 

A low bar 

I’d say that, overall, the way that I am surviving currently is by setting the bar very low when it comes to others. 

I’m protecting myself from those – the majority in my case – who watch, ears and eyes largely closed, from the sidelines. A sad state of affairs, I know, but I don’t think I am alone in experiencing this version. 

Even if people could manage to suspend their judgement about me and my situation a tiny bit, that would help enormously. I live in hope! 

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I am so comforted to read this article as it echos all I am feeling and experiencing now. Thank you for sharing this.
I very much relate to Cordelia's thoughts and words on the lack of empathy by others. My husband has been in care for 10 months and I often wonder at the seemingly lack of understanding by others, and how readily they give me advice as to how I should move on. However, we had a profoundly disabled daughter who died aged 41, and we experienced the same advice as to how we should live and care for her. I learned to accept that they could not understand, any more than I could understand living with terminal cancer as I had no such experience.I learned to ignore their "helpful comments and Life became less stressful. I have adopted the same coping strategy with "Helpful Friends" now my husband has this dreadful illness and I have had to accept shared care as I cannot do it alone. I am one who can understand some of your hurt Cordelia but just continue to cherish your wife and be grateful for those who do try and understand.
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