Real stories

Carers whose partners have dementia need more understanding

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! 

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!