Quite early in my dementia journey, I was in a Facebook group where people often posted ‘we never give up, we never lose our patience, we never complain’. They infuriated me because I believed, and continue to believe, that the burden of caring is too much for one person. Being elevated to sainthood for bearing it isn’t a fair exchange.
And yet I do feel that I failed as a carer against some external measure. My husband is too big and scary, too prone to wandering, our house too full of objects and I am too ill, for him to stay at home. But I feel bad that I couldn’t do it and feel that a better person could have. Sometimes those who care about him, and are grieving, make hurtful comments. I know they aren’t fair, but they score a bullseye on my self-doubt.
I have written elsewhere of the grief of losing my husband as he was, the life we might have had together and how I am left uncertain as to my reason for being. But it also speaks to my feelings about whether or not I am fit for purpose. Other people seem to manage quite well at having life partners. How typical of me to mess this one up!
I know this is irrational. I know my husband loved me and appreciated what I brought to his life. But I think it speaks to an idea of what a wife, a woman should be. I should have been a ministering angel and never lost my temper. I don’t believe in that idea, and yet I still feel guilt at having failed to achieve it.
I’m not alone in this. I see other chronic illness sufferers using their energy envelope for domestic tasks that someone else could do. There are lots of possible reasons they do that, but the need to feel that sense of achievement is strong. Other spouses of people with dementia mourn their inability to stay on top of things as much as the loss of the person they used to know. Far too much, we take on the burden of domesticity and make it our identity.
Loving someone with dementia is hard enough, and this extra sense of failure is unfair and illogical. But knowing this doesn’t make the guilt go away.
The Dosette Box 