I’ve had conversations with many people lately about the struggle, frustration, guilt, joy and loneliness felt by those caring for loved ones with dementia. It got me thinking the impossible question – which would I prefer, to be the one with dementia, or to be the one caring for and watching the person I love become a shadow of their former self? May sound an odd choice to question, but each has it’s own unique tragic side. Both sides of the story are polar opposites in relation to challenges faced.
For those caring, the daily challenge seems one of survival. No one would question the love they have for the person – this they have in bucketfuls – but at what cost to their own life? After all, many have had to give up work, their former lifestyle, have friends who no longer visit. They have the daily challenge of keeping their loved ones feeling safe and secure – no mean feat when faced with the constant repetition of the same question of who they are and where they are. Their love and loyalty know no bounds but at what cost?
As someone living alone with Alzheimer’s and currently in the early stages – I’ve come to the conclusion that I’m relieved I live alone, not to have a partner. I don’t think I could have asked or expected anyone to devote their life to me when I start to lose the mental capacity to look after myself. I certainly don’t want my daughters to have to make that choice. That’s why the decision has already been made, discussions had and documented in my Lasting Power of Attorney. I couldn’t live with the guilt of them having to make that emotional decision themselves in the future.
So much more needs to be done for those living alone with dementia but also to support those who have put their lives on hold to care for a loved one – a challenging dilemma……
As always, I always trying and focus on the positives in this cruel situation I find myself in. The advantages are there is no one to question my reason for watching the same programme back to back or my wish to sit in silence without any noise to confuse the brain. We can’t change what is happening to us so we have to adapt our lives to make it easier to live with this disease.
However, it also means you have no one to comfort you on the darker days, no hugs of reassurance, no words of encouragement. I’m lucky as I get hugs from my daughters each time I see them, down the phone and on emails…
There are many people living alone with dementia who must just drift over the edge of losing capacity without knowing or planning – what happens to those? As friends stop visiting or they feel in need of support and no one is there…..
Kate Swaffer’s blog is absolutely fantastic – highly recommended. Click on the link below for another woman’s experience of living alone with dementia:
Remember, as always, this is just my opinion of the subject. It’s purpose purely to evoke thoughts and discussion. Everyone has their individual right to their own opinion and experience. I can only give my view or experience as everyone’s experience is different.
Feelings remain when facts are forgotten