Our Dementia Enquirers Research for Minds and Voices is still continuing, only not face to face, as would have been ideal, but via Zoom and on Tuesday me and Damian did another interview, this time with a couple. It reminded me how I’m living with an unwanted companion where my playmate had his lovely wife, with the right attitude to enable rather than disable. Care partners attitude is so important to how the person with dementia lives, yet I know I’m lucky in not to have to rely on that special someone.
I’ve often said that care partners and people living with dementia live parallel lives, rarely meeting yet both equally important. Whereas the only companion I have at home is dementia, but that’s how I like it, only having to cope with me outmanoevering dementia and not having cope with someone else coming at it from another direction…
I had a sharp reminder of how painful the sun can be during the recent hot weather. Sun tan lotion never occurred to me….and it still didn’t register when I got home from my trundle with what appeared to be a painful sore neck. Even the next morning when the hot shower stung, I didn’t have a clue why, couldn’t work out anything logical, no hints to help me discover why….then I went for another trundle and the sun beating down on my neck suddenly dawned the realisation of why it was painful – simple sunburn….
I was actually shocked that I hadn’t thought of it. I’d always used sunscreen in previous years, but this year dementia had taken away that memory. If I lived with my daughter she would have reminded me instantly…..but that’s a disadvantage of living alone I suppose. No one to remind me there and then. I just muddle through and suffer the consequences when I get it wrong….but what does it matter..? My neck was fine after a few days so all is well again….
Because I live alone, I have to find a way or dementia will have the upper hand. I try and keep my unwanted companion firmly in it’s place but obviously, sometimes, it’s grip is tighter than I can hold down and it rules the house. Take for example, the suppers I find in the microwave the next day when I open it for that days supper, all dried up and unrecognisable. I just clear up the mess and start again….my uninvited companion laughing in the wings. If I lived with someone they would have reminded me, or probably cooked for me. But then I might not even be able to use a microwave, deducting yet another skill from my ever diminishing tick list of skills….so in my mind, what does it matter? It’s not a failure, just a mishap.
I need to be alone to make my own mistakes, just like you would do with a child, only we don’t often learn from our mistakes, but it makes us feel good to keep trying…makes me feel good to sit there with food in front of me that I’ve made – notice I said ‘made’ and not ‘created’…..long gone have my excellent culinary skills of a previous life….
I feel good, pottering in my garden, not weed free but who cares? The weeds aren’t in such numbers as to strangle the flowers, so everything is fine.
I feel good mowing my own lawn, with wiggly lines instead of the perfect precision of old, with edges crisp and straight that are now, at best, can be described as simply edges …..but what does it matter? They’re my wiggly lines and my wiggly edges and as long as I can still manage in a fashion I’ll keep going. I have my regular birds that come and keep me company
Stuart helps me with the heavy and big things, the hedges too high for me to reach without a ladder….I learnt recently that step ladders are out of bounds now 🙄……
But it’s me making the decision when to ask for help and when to muddle through as happy as Larry……no one there to take over or criticise.
‘Burden’ came up quite a few times during the interview. That feeling of being a burden to our care partners. When all this Covid stuff started, my daughter and son in law asked if I wanted to move in with them but I knew it wouldn’t work. I’d feel guilty for impinging on their daily life. They’d see me struggling and come to help instead of just leaving me to it to make a mess as I would at home. So kindness sometimes stifles those tiny things we can still do albeit not in the right way or perfectly. The only thing that almost swung me round was the thought of being with Billy all the time….but then I thought how he’d be out with his mates most of the time,
Perfect doesn’t exist in my language any more as I know everything I do now wouldn’t have been acceptable to me years ago, but now I can say, ‘what does it matter’?
So living alone helps me cope with my unwanted and invited companion of dementia and that’s how I want it to stay…….