Have you ever thought that what you see as kindness may be detrimental to a person?
When you’re living with dementia kindness can be good and bad for you in ways you may not have considered especially in the early stages.
We often think of kindness as being the ultimate act towards any human being. However, when someone is living with dementia, kindness can lead to that person being reliant on others far sooner than is necessary.
Quite naturally, the first thought of those around us is to protect. I always say, when I got a diagnosis of dementia so did my daughters and my friends, but little information around the best way to cope and live.
No one gives you a handbook when you’re diagnosed and one of the most difficult things for families and couples to accept is that you will need help and support and ‘training’ on how to support a loved one with such a diagnosis. It must be a difficult concept to come to terms with. After all here is someone you may have lived with for 20-30 years – why on earth would you need training? But why wouldn’t you need training on how to support someone with a complex brain disease?
Having said that, for couples I think it’s even harder. It’s harder not to disable your partner before they’ve lost the capacity to do something – for the kindness of reasons you often do something for the person but if they don’t do something day after day, no matter how long it takes them, they’ll simply forget and lose that ability altogether far quicker.
Sarah and Gemma use to do loads of things for me in the beginning – for the kindest of reasons – they’d help me with my coat on for example – but I could still put on my own coat. If I suddenly stopped and allowed them to do it, within a few weeks, I’d forget how to put my coat on and they’d be stuck with having to do that for me forever. Allow loved ones to take an hour to put on their coat to get ready to go out – that allows you to do something else.
It got me thinking about how lucky I am, in many ways, to live alone.
When you live with someone, it’s quite natural for one to move things around, tidy up, be messy – all of which would be unhelpful for me.
It’s human nature to do things for the kindest of reasons but often causes confusion.
I’m fortunate in so far as I was always an organised person so I havn’t had to learn that new skill.
If there was someone else living in the house, it may become impractical or seen as a nuisance, maybe annoying or something may get moved accidentally – all of which would lead to confusion.
I don’t have someone rushing me or questioning why I can’t remember something.
I don’t have to worry about repeating myself
I don’t have someone doing things for me because it’s quicker
I don’t have someone fussing when I’m having a bad day
I don’t have someone urging me to eat when I’m not hungry
I don’t have to think whether I’ve upset them
I don’t have to worry that I’m having to do things differently
I don’t have to worry about being slow
I don’t have anyone correcting me when I get the wrong word or date or name
I don’t feel like I’m letting anyone down
I don’t have to justify why I’m behaving as I am.
However, there are things that I miss…….
I don’t have that hug available when things go wrong
I don’t have that someone to help jog my memory
I don’t have that support when I find things difficult
I don’t have that back up brain to remind me
I don’t have the constant company
I don’t have that someone to laugh with
I don’t have someone to switch off the cooker when I forget…..😳
But all in all, I enjoy my own company and am happy to muddle along alone and my daughters are only a ‘whatsapp’ away………..and Twitter only a click away…..how the world has changed…….