Recently my BUB (dear husband / back up brain) and I were discussing the impact of the constantly changing deterioration of my abilities, how it feels for him to watch it happening, and perhaps even worse than that, there is nothing he can do about it. Quite often he notices things before I do. I wondered how it is for him to live by my side, supporting me without taking over from me or minimising my motivation to continue to strive to do things for myself.
I challenged him to write a couple of guest blogs for me, one about it feels to be watching this happening, and another about how he thinks it is best to support me. He has an even stronger opinion than me (!) about not liking the word carer, and in fact I usually have to be very direct if I want him to take over for me.
For the men living alongside a woman with dementia, it is difficult for them not to be able to ‘fix it’. For women, it is difficult not to simply take over, something most have women have done especially if they have had a family.
Sitting back and letting the person with dementia struggle is perhaps one of the most difficult of all, but for us to function to the best of our ability, or we will be inclined to give up. Initially, this must be regardless of the fact our abilities are decreasing all the time. We might need help to find ways to function with the disabilities, in the same way as someone who loses their legs or eyesight has to adjust the way they operate.
When dementia comes along, I believe it is imperative our partners let go of their inherent male or female roles, and become more like a disability advisor, and our BUB’s, working together with us on the challenges ahead. When the time comes, there is no doubt they will probably have to take over, but by then hopefully we won’t remember it!