Anne’s Story: Only when it is dark enough can you see the stars.
I was contacted by Anne (an assumed name), her husband, Andrew, (again an assumed name) has Lewy Body dementia (LBD), this is the same form of dementia as my dad had, so I know the particular challenges of this type of dementia only too well.
Andrew was diagnosed with LBD in 2022, Anne says “his condition progressed at a pace, his physical, cognitive and mental health slipping ever downwards, or rather lurching downwards suddenly, then plateauing for a bit then lurching downwards again”.
“I am totally exhausted and stressed out by all that is involved (incontinence night and day for example) and I am actively looking at needing to move him to a care home”
Anne commented “Until now I have just kept on coping and coping but I cannot go on like this”. Anne and Andrew have no family locally and Anne had to retire as it was no longer feasible for her to continue working, with essentially a full-time caring commitment.
Although they have a care package in place, Anne had reached a tipping point, she could no longer cope with caring for Andrew at home.
She commented “I am totally exhausted and stressed out by all that is involved (incontinence night and day for example) and I am actively looking at needing to move him to a care home”.
I’m sure many of you reading this can identify with Anne’s obvious distress.
It’s heart-rending.
Questions about using welfare Power of Attorney
Anne’s question to me was about using the welfare power of attorney Andrew had granted her to effect this move to a care home – and especially if he wouldn’t agree to the move. I often have such exchanges with people but rarely hear of the outcome.
I’m very grateful to Anne for letting me know how she got on – and for allowing me to relay this to you.
Embracing changes AS a family
“The conversation with Andrew, his daughter, sister and myself about a care home went far, far, better than we’d hoped. To our great relief and amazement, Andrew readily embraced the idea of moving somewhere else; he said he couldn’t go on as things were and that it was inevitable.
He said, being somewhere where he has people to help round the clock is what he needed. In fact, he seemed greatly relieved to realise that the means to living a happier, more comfortable life was in fact possible, and that hope was possible. We all shed a tear, it was very emotional for us all, such a big step for him to take”.
“He kept talking about it in the days that followed, asking me when it might happen and could it please happen asap. Yesterday we visited a care home I’d already visited and had immediately liked everything about it, to my great relief and joy Andrew really liked it too. He has picked a lovely room which has now been reserved for him, and the full needs assessment and financial assessment etc will take place as soon as possible”.
Fears about consent, capacity & guardianship Alleviated
“So my fears about consent, capacity, guardianship etc have abated, as Andrew is voicing so much enthusiasm for what lies ahead, making plans, asking questions, urging me to get a move on, voicing frustration that he can’t move at once (!).
I am being careful to involve other people in these discussions with him where I can and keep and share notes of what he’s saying, so that there is no doubt this is his decision and wish, that he is being consistent in this, and that neither I nor anyone else is in any way coercing him”.
“The room he has chosen very much mirrors his own bedroom here at home in aspect and feeling – it is spacious and overlooks lots of trees and was filled with birdsong when we were there yesterday. He asked lots of questions and was delighted that there’s an in-house hairdresser – he’s immediately declared he wants to be shot of his beard, which he only grew because he could no longer shave”.
“I’m keenly aware there is still a process to get through, particularly on the social work side of things, but am as confident as I can be that we can make all of this happen”.
As far as it can ever be in this situation, what a hugely successful outcome. Thank you to Anne for allowing me to share this. I wanted others to know that light can follow the depths of despair and, as hard as it is, we should maintain hope.
Anne is looking forward to dating Andrew again, to being his wife rather than his carer.
I am sure you will join me in wishing Anne and Andrew enjoyment of their shared time ahead.
Sandra McDonald
Chair of the Dementia Trust
Independent mental capacity advisor
Useful Links
Lewy Body Society : https://www.lewybody.org/
NHS: https://www.nhs.uk/conditions/dementia-with-lewy-bodies/
Office of the Public Guardian: https://www.gov.uk/government/organisations/office-of-the-public-guardian
