Facebook and Care Homes.

Some see aging as a lack of dignity

Iam64

If I ever need residential care, I’d hate to have photographs of myself there posted on Facebook.

Given how frail and incapacitated many who can only be cared for in residential care, isn’t there an issue of informed consent? As we age and our capacities diminish, privacy and dignity are increasingly important.

I would not have given consent on behalf of my mum

That is where a relative or friend would give or withhold consent in accordance with your wishes if you weren't up to making that decision yourself. Anyone who halfway knew you would surely know what your attitude would be to that and then decide accordingly - based on your views etc. Hence why I would have refused for my mother and given consent for my father (he'd made his views plain enough years before - when he told me that a doctor had asked if it would be okay one time to have various medical trainees come in and study what one of his illnesses was like as part of their training). Cue for my father saying "Well - they need to learn - so bring them in". But my mother would have had 40 fits about the same request - especially given she'd been pretty when she was young and age had taken away her looks. But I knew she was an incredibly "private" person - so much so that I had to figure out with the help of a friend studying family photos that she had been illegitimate (as she'd never told me that).

I work on the basis that if I go into care it will be because I have dementia so I will be so out of it, I will be unaware of whether anything happening to me is demeaning, (in the eyes of other people) or anything else. So I will be completely immune to feelings of embarressment or shame. All that will matter is what my children and those dear to me feel.

I would expect them to ignore any feelings about what I would have done and felt when I was in full possession of my senses and use only their feelings as their guide. I will already be as good as dead to this world.

I hope my adult children will advocate on my behalf if the time comes when I no longer can.
Treating someone as though ‘they are already as good as dead to this world’, is abhorrent.
We all deserve to be sensitively cared for.

I was not clear. I am not talking about being treated as if I was dead to the world, but that, I would not know what was happening because I would be mentally effectively unaware of what is happening round me and its signifcance.

I absolutely agree that everyone, whatever their mental state should always be treated with respect, dignity and care. That is why I say decisions about me will be made by my children, who I trust would want to see me treated in a way that they respected me. But I would not be in a position to care one way or the other, as long as I was comfortable and not subject to anything that distressed me.

M0nica - That sounds sad to "write off your own judgement" totally if you do get dementia - aw....

With one parent having had vascular dementia and the other one having had (undiagnosed!) Alzheimers - but her doctor and I both knew she had it = I would say it's a bit of "flash and flare" type of thing. I may be wrong - but I think personally that the person behind the illness sorta "comes and goes" a bit. It's not just "There they were gone - and the body is functioning still".

It feels like an appropriate way of looking at things for anyone in a "responsible" position to think "What would they want whilst they were still fully themselves so to say?" and act accordingly. Same as you wouldnt expect them to eat one type of diet if you knew that they'd normally eat another type of diet (no point in feeding a wholefood vegetarian a meat-included junk food diet for instance).

MOnica, thanks for clarifying

I have both worked professionally with people with dementia and also cared for family members with it. I think there is a lot of difference between vascular dementia and Alzheimers.

Butto be more clear yet aagain. I am writing very unclearly today.

If I was in care with dementia and had reached the stage where i have no contact with reality. I want my children and others caring fr me to make decisions that are in my best interests, even if, in some cases, if dementia free it is something I was not happy with.

For example, if my children decided that it would be better for me to be in the day room for at least part of the day because the noise movement and presence of people was stimulating and made me more alive then they should arrange fr it to happen, even though they know that had I been dementia free, I would probably have preferred the uiet of room. Obviously of something they thought would be good for me causes me distress than it should be changed.

In a way, I get what you are saying, M0nica. When you have dementia, you often get Anosognosia which means you can't remember what you can't do or how she is compromised. That means that if I took what she would have wanted when she was mobile, well, etc, as being the right thing for her, I would not be making a decision in her best interest. For example, in her earlier days, she would have never consented to a DNR on her records. However, the reality is that being resuscitated would more than likely leave her in a much worse state that would be more frightening for her. The dementia is frightening already, she doesn't need any more anxiety. Consequently, I have allowed a DNR to be put on to her records.
Similarly, if she becomes ill, she will not be hospitalised unless she does something like break a hip where the pain would be awful unless treated. If she had capacity, she would want hospitalisation for illness. If I asked her now, she would say she still wanted it because she forgets how she can't walk, finds any change really frightening, etc so I have agreed that keeping her where she is will be the kindest way.
I think that is probably the sort of thing that M0nica means. My children have been told they are not to try to care for me, they must do what they think is the best way forward and not feel guilty.