Facebook and Care Homes.

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.

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.

MOnica, thanks for clarifying

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).

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.

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 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.

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).

Some see aging as a lack of dignity

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

icanhandthemback

CariadAgain my mother is almost like she is in a coma when she sleeps and often sleeps all day. Today when I went in, she managed to stay awake for 5 minutes and was then out for the count. As she is disengaged far more these days, it doesn't make a lot of difference to my visits so I just sit beside her for a while. It is what it is.

True dat.

The way I look at it is it's like they've got "one foot over the threshold" (ie to Heaven) and maybe they're sorta already heading in that direction.

I have the theory that - with my father - it was a matter of my mothers will power that was keeping him "here". She'd been doing that for about 40 years imo!!!! I was not happy with her at all about that. She wasnt someone who was going to accept his decisions for himself either way.

To me - that excess sleep feels like they're sorta "gathering up their resources" to move over the border so to say...like crouching before "making a jump over the boundary between the two Worlds".

Sorta confirmed by the way I had it reported back to me by my best friend (whose husband died pretty recently) - and I know he was spending a fair bit of daytime being asleep latterly - but then there was the "rally" of him being pretty much back to himself at one point and my friend & family seemed to be "getting their hopes up" - but I was thinking "He's nearly gone over the border now....this is last "rally" and then he will go soon". That was what happened in the event.

To me - when I hear of that sort of thing I think "Not long now....and then they'll be free and in Heaven". So I take the attitude of being pleased for them that they don't have that much longer left of being in a failing body.

CariadAgain my mother is almost like she is in a coma when she sleeps and often sleeps all day. Today when I went in, she managed to stay awake for 5 minutes and was then out for the count. As she is disengaged far more these days, it doesn't make a lot of difference to my visits so I just sit beside her for a while. It is what it is.

icanhandthemback

My mother is often asleep when I visit or she is totally disengaged so when I see photos of her being involved in the games, etc I am really pleased she is still getting some enjoyment in life.

I don't know how much of the norm it is - but my father spent a lot of his time dozing off for some time latterly. I just used to accept he'd be awake at the start of any visit - but it wouldnt be long before he'd dozed back off again. I just took it as a mercy when he was asleep - as the quality of his life was not up to much for quite some years latterly. I doubt he was in normal health from some point in his 20s/30s (courtesy of the armed forces) and then his own health problems must have started kicking in in his 40's - and he died in his 90s! A very very long time to be ill indeed - even if one only counts his own illness (and not those illnesses that were down to the armed forces).

So - yep...I work on the basis of never disturbing an older person when they're sleeping - just in case it's some of the only "peace" they can get.

So - yep...I'd never disturb him when he was asleep - as at least it meant he wasnt in pain or something.

My mother is often asleep when I visit or she is totally disengaged so when I see photos of her being involved in the games, etc I am really pleased she is still getting some enjoyment in life.

That's how I feel too, BlueBelle. When my late mother and late inlaws were in care homes, written consent had to be given for photos to be taken in the first place and also if you wanted them to be on their social media or not. They were usually only taken on occasions like birthdays or when entertainers or some other form of activity was taking place, and it was nice to see them enjoying themselves. Now that they are no longer with us, it's also nice to be able to look back and see those photos.

Oreo

You would have had the choice Witzend

I know. It was an excellent care home where residents’ dignity was respected.

The very last thing a care home would do is post pictures that were not flattering or showed the residents not having a lovely time They won’t post a pic of a lady peeling off her clothes or crying would they ? they will be the very best of what’s going on to make it as attractive as possible so I really don’t see any problem at all The photos I ve seen on fb are of entertainers singing to them or of lovely birthday cakes being brought to the table I ve just thought how happy and fun it all looks
If general permission hasn’t been sought that would be a problem but I m sure that most homes would be very careful about that
It would make my day if I d ever seen any photos of my mum having a good time instead of me constantly imagining how awful it was for her

Or a way of showing people in residential care aren't institutionalised? but I don't think I can post without bias because there are some shockingly poor examples of care

Harris27

I’m nit sure how I feel about this. Is it to reassure the outside worldthat everything is fine or to prove activities and care? I worked in childcare and you can pose activities putting extra special out. Mainly it’s to reassure people but that’s just my synic view. I hasten to add all my children were well looked after as I hope these care homes are. But why the need to show it?

Maybe to help change the view of care homes being like something from a Dickens novel.

I’m nit sure how I feel about this. Is it to reassure the outside worldthat everything is fine or to prove activities and care? I worked in childcare and you can pose activities putting extra special out. Mainly it’s to reassure people but that’s just my synic view. I hasten to add all my children were well looked after as I hope these care homes are. But why the need to show it?

My local authority is posting similar from the care homes they run. They are dignified and there is no way they won't have asked for consent.
I suppose I do understood the concerns about consent that someone mentioned about hiw valid consent can be when someone holds power so to speak over your daily life, but that can be applied to all the decisions made in care homes.

I understand if the photos aren't dignified sodapop. I do understand from that point of view but I've never seen anything I have found alarming.

sodapop

You are missing the point here, it's not the content of the pictures I object to but the fact they are put out there for all to see. Should be restricted to family and friends.

The care home my mother-in-law was in posted photos on their Facebook page, but you had to apply to join the group, stating which resident you were involved with, to be approved and able to see them.

sodapop

You are missing the point here, it's not the content of the pictures I object to but the fact they are put out there for all to see. Should be restricted to family and friends.

Still waiting to have someone explain why a carehome resident should/would be bothered about having their photos out there - since they will have GIVEN PERMISSION for those photos to be taken in the first place.

If they've agreed = they've agreed.

sodapop

You are missing the point here, it's not the content of the pictures I object to but the fact they are put out there for all to see. Should be restricted to family and friends.

And if you're ever in a care home you can make that decision, meanwhile if other people are happy to share their photos more widely they are entitled to make that choice.