Waiting rooms

[Petrina]

When I was a child, one of the things that struck me about old asylums was 'waiting rooms'. The term goes back years, but I still come across it. Old people lined up in rows, probably parked in front of a television, seemingly just waiting to die.

It seems to be little different now. A care home. Rows of old people, parked in front of a television loud enough to stifle conversation but too high up on the wall to watch, no coffee tables to put things down on, ergo no access to a glass of water, a box of tissues, a magazine, a book, knitting needles, old photos, boiled sweets.

The colours are brighter. There may be a theme of some sort. There may be more staff. The television will have a flat screen. But it's still a waiting room.

Some people like this sort of room. Maybe in their own homes they park themselves in front of a television for hours. Maybe there will be other family members walking back and forth between them and the television. Maybe they will have conversations whilst the television is on.

But not everyone does. Even those that want noise may prefer it in the form of music, and if they do, they may not all want that music to be modern pop music. I have never heard classical music or old time music played in Dad's nursing home. Yet how often are people ever offered ear plugs or personal radios, mp3 players or whatever?

If you do not have dementia, you may be able to express your distress or discomfort, to insist on better conditions, but there comes a point in dementia where all you can do is to sit there and put up with it, waiting for death to free you not from your dementia but from the places in which we warehouse those with dementia.

I pray that I never end up in a waiting room.

 

[jaymor]

Yes you are right, TV on the wall and chairs all around the wall.

The TV is safe on the wall, it cannot be knocked or pulled over. The chairs are around the wall to leave clear walking space for those not too steady on their feet and gives them the chance to stay mobile and not fall. Wheelchairs and large custom made chairs need to be pushed in and out of lounges as do hoists.

It would be lovely to have seats set around a coffee table but it would be totally impracticable.

My husband's nursing home is as you describe it, the TV is on but it is on Smooth Radio and not very loud. If a resident wants to watch TV they are taken to their room where they can watch in peace. There is a table between each two chairs so each resident has access to a table. Most have a drink and a snack on, the residents are now past looking at a newspaper or magazine, though they are on the sideboard if they want one.

It definitely is not home but it is the best it can be.

The care is what is important and there are little touches to make it more like home. Each room has a letter box and a knocker on it as any front door to a home would have. Each room is painted in a different colour. Again these are touches that are probably not even noticed by the residents. As long as they get good care, good food and are safe that really is all that matters.

 

[Petrina]

I visited a friend in one such home recently and the gap in the middle of the room was, off the top of my head, at least 15' square. You don't need 15' width for a wheelchair. The tables you mention between the chairs were what I meant by coffee tables, just as I might expect in a sitting room at home. I tend to think of coffee tables out in front as what one has in front of a sofa, which I did not grow up with or find in a care home, but I did not make myself clear.

Having said that, I don't think that good food, good care and safety is all that matters. I would rather end my life eating junk food, a bit on the grubby and smelly side, but enjoying some peace and quiet.

I have several friends and relatives with dementia. I am puzzled by the care people receive. One friend repeatedly has his radio in his room re-tuned by junior care staff to radio 2 instead of radio 4. The assumption appears to be that he cannot understand radio 4 therefore he would prefer to listen to music not to programmes he cannot understand. He does not feel that way.

What a pity that there is not a care home equivalent of a DNR. A sort of LMR = let me rot. I.e. if it is thought that someone cannot look after themself properly, let them rot in their own home instead of moving them to a care home or nursing home.

I have one friend with dementia who has succeeded, with the help of friends, in persuading her local authority to let her do that. I suppose that eventually they will decide that they cannot be seen to do it, despite what she said when in full-flood of mental capacity.

Yet if someone still has capacity, we let them do that. We allow someone to value things like independence, solitude, quiet, their own way of doing things, over someone else's notion of what is good for them.

But this is not, I think, a generally socially accepted attitude.

 

[ellejay]

We must be lucky then.
Mum's CH has 2 lounges on each floor. The chairs are placed in groups & most have access to side or coffee tables. There are display cabinets & bookshelves.
( the books/magazines & ornaments change as they go walkabout & sometimes different ones come back)
There are dolls & soft toys sitting on window sills,
The cd player is usually playing 40's & 50's standards. Residents who want to watch TV usually watch in their rooms

One of the lounges on mums floor has a bar & they have "happy hour" every week.

They also have a room done out to look like a tea room type café .
They have tried to make it as near "normal" as possible.

Of course, mum still hates it

Lin x

 

[sistermillicent]

Maybe you have seen a bad care home.
Your opinion about letting someone rot in their own home rather than go to a care home sounds harsh, but I guess you have good reason for feeling that.
I hope that whatever I say about it in later years I am taken to a care home, even against my wishes at the time, and that I have a dignified end of life. I don't really care if the chairs are against the walls, I won't care if I haven't got a coffee table. I would like what remains of me to be kept neat and tidy....and I am not so fussy even now that I can't tolerate my son's strange taste in music or my husband's constant sport on TV so I don't think I will mind what is on the radio.

I can't bear the thought of living in a house in complete isolation from other people.

 

[Beate]

I have no experience with care homes, only day centres. The ones OH goes to has activities on all the time, but if people want, they can go into a quiet room and either rest or watch TV. There is no TV in the main room but there is often nice music on, always oldies. If he was alone at home, yes he would rot, and he does not deserve that. He's so happy there and I am so grateful to them.

 

[Liz57]

My mum has recently gone into a care home and when looking at ones locally I found there were lots of different places. I don't doubt the care in any of them but knowing my mum, I looked for somewhere most like her own home. What I found is a lovely place where there are two small lounges on each floor (and only 35 residents in total) with chairs around coffee tables, meals taken at tables in the lounge (not a separate dining room but separate dining areas), tea/coffee available all day from insulated jugs in the room so that mum can offer guests a drink - just like she would at home - and flowers, books, ornaments, pictures and other homely touches.
There is a TV on the wall but it's not always on. The other day I went to visit and found several ladies enjoying a DVD of "from Here to Eternity", complete with bags of popcorn! There are activities in different areas of the home at different times of the day and mum is free to join in or not as she wishes. Sometimes she likes to sit in her room and watch the birds at the feeding table outside her room (there are several all over the gardens), or the rabbits in the field nearby.
I struggled hugely to care for mum at home and it nearly wrecked our relationship but now she's settled and I've recovered from the near breakdown I had, I can't tell you how delighted I am with the care she's receiving. Such a far cry from the frightened and anxious old lady who used to phone me every five minutes throughout the day and night.
I'm sorry your experiences haven't been positive but mine have been. I'd be delighted to move into Mums care home if/when necessary but I doubt I'd have the funding when my time comes as I've given up so much of my life caring for her that my choices are going to be severely limited. Not all care homes are waiting rooms.

 

[Petrina]

As I return to this thread and read what others have, so helpfully, written, I find myself wondering how far we are influenced in this by how we live our lives when younger.

May I quote Sistermillicent: "I can't bear the thought of living in a house in complete isolation from other people. "

Let me turn this on its head.

Supposing that before you developed dementia you couldn't be the thought of not living in a house in complete isolation from other people? Would you change when you developed dementia?

I think of my parents when they were younger, building the family business, Dad taking the lead and Mum supporting him. They would come home at night and disappear into their respective rooms. They never had guests. Well, not quite never: I can remember an old family friend visiting once when I was about ten.

I used to think that it was just my family that was like this, and then I met others. Families where people sought quiet and isolation as their form of leisure.

As a young person, I thought of "me" time and "work". "Work" equated to "other people". I have pursued a career full of "other people" time. People ask me what I do for pleasure. Quite frankly, for all that I have led a very busy life and have friends, my ultimate pleasure is to be alone or with the company of a pretty moth or robin, to enjoy quiet or a little music, to sit and watch a tree or the moon, to go for a walk looking at buildings.

I interact with others and can get pleasure from doing so, but to do much of it somehow overwhelms me, makes life unbearable.

It is that variation in people that society appears to struggle to accommodate.

As an adult with mental capacity, I can go home and shut my door and switch my phone and computer off and enjoy peace and quiet. I think that by and large, if the time comes that I lose mental capacity, I shall be extremely lucky if I am able to live somewhere where the presumption is not that loneliness is assuaged by the company of others. Aloneness is, but loneliness often is not.

 

[Beate]

You do have a point there. Not everyone is sociable to the same degree. I am happy in my own company and can sit and read peacefully for hours. I wouldn't want enforced company all the time. The point of care homes is though that not everybody can look after themselves in their own home, however much they'd like to. I agree that it's easier for care home staff to herd everyone together in the lounge so they can have an eye on them. I would expect a good care home though to cater for individual needs and leave people in their own room if they wish to do so, checking on them regularly. There is a wonderful book: "And Still The Music Plays" by Graham Stokes, describing just such a scenario. I highly recommend it for its stories on truly person-centred care in care homes he's helped implement.

 

[canary]

Petrina, I have read your posts very carefully and thought about them hard, but Im afraid that I do not recognise the picture that you are painting.

You seem to be saying (forgive me if I am wrong) that people with dementia are somehow forced (by Social Services?) out of their quiet peaceful homes where they are happy, albeit a bit grubby, and shoved into a carehome that is like an asylum. And that actually it would be better for them if they stayed in their home.

I will tell you about mum. Mum lived in a bungalow on her own and had done for 30 years after she was widowed. She was fiercely independent and, although she met up with friends and was sociable she seldom invited people round and her home was her sanctuary.
Then suddenly everything changed. Firstly, she wanted to come and live with me which was not possible and the old mum would have run a mile rather than live with her daughter. Then she became anxious, suspicious and paranoid with delusions of people breaking into her house. She thought her family were stealing her money and kept phoning me up. She would spend hours round at neighbours craving their company (and making a nuisance of herself ) or getting into arguments with them. She neglected herself. She was not shopping, or eating, or washing, or changing her clothes and started going out during the night inappropriately dressed and getting lost.
Social Services did nothing. I contacted them and said how worried I was, but mum insisted that there was nothing wrong with her and she could cope and didnt need any help, so they left her. They did indeed just leave her to rot and I was tearing my hair out. She wasnt happy either, she no longer recognised her own home and was terrified by the men she was certain were coming into her bungalow and was equally sure that there was a school above her, that the children made a terrific racket on the stairs (its a bungalow remember!) and came in and moved her furniture around.
Then she had a TIA and ended up in hospital. From there she went into a care home - one you would probably hate, though not as grim as your description and the carers are lovely and are genuinely fond of her. She is now content, clean and well fed. I think the stress of trying to live independently fueled her obsessions and anxiety. Now she no longer has to worry about cooking, or housework, or strange noises (as there is always someone around to re-assure her) and has help with things she can no longer work out how to do the anxiety and paranoia has gone.

I think what I am trying to say is that once someone with dementia reaches a certain level their needs and desires change. We may look at things from the outside and feel that, somehow, they must want something else, but we should remember that their needs are not the same as ours.

 

[Lawson58]

I read a book recently called 'Being Mortal - illness Medicine and What Matters in lithe End' by an American doctor called Atul Gawande.

He had some really interesting things to say about care homes and choosing how we want to spend the last years of our lives.

Made me really rethink the whole issue though I think now I have a whole lot more to think about and know that I need to make a few decisions on my own behalf.

 

[1mindy]

I am in agreement with Canary. Mum was never sociable and kept herself to herself as dementia set in .Moving into a home was the making of her she loved it and was always telling people .Mind you it was fab .It had a bowling Green for external clubs so that was lovely. A restaurant we could book and " take her to " .A room to hire for parties and external groups. A cafe we could go to. I also loved to go there to see her. She made new friends and did so many activities. Heart warming still makes me smile.

 

[Witzend]

I visited a friend in one such home recently and the gap in the middle of the room was, off the top of my head, at least 15' square. You don't need 15' width for a wheelchair. The tables you mention between the chairs were what I meant by coffee tables, just as I might expect in a sitting room at home. I tend to think of coffee tables out in front as what one has in front of a sofa, which I did not grow up with or find in a care home, but I did not make myself clear.

Having said that, I don't think that good food, good care and safety is all that matters. I would rather end my life eating junk food, a bit on the grubby and smelly side, but enjoying some peace and quiet.

I have several friends and relatives with dementia. I am puzzled by the care people receive. One friend repeatedly has his radio in his room re-tuned by junior care staff to radio 2 instead of radio 4. The assumption appears to be that he cannot understand radio 4 therefore he would prefer to listen to music not to programmes he cannot understand. He does not feel that way.

What a pity that there is not a care home equivalent of a DNR. A sort of LMR = let me rot. I.e. if it is thought that someone cannot look after themself properly, let them rot in their own home instead of moving them to a care home or nursing home.

I have one friend with dementia who has succeeded, with the help of friends, in persuading her local authority to let her do that. I suppose that eventually they will decide that they cannot be seen to do it, despite what she said when in full-flood of mental capacity.

Yet if someone still has capacity, we let them do that. We allow someone to value things like independence, solitude, quiet, their own way of doing things, over someone else's notion of what is good for them.

But this is not, I think, a generally socially accepted attitude.

I do tend to agree with a 'LMR' policy. Safety, hygiene and good meals iare all very well, but...
Having said that, our biggest worry with our mother before we moved her to the care home, was fire, since she was constantly putting down lighted cigs all over the place, and I doubt she'd ever have managed to get out in an emergency. Where do you draw the line? I was haunted by the idea of her being trapped upstairs by fire, and unable to get out.

As for the layout of chairs etc in care homes, I well remember being horrified, when we were very new to all this and looking at CHs for FIL, at seeing people slumped in chairs around the walls of the room. But I do see now that it's simply more practical for access, for wheelchairs and people with Zimmer frames. I used to think ipeople who were 'just slumped' or 'just sitting' were lacking stimulation, but later I came to realise that by a certain stage, people are unable to do much else. Even before she got very bad my mother could never be bothered with activities. It was always the same reply - 'I can't be bothered'. I think her poor brain simply could not cope with anything more demanding than watching TV.
At her CH they do have side tables for drinks etc, and the radio is often tuned to Classic FM. The TV is often on, but hardly any of the residents ever seemed to be actually watching it.

As for the staff who are constantly re-tuning the radio to 2 instead of 4, personally I would have an extremely firm word and tell them NOT to do it. I would stick a label on the radio if necessary. I think there is sometimes a tendency for CH staff to think they know best, because it's their job, and sometimes it's necessary for relatives - that is if they've been very close and hands-on - to give them a gentle reminder that we do in fact know the person best.

 

[Delphie]

This is why, if at all possible, it's very important to look for the right care home for the person in question.

My mum was just like canary's and letting her rot would have meant leaving her in filth, hungry and in a permanent state of high anxiety and paranoia. A bit of self neglect might be fine (we all have different standards anyway!) but we're talking about real risks here, risks from food poisoning, hypothermia, even other, unscrupulous, people as our loved one stumbles through life confused, unable to tell friend from foe, often lost in their own back yard. And there's no happiness or contentment to be found in such 'independence'.

My mum would've hated the 'waiting room' kind of a place, so I looked for something different. Where she is there is indeed a tv lounge, but the seating is nicely arranged and very comfortable. It's like a 'snug'. There is another lounge where music is played pretty much all day. All kinds of music, from classical through to modern-ish hits. The seating is a bit round the walls, but it suits the shape of the room and it's made up of sofas. You'll often find residents having a snooze there, and I don't blame them.

Then there are several much smaller lounges and places to sit. There's a library, and also several sofas placed where space allows, so there's always somewhere to rest or go to be alone and quiet.

The garden is a large, wrap around one. Completely safe, so those who can and want to can take themselves off for a walk, or to sit out on one of the benches, swing seats, or under a large gazebo. And those who need a bit of help are taken out by staff. There are a couple of cats and chickens who stroll around, and lots of wild birds. The garden is mature with lots of trees and shrubs so although there are open areas, there are lots of smaller ones that feel private.

And then, of course, everyone has their own room and tv and music too, so if company's not wanted there's that option, which my mum sometimes chooses, and that's absolutely fine.

There are optional activities like singing, which my mum loves, and compulsory physio sessions geared to individual abilities and needs, but when I say compulsory I don't mean people really are forced to do anything. It's more about recognizing how important a bit of exercise can be and about the two fantastic physiotherapists who can coax even a stubborn old lady like my mum onto an exercise bike!

And the food is pretty good too. Home made. The cook makes exceptional pancakes.

I don't want to make it sound idyllic. It's still a care home and many of the residents are quite poorly so yes, some of them do sit around, watch tv a lot, sleep in their chairs. But the staff are lovely and keep an eye on everyone and, so importantly, seem to really know the people they're caring for, which means they know when to leave alone and when to encourage.

Most importantly, my mum is much, much happier there than she was at home. So that's that really!

 

[sistermillicent]

Thanks, Petrina, I understand your point of view better now.
I wish life was more fair and that everyone was able to make choices. I think to a large extent my mum was able to choose but her dementia took her in such a way that it made life hell for the rest of us. She was violent and nasty, we took it. She never washed or changed her clothes, we took the view that it was best to let her do this . She wandered where she wanted to and dad followed her to keep her safe. She continued to cook as she wouldn't let anyone else do it, and dad lost masses of weight. I could go on and on. This situation eventually changed as mum was given antipsychotics (trying to kill dad etc) and she stopped doing these things, we were able to tend to her needs and cook and look after her generally. Maybe that was cruel, but the torment she suffered from her delusions and psychotic episodes was awful for her as well as us. And we had all been hit, had knives thrown at us, been threatened enough.
Mum went into a care home a few weeks ago because she could no longer walk or even stand up, she is peaceful. They are kind people looking after her.
I do see why you would not want to be in a care home, I don't want to be either, I have already requested no medication if I have AD other than antipsychotics which I hope will cause a stroke, but the truth of it is, I don't want to have dementia.

 

[Petrina]

I'm belatedly returning to this thread to read all the comments.

When I first posted, my mood was very low.

In Dad's case, it was his choice to move to a care home. It was a free choice, as the business he built up is such that he could afford two registered nurses or paramedics on waking duty 24/7 (including employment costs and the extra costs of handover time) for far more years than he is ever likely to live. It would be fair to say that whether he had sufficient mental capacity to make a decision on it was a moot point and I'd be inclined to say not, mainly because he couldn't keep all the facts in his head for long enough, but he was certainly capable of expressing a preference and of being talked through all the relevant factors for a decision to be made by me.

So he tried out a care home and liked it and stayed put. I cannot fault the kindness of the staff. I keep an eye on him. I take care to observe the little things a care home might not assume one would. When I lean over to kiss him, I smell him. I look at the colour in his cheeks. I go in at mealtimes from time to time. I count the incontinence pants to be sure he's being changed often enough. I look at the cleanliness of his room, his ensuite, his laundry, his feet. I look at the freshness of the water in his water jug. I accept offers of a cup of tea to see that what they give him is drinkable.

I cannot say the same of all care homes that people I have known have been in, though.

I do not want to go into details, but I am myself disabled. Thus some of the limitations that this can impose are clear to me. Mention was made above of house fires. My first thought was that I think that it would be unusual to die of burning rather than smoke inhalation, and the latter, whilst horrifying to some, to others may be no worse a way to go than a hosepipe from a car exhaust or, in the days of the old town gas, putting your head in the oven. However, I would fully accept that insofar as someone may risk death in their own home, they risk causing distress for others, and also the fire example is a good one of where they might put would-be rescuers at risk, which I would not justify.

To change tack, I am now picturing both Dad and a dear old friend, both of whom are in care homes with dementia, and another who, by some miracle, lasted well into dementia in her own home.

The two in care homes would be lost without their broadsheets and magazines. Dad may seem not to know which way is up, but he enjoys the Telegraph, Private Eye and a couple of trade journals.

The one in her own home seemed to be on another planet and much was the lamenting of friends whom she no longer recognised, but she lived in a small town where she was well known and somehow always got back home without causing much inconvenience. She did not starve, but rather over-ate, forgetting when she had last eaten. I mention that to say that this thread has again reminded me how individually different we all are and how terribly difficult it is for society and care providers to cater for that.

Further, I very much take on board a comment above (I apologise for not remembering who made it) about how people can change. Indeed they do and this has prompted me to make an analogy.

I think it's often unfashionable these days to compare dementia with babyhood, but if we see people with advancing dementia as going backwards via childhood into babyhood, maybe what was a very independent-spirited adult reverts to wanting nurturing and company. Maybe the adult that valued privacy, that paid, where possible, for a private room in a hospital, not out of coyness but out of a desire for aloneness, would again become the small child that wanted its mother or auntie there for comfort.

I'm very appreciative of all here who've given thoughts and helped me to see this differently. I do not say that all my thoughts on this are now completely changed or fixed, but they are now broader and more positive. I hope that in some way this discussion might have helped one or two others.

 

[skaface]

I can't bear the thought of living in a house in complete isolation from other people.

Neither can I - I do live alone, but I'm certainly not lonely or in isolation. I go out to see people, take a walk into town, get the bus up to the local shopping centre (I do drive too, but I get the bus sometimes just so I can get to speak to other humans!).

As I remarked to a friend after I'd spent some time with him and his fiancee, it's nice to speak with someone who isn't 86 going on 5. Plus I do speak to my OH every night and stay with him at the weekend, with my phone by me in case the carers ring.

My mum does live like that, and she says she's quite happy to do so, so I hope when she does go into a home they don't try to jolly her along or make her take part in group activities as I know she'd hate it. I would too, I don't mind group activities but I won't be jollied along or made to feel I should take part.