Visiting care homes this week - what to look for and ask
- Thread starter Loopiloo
- Start date
Thanks Izzy, Saffie, Gill for your photo comments. Yes it is nice to put faces to names, I love seeing TP photos.
Just looking at TV weather map, I can't believe the temperature is 20-22C in the far south of England! We've had rain quite often, yesterday I drove to a lovely (but expensive!) farm shop nearby through deep floods on the farm road. When it has been sunny there has been an annoying chilly wind.
Yes Saffie, it does help to talk/write to others in similar circumstances or who have experienced it. The experience and knowledge of TP is vast and I have learned a tremendous amount this past near year, far beyond the limitations of the official books on dementias.
I was recently thinking that if I have any money when I die I'd like to leave a legacy to whoever is responsbile for dementia training, nurses and carers. I feel so strongly about the need for training, knowledge of the realities of dementia, the importance of gaining first hand experience.
Perhaps I have quoted this before but one care home Report I read concerning a home which takes both frail elderly and dementia residents said:
Oh, TV's in hospitals! In the first hospital when Henry was quite ill, in an eight bed ward, he was close to a TV, huge screen, which was too loud and he kept asking me to turn it down. Both the present Community Hospital sitting rooms are dominated by a large TV, and one man who has taken it over has the volume too loud. He has been in and out of the hospital four times, for many months at a time, and rules the roost. Resents anyone turning down the volume, or choosing another programme.
In the care homes I have visited, all sitting rooms have large TV's on, although two do have a quiet sitting area which I parti
cularly liked.
Although I was told they try to encourage residents into the sitting rooms rather than spending too much time in their rooms alone, I have bought a CD player for Henry's care home room as he is - or was - a music lover, and musical himself. Although doubt if he would be able to work it by himself now.
Good care homes do have activities, occasional concerts etc. Ask about that, or/and look for their notice of forthcoming events. Some homes claim to have a good activities programme yet Care Commission Reports say otherwise.
Although again I'm not sure Henry would participate, unless coaxed, now he has lost interest in so many things. He does like to 'people watch' and listen, even if he is quiet himself. There is more staff in the hospital; nurses, carers, domestics, and he takes a keen interest in them through the glass panel between sitting room and corridor. I see a lot less staff around in care homes.
I would have postponed my leg lymphoedema treatment if it had not become so bad and painful, too much going out, on my feet, and I do need it treated six monthly. (four monthly is recommended by the experts) Also should have three weeks as it is half way through the second week before there is any improvment, but two weeks is better than none at all.
No my daughter is not nearby, she is 150 miles away up in Aberdeenshire, moved there 32 years ago. We saw more of her and our grandchildren when we were all younger, but nowadays visits are few and far between, and we can no longer travel up there. So her visits are precious, but even under normal circumstances always hectic. I can't keep up with her pace. She also packs a lot in and catches up with near life-long friends, one very special one in particular.
We tend to too often sit into the wee sma' hours talking, but not this visit, must be sensible about that, a lot to fit in. By nature a night owl (also daughter) I'm getting too old to bounce back next day!
Do you visit Dave every day? I did do that, but have not been able to keep it up. I miss Henry when I miss a day, it feels like a long time since I saw him, and I worry about him missing me.
Poor Dave being in pain, tired, and the noises. Does he have a room of his own? Henry was better when the second hospital moved him from a four bed ward to a single room. The Community Hospital is all single en suite rooms, I think 19 o 20 in his ward, and 25 or 26 in another ward. The doors between the two wards are locked.
Night night.
Loo xxx
Just looking at TV weather map, I can't believe the temperature is 20-22C in the far south of England! We've had rain quite often, yesterday I drove to a lovely (but expensive!) farm shop nearby through deep floods on the farm road. When it has been sunny there has been an annoying chilly wind.
Yes Saffie, it does help to talk/write to others in similar circumstances or who have experienced it. The experience and knowledge of TP is vast and I have learned a tremendous amount this past near year, far beyond the limitations of the official books on dementias.
I was recently thinking that if I have any money when I die I'd like to leave a legacy to whoever is responsbile for dementia training, nurses and carers. I feel so strongly about the need for training, knowledge of the realities of dementia, the importance of gaining first hand experience.
Perhaps I have quoted this before but one care home Report I read concerning a home which takes both frail elderly and dementia residents said:
I was horrified when I read this having assumed that any home caring for around 40 dementia residents, all in different stages, would have such training, and be experienced. Or being supervised by more experienced staff.
Oh, TV's in hospitals! In the first hospital when Henry was quite ill, in an eight bed ward, he was close to a TV, huge screen, which was too loud and he kept asking me to turn it down. Both the present Community Hospital sitting rooms are dominated by a large TV, and one man who has taken it over has the volume too loud. He has been in and out of the hospital four times, for many months at a time, and rules the roost. Resents anyone turning down the volume, or choosing another programme.
In the care homes I have visited, all sitting rooms have large TV's on, although two do have a quiet sitting area which I parti
cularly liked.
Although I was told they try to encourage residents into the sitting rooms rather than spending too much time in their rooms alone, I have bought a CD player for Henry's care home room as he is - or was - a music lover, and musical himself. Although doubt if he would be able to work it by himself now.
Good care homes do have activities, occasional concerts etc. Ask about that, or/and look for their notice of forthcoming events. Some homes claim to have a good activities programme yet Care Commission Reports say otherwise.
Although again I'm not sure Henry would participate, unless coaxed, now he has lost interest in so many things. He does like to 'people watch' and listen, even if he is quiet himself. There is more staff in the hospital; nurses, carers, domestics, and he takes a keen interest in them through the glass panel between sitting room and corridor. I see a lot less staff around in care homes.
I am the same! I have indefinitely postponed two appointments, plus I have not kept my haematologist consultant appointment in Edinburgh. I should have gone in November!
I would have postponed my leg lymphoedema treatment if it had not become so bad and painful, too much going out, on my feet, and I do need it treated six monthly. (four monthly is recommended by the experts) Also should have three weeks as it is half way through the second week before there is any improvment, but two weeks is better than none at all.
No my daughter is not nearby, she is 150 miles away up in Aberdeenshire, moved there 32 years ago. We saw more of her and our grandchildren when we were all younger, but nowadays visits are few and far between, and we can no longer travel up there. So her visits are precious, but even under normal circumstances always hectic. I can't keep up with her pace. She also packs a lot in and catches up with near life-long friends, one very special one in particular.
We tend to too often sit into the wee sma' hours talking, but not this visit, must be sensible about that, a lot to fit in. By nature a night owl (also daughter) I'm getting too old to bounce back next day!
Do you visit Dave every day? I did do that, but have not been able to keep it up. I miss Henry when I miss a day, it feels like a long time since I saw him, and I worry about him missing me.
Poor Dave being in pain, tired, and the noises. Does he have a room of his own? Henry was better when the second hospital moved him from a four bed ward to a single room. The Community Hospital is all single en suite rooms, I think 19 o 20 in his ward, and 25 or 26 in another ward. The doors between the two wards are locked.
Night night.
Loo xxx
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Thanks Pied and Nan. I hate having my photo taken!
No need for apologies, Nan, you must be exhausted and it does catch up with you. It hit me like a sledge hammer over the weekend, and this week. I must try to bed earlier before Elaine's visit and all the to and fro that week, including taking her to see the care home I visited on Tuesday. The only one I could consider as an interim placement. Although hoping it may not come to that.
Before bed shall have a quick check to see if you have written today/tonight.
Sleep well Nan, and also Pied.
With my thoughts and love
Loo xx
I hate having my photo taken! No need for apologies, Nan, you must be exhausted and it does catch up with you. It hit me like a sledge hammer over the weekend, and this week. I must try to bed earlier before Elaine's visit and all the to and fro that week, including taking her to see the care home I visited on Tuesday. The only one I could consider as an interim placement. Although hoping it may not come to that.
Before bed shall have a quick check to see if you have written today/tonight.
Sleep well Nan, and also Pied.
With my thoughts and love
Loo xx
Another late night post last night - you're right that you area night owl! I'm the opposite these days - I'm so exhausted at the end of the day that I go to bed around 8, watch TV and fall asleep, yes- often with the telly still on- but if that happens I wake around midnight or so and then can't sleep. Or, if I turn everything off properly, I still wake early. Whenever I wake I can never get back to sleep as everything just piles on to my mind. THis has been going on since Dave first went into hospital. I used to visit from 3-8pm then and was too tired to eat when I got home. I gradually decreased this the longer he was there and visit him in his present hospital in the afternoon for about an hour or two. Ye, every day - for over 6 months!
I have taken in a personal CD player for Dave as, being Welsh, heloves his choirs, but I don't think the staff give it to him. I also took a radio (battery) as they put him to bed for this rest every day and they do put that on.It doesn't drown out the shoouting and banging though! As you say, I don't think he'd manage to work either on his own.
I awake this morning feeling really upset. I was thinking back to the meeting with all the various nurses, doctors, SW etc held lat week and the comment from the nurse about why Dave wasn't getting CHC suddenly hit home. "His nusing needs aren't complex". Well, I thought, this morning, they were too complex for this hospital as you put pressure on his remaining leg, despite being told specifically that you shouldn't, which resulted in a pressure sore within days of him arriving here which led to the gangrene he now has. I also feel angry that it never even got as far as the CHC panel so am thinking of starting to make waves. I'm not a person to do that usually, especially where medical matters are concerned but I am beginning to reqalise that I'm going to have to start fighting for Dave. Do you think I'm right? The trouble is I don't want it all to backfire on him and him being discharged. It is difficult to challenge authority but perhaps that time has come.
I think I'd better start another thread to see if there is anyone here who might give me some advice as I admit to feeling a bit nervous. I'll maybe do it later.
I have taken in a personal CD player for Dave as, being Welsh, heloves his choirs, but I don't think the staff give it to him. I also took a radio (battery) as they put him to bed for this rest every day and they do put that on.It doesn't drown out the shoouting and banging though! As you say, I don't think he'd manage to work either on his own.
I awake this morning feeling really upset. I was thinking back to the meeting with all the various nurses, doctors, SW etc held lat week and the comment from the nurse about why Dave wasn't getting CHC suddenly hit home. "His nusing needs aren't complex". Well, I thought, this morning, they were too complex for this hospital as you put pressure on his remaining leg, despite being told specifically that you shouldn't, which resulted in a pressure sore within days of him arriving here which led to the gangrene he now has. I also feel angry that it never even got as far as the CHC panel so am thinking of starting to make waves. I'm not a person to do that usually, especially where medical matters are concerned but I am beginning to reqalise that I'm going to have to start fighting for Dave. Do you think I'm right? The trouble is I don't want it all to backfire on him and him being discharged. It is difficult to challenge authority but perhaps that time has come.
I think I'd better start another thread to see if there is anyone here who might give me some advice as I admit to feeling a bit nervous. I'll maybe do it later.
Dear Saffie
The very quickest of quickies, I'm running late, held up by two phone calls, one from the bank. They seem to have extremely poor undertanding of Power of Attorney. More storm clouds on my horizon.
Yes do start another thread if you have not already done so. There are people here who are going through and have gone through what you describe. I am sure they will be of help to you.
Loo xx
The very quickest of quickies, I'm running late, held up by two phone calls, one from the bank. They seem to have extremely poor undertanding of Power of Attorney. More storm clouds on my horizon.
Yes do start another thread if you have not already done so. There are people here who are going through and have gone through what you describe. I am sure they will be of help to you.
Loo xx
After visiting Henry today, who was unpleasant, then doing a few things I literally staggered in the door just after 5pm. Shattered, headache, feeling unwell. Making myself a coffee when the phone rang. I thought I am NOT answering it, probably a social worker. But I did. It was.
A different one, my usual one went on holiday from Wednesday - and phoned me at 6.40pm that night.
Henry now has an official label. "Delayed Discharge".
On and on and on about an 'interim placement' and the usual stuff I have had rammed down my throat. If I do not agree to an interim placement then a consultation will have to be arranged with the consultant. I said not before time, my husband has been in the Community Hospital almost 13 weeks and no one has consulted me. I also said I had Welfare Power of Attorney.
"Who for?"
"My husband" giving his name.
I wont rave and rant, don't have the energy for it. Which reminds me I should have a meal.
My usual SW is on holiday until Friday of next week. The 16 April. Although she told me Monday 18 April. The consultant is on holiday until 20 April.
Does that mean I shall get a week of no harrasing phone calls? No. The SW who phoned today will phone me next Thursday after discussing the matter with.... whoever.
I did tell her I had left a letter for the consultant with a staff-nurse at the hospital and was told it would be forwarded to the consultant's secretary. Perhaps this SW can do something to ensure he does read it.
But I have no hope of a favourable response from him.
Henry is definitely at the top of the waiting list for the first choice of care home.
I am at my wit's end. Have had enough.
I wish I could sleep then awaken and realize this is just all a horrible nightmare. I realize many people here must have felt that But it is not that is it. It is a living reality of a nightmare.
Love
Loo xxxx
A different one, my usual one went on holiday from Wednesday - and phoned me at 6.40pm that night.
Henry now has an official label. "Delayed Discharge".
On and on and on about an 'interim placement' and the usual stuff I have had rammed down my throat. If I do not agree to an interim placement then a consultation will have to be arranged with the consultant. I said not before time, my husband has been in the Community Hospital almost 13 weeks and no one has consulted me. I also said I had Welfare Power of Attorney.
"Who for?"
"My husband" giving his name.
I wont rave and rant, don't have the energy for it. Which reminds me I should have a meal.
My usual SW is on holiday until Friday of next week. The 16 April. Although she told me Monday 18 April. The consultant is on holiday until 20 April.
Does that mean I shall get a week of no harrasing phone calls? No. The SW who phoned today will phone me next Thursday after discussing the matter with.... whoever.
I did tell her I had left a letter for the consultant with a staff-nurse at the hospital and was told it would be forwarded to the consultant's secretary. Perhaps this SW can do something to ensure he does read it.
But I have no hope of a favourable response from him.
Henry is definitely at the top of the waiting list for the first choice of care home.
I am at my wit's end. Have had enough.
I wish I could sleep then awaken and realize this is just all a horrible nightmare. I realize many people here must have felt that But it is not that is it. It is a living reality of a nightmare.
Love
Loo xxxx
Dear Loo,
It seems to me that you are being almost constantly harassed by the Social Worker. And now by another whilst the first (how lovely!) goes on leave. Remind this one that you had to wait for four weeks before you were given the names of any homes to visit (have I remembered that correctly?) and that if they had got their act together in the first place, Henry would quite likely not now be labelled with the Delayed Discharge sticker. (Can you tell that I am very annoyed on your behalf?)
Dearest Loo, I am so sorry that to-day's visit was not a good one. Just that alone is enough to bring you pretty low, without all the hassle going on about where Henry is to go. It is possible even that Henry picked up on your tiredness and misconstrued it in some way as something directed at him. We simply do not know any more how they interpret things - we just hope they know we love them dearly and want the best for them.
Try and relax this evening. I hope you manage to sleep when bedtime comes and have a pleasant weekend. And I hope, too, that your next visit will be a good one.
Thinking of you and sending love,
Nan XXX
It seems to me that you are being almost constantly harassed by the Social Worker. And now by another whilst the first (how lovely!) goes on leave. Remind this one that you had to wait for four weeks before you were given the names of any homes to visit (have I remembered that correctly?) and that if they had got their act together in the first place, Henry would quite likely not now be labelled with the Delayed Discharge sticker. (Can you tell that I am very annoyed on your behalf?)
Dearest Loo, I am so sorry that to-day's visit was not a good one. Just that alone is enough to bring you pretty low, without all the hassle going on about where Henry is to go. It is possible even that Henry picked up on your tiredness and misconstrued it in some way as something directed at him. We simply do not know any more how they interpret things - we just hope they know we love them dearly and want the best for them.
Try and relax this evening. I hope you manage to sleep when bedtime comes and have a pleasant weekend. And I hope, too, that your next visit will be a good one.
Thinking of you and sending love,
Nan XXX
Hello Loo
I do hope you manage to take some time to relax & enjoy the sunshine this weekend in the hope you manage to recharge your batteries
have sent you a message re POA
take care & hope you manage to sleep in spite of every thing
love Gill
I do hope you manage to take some time to relax & enjoy the sunshine this weekend in the hope you manage to recharge your batteries
have sent you a message re POA
take care & hope you manage to sleep in spite of every thing
love Gill
Loo
Just hang in there, you are doing just great. Delayed discharge as far as my understanding and experience is concerned means that someone has decided that Henry can't just be moved out and that they have agreed to him staying beyond being medically fit for discharge until somewhere suitable is found. When my mother was in hospital there were several folks on just that "label" who you would have had considered needed specialist care beyond getting out of hospital, not just to be shunted out to any old place.
The fact that he is now top of the list for the care home of your choice is all the more reason to wait for one to materialise isn't it. Despite what the SW is saying! Might be worth you contacting that home and just finding out for yourself what the lie of the land is there - get feedback from the horses mouth. Will maybe help you establish that relationship too and get your face recognised around the place.
Have to run, dogs are nipping my ankles to get out...
Take Care
Fiona
Just hang in there, you are doing just great. Delayed discharge as far as my understanding and experience is concerned means that someone has decided that Henry can't just be moved out and that they have agreed to him staying beyond being medically fit for discharge until somewhere suitable is found. When my mother was in hospital there were several folks on just that "label" who you would have had considered needed specialist care beyond getting out of hospital, not just to be shunted out to any old place.
The fact that he is now top of the list for the care home of your choice is all the more reason to wait for one to materialise isn't it. Despite what the SW is saying! Might be worth you contacting that home and just finding out for yourself what the lie of the land is there - get feedback from the horses mouth. Will maybe help you establish that relationship too and get your face recognised around the place.
Have to run, dogs are nipping my ankles to get out...
Take Care
Fiona
Fiona
According to both social workers THEY could make a decision as to where Henry goes if I refuse to agree to an interim placement. This could very well be what the consultant tells them to do.
The SW who phoned today paid more attention to me being Henry's Welfare Attorney and said I should be included in whatever decision is made
The home where he is top of the list I have visited several times, met and talked with both one of the three Deputy Managers and also the Manager. So they do know my face.
The Manager said there were then no vacncies and the wait could be weeks, even months, as you are waiting until a present resident dies.
Loo xx
Fiona, that is exactly my thinking.
The someone who has decided that Henry just cannot be moved out is me. The consultant at the hospital, who makes the ultimate discharge decision, has not agreed that Henry stay until somewhere suitable is found. He wants him out as soon as possible.
According to both social workers THEY could make a decision as to where Henry goes if I refuse to agree to an interim placement. This could very well be what the consultant tells them to do.
The SW who phoned today paid more attention to me being Henry's Welfare Attorney and said I should be included in whatever decision is made
The home where he is top of the list I have visited several times, met and talked with both one of the three Deputy Managers and also the Manager. So they do know my face.
The Manager said there were then no vacncies and the wait could be weeks, even months, as you are waiting until a present resident dies.
Loo xx
Dear Nan
Yes, I can tell you are very annoyed on my behalf! Thanks.
Yes, a four weeks wait before I was given the names of homes to visit.
I find it impossible to relax, impossible not to think about it. Although I feel just a wee bit better since having my meal, I think I had gone too long before eating.
As you will see from what I wrote to Fiona, I am afraid not.
I feel I have a gun at my head. Agree to interim placement and choose a home with a vacancy (only one - well two, but one is quite totally unacceptable. Both in the next county) or we take it out of your hands and he goes where WE find a vacancy.
That is also unacceptable, so I would then have to agree to the one viewed on Tuesday, with a vacancy.
The consultant wont be one bit interested in where Henry goes, and I do feel my letter (if he ever reads it) will be ignored by him. His interest is in freeing up beds, which I do understand. But my interest is Henry's welfare, his best interests.
I do feel the social worker is to blame for a lot, she has dragged her heels from the start. Pleasant enough woman but she gittered about SO much. I preferred the sund of the one today who directly addressed the issues, listened to what I said, kept to the point.
I would think Social Services/Local Authority would not be keen on all the bother for them involved in moving Henry out of the county and then back into it when the first choice home vacancy does come up. I wouldn't put it past them to ignore that and then Henry would remain in the interim placement.
Love
Loo xxx
Yes, I can tell you are very annoyed on my behalf!
Thanks.Yes, a four weeks wait before I was given the names of homes to visit.
I find it impossible to relax, impossible not to think about it. Although I feel just a wee bit better since having my meal, I think I had gone too long before eating.
.Am delighted to read that Delayed Discharge may mean something other than I thought.
As you will see from what I wrote to Fiona, I am afraid not.
I feel I have a gun at my head. Agree to interim placement and choose a home with a vacancy (only one - well two, but one is quite totally unacceptable. Both in the next county) or we take it out of your hands and he goes where WE find a vacancy.
That is also unacceptable, so I would then have to agree to the one viewed on Tuesday, with a vacancy.
The consultant wont be one bit interested in where Henry goes, and I do feel my letter (if he ever reads it) will be ignored by him. His interest is in freeing up beds, which I do understand. But my interest is Henry's welfare, his best interests.
I do feel the social worker is to blame for a lot, she has dragged her heels from the start. Pleasant enough woman but she gittered about SO much. I preferred the sund of the one today who directly addressed the issues, listened to what I said, kept to the point.
I would think Social Services/Local Authority would not be keen on all the bother for them involved in moving Henry out of the county and then back into it when the first choice home vacancy does come up. I wouldn't put it past them to ignore that and then Henry would remain in the interim placement.
Love
Loo xxx
The fact that they haven't got a place is , ironically, a good sign that it is a good home.
I do hope you are ok, Loo. Hope you get to relax. It is horrible when you get that sinking feeling when the phone rings isn't it.
Take care,
Love ,
I do hope you are ok, Loo. Hope you get to relax. It is horrible when you get that sinking feeling when the phone rings isn't it.
Take care,
Love ,
I wish, Sylvia.
If you knew Henry and had seen him before his hip fracture, then you would see how drastically even his appearance has changed. Physically he looked reasonably fit and well, just the mind was ill. His hair has come out in clumps.
As for me, after my cancer diagnosis some years ago, apart from having expected me to die, I think a lot of people thought that after treatmemt I'd have become very thin and frail looking. Instead I actually gained weight!
Too much! I just happen to be one of those people who look a lot better than they actually are!
It runs in the family. My Dad who lived his last 20 years in Australia and came home every second year had a heart attack while staying with my brother in London when he was 79. The doctors would not believe his age, thought he was in his early sixties. Dad got my brother to take in his passport as proof of his age!
Then he discharged himself from the hospital, drove himself almost 500 miles up to Scotland - without an overnight break - arrived shattered, slept 24 hours and was fine. All this because he was due to play in a Chamionship bowling match - and he won!
Even before the illness from which he died at 84 he looked around 70.I don't look younger than my age
but look better than I feel! Love
Loo xx
Gill, Izzy, Pied xxx
Thanks for your message, Gill. I'll read and reply shortly.
Also your reply, Izzy, and oh for a magic wand. For all of us.
Yes, Pied, that sinking feeling when the phone rings.... Our previous phone could be switched off without affecting the internet connection - well, at least it didn't ring! This one cannot!
Love
Loo xx
Thanks for your message, Gill. I'll read and reply shortly.
Also your reply, Izzy, and oh for a magic wand. For all of us.
Yes, Pied, that sinking feeling when the phone rings.... Our previous phone could be switched off without affecting the internet connection - well, at least it didn't ring! This one cannot!
Love
Loo xx
Loo
Thanks for your reply. I wasn't implying that someone in Authority had broken ranks and crossed over to consider you and Henry in all these shenanigans. What I was inferring was that they had at least recognised him as a delayed discharge which in itself infers some level of acceptance of the stuation on their part. I have just done some reading on delayed discharge in Scotland and surprise surprise there are hundreds of folks in the same situation for very much the same reasons you are experiencing. There is also various interpretations of the law surrounding about interim placements and whether they can be enforced or not (from what I can gather it ties into people's right of choice in Health services in Scotland). I think they have to be seen to be managing the problem and what I found VERY interesting in one report was that movement from an acute hospital bed to a rehabilitation unit WAS seen to be an interim placement! Might be worth keeping that point up your sleeve.
I can feel your frustration and know how wearing all of this is on a daily basis on top of everything else you are having to deal with too. Please don't lose sight of the fact that you ARE winning so far - if you weren't they would have just moved him a couple of weeks ago to one of those interim places wouldn't they - you're doing everything right and moreover you are always the best ambassador for Henry's interests. Don't let the SW or the hospital try and make you think otherwise.
I'm off to have a gander about welfare power of attorney in Scotland to see what rights that gives - if I find any snippets for you then i'll let you know.
Fiona
x
Thanks for your reply. I wasn't implying that someone in Authority had broken ranks and crossed over to consider you and Henry in all these shenanigans. What I was inferring was that they had at least recognised him as a delayed discharge which in itself infers some level of acceptance of the stuation on their part. I have just done some reading on delayed discharge in Scotland and surprise surprise there are hundreds of folks in the same situation for very much the same reasons you are experiencing. There is also various interpretations of the law surrounding about interim placements and whether they can be enforced or not (from what I can gather it ties into people's right of choice in Health services in Scotland). I think they have to be seen to be managing the problem and what I found VERY interesting in one report was that movement from an acute hospital bed to a rehabilitation unit WAS seen to be an interim placement! Might be worth keeping that point up your sleeve.
I can feel your frustration and know how wearing all of this is on a daily basis on top of everything else you are having to deal with too. Please don't lose sight of the fact that you ARE winning so far - if you weren't they would have just moved him a couple of weeks ago to one of those interim places wouldn't they - you're doing everything right and moreover you are always the best ambassador for Henry's interests. Don't let the SW or the hospital try and make you think otherwise.
I'm off to have a gander about welfare power of attorney in Scotland to see what rights that gives - if I find any snippets for you then i'll let you know.
Fiona
x
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Dear Loo, I have woken up early as usual and just can't get back to sleep.I had a bad visit today too.
But to more relevant matters for you - I can't believe that you haven't had a meeting with Henry's consultant since he's been at the community hospital. I had what they called a Care Plan Action meeting 2 weeks after Dave was moved to his. The Consultant Psychiatrist, a ward nurse, Occupational Therapist and house/ward doctor were there. That was when they first said he wouldn't be able to come home. Do the nurses tell you what is going on day to day? Dave's only do if they have to e.g. a visit to the dentist (he had/has a fungal infection in his mouth because his teeth weren't being cleaned properly).As the dentist commented, health care means all health. I would think you certainly have a right to request a meeting with the relevant staff and discuss the best care for Henry.
Dave cried a lot yesterdaY. I can't bear it when he does that. I can cope when I think he is unaware and, if not happy, then at least accepting, but not tears. The trouble is he can't tell me why so I can't comfort him and - to make matters worse, he didn't want me anywhere near him,. In fact it was me suggesting I wheel him out to the small garden that started him weeping. He was up and in his big chair - he's not in his wheelchair proper now as his leg has to be raised due to the gangrene so is in a more easy- type chair with wheels - He said "Go away, leave me alone" as if he was scared of me - it was horrible. My daughter was with me and made light of it, also pointing out that perhaps he was scared to go outside as it's been over 6 months since he's done so, but he was so obviously terrified, it was so distressing. I think maybe because he was asleep when we arrived perhaps he'd been dreaming and that had something to do with it. I called a passing Healthcare assistant to talk to him to see if he was ok with her as she is more familiar to him nowadays and he calmed down but still wept. She took him out to the garden - back wards - and we left.
Do you have the sunshine up there that we are having at the moment? I do hope so. Even though I feel such a grouch because I can't really enjoy it, it does make me feel warmer. Though it is supposed to revert to normality next week i.e. rain. This is usually my favourite time of year.
Well, must stop rambling- I've been on here an hour or so now - and make a cup of tea. As others here have said, stick to your guns for as long as you can, not easy I know and easy for us to say and not always easy to accomplish but whatever happens, you ARE doing your best for Henry. In the meantime, do try to rest,especially if your legs are painful - again easier said than done I know. Everyone is backing you. x
But to more relevant matters for you - I can't believe that you haven't had a meeting with Henry's consultant since he's been at the community hospital. I had what they called a Care Plan Action meeting 2 weeks after Dave was moved to his. The Consultant Psychiatrist, a ward nurse, Occupational Therapist and house/ward doctor were there. That was when they first said he wouldn't be able to come home. Do the nurses tell you what is going on day to day? Dave's only do if they have to e.g. a visit to the dentist (he had/has a fungal infection in his mouth because his teeth weren't being cleaned properly).As the dentist commented, health care means all health. I would think you certainly have a right to request a meeting with the relevant staff and discuss the best care for Henry.
Dave cried a lot yesterdaY. I can't bear it when he does that. I can cope when I think he is unaware and, if not happy, then at least accepting, but not tears. The trouble is he can't tell me why so I can't comfort him and - to make matters worse, he didn't want me anywhere near him,. In fact it was me suggesting I wheel him out to the small garden that started him weeping. He was up and in his big chair - he's not in his wheelchair proper now as his leg has to be raised due to the gangrene so is in a more easy- type chair with wheels - He said "Go away, leave me alone" as if he was scared of me - it was horrible. My daughter was with me and made light of it, also pointing out that perhaps he was scared to go outside as it's been over 6 months since he's done so, but he was so obviously terrified, it was so distressing. I think maybe because he was asleep when we arrived perhaps he'd been dreaming and that had something to do with it. I called a passing Healthcare assistant to talk to him to see if he was ok with her as she is more familiar to him nowadays and he calmed down but still wept. She took him out to the garden - back wards - and we left.
Do you have the sunshine up there that we are having at the moment? I do hope so. Even though I feel such a grouch because I can't really enjoy it, it does make me feel warmer. Though it is supposed to revert to normality next week i.e. rain. This is usually my favourite time of year.
Well, must stop rambling- I've been on here an hour or so now - and make a cup of tea. As others here have said, stick to your guns for as long as you can, not easy I know and easy for us to say and not always easy to accomplish but whatever happens, you ARE doing your best for Henry. In the meantime, do try to rest,especially if your legs are painful - again easier said than done I know. Everyone is backing you. x
Saffie and Fiona
Dear Saffie
I am so sorry you had such a bad visit to Dave. I had some very bad ones when Henry was in acute hospitals, ill, on drugs. One day he kept shouting louder and louder at me, waving his hands to shoo me away and shouting " I don't like you! Go away! Get out of here!" I don't know who he thought I was but certainly he did not know me. Our daughter was here for a few days so I quietly left the ward and he settled down with her.
Oh yes, tears are heartbreaking, I felt so helpless and useless on those occasions in hospital. Also visiting and seeing him sitting with his head in his hands. They don't happen now, although he still has times when he asks where he is, why, and again back to talking about home. Although he no longer remembers home, or the name of the town.
In earlier times I was told that I would attend a meeting at the hospital including some people you mention, presumably the consultant who would not recommend Henry coming home. But although I several times asked the social worker about this it never happened. I have not been included in anything.
In the acute hospitals when he was ill trying to get information from nurses was dreadful. In this hospital I used to ask regularly and had some good informative conversations with nurses. But I ask less and less now. Since the decision that he has to go into care they do not appear to want to talk to me about anything.
Yes it is sunny here and yesterday although today for the first time actually warm as we have had cold winds. I've only been out to hang a washing and it was nice to feel the warmth. But I have no desire to sit out, couldn't relax. Yes, supposed to change again next week, back to winter clothes
Haven't achieved what I intended today before our daughter arrives tomorrow. Feeling quite unwell, dreadful yesterday.
However I did write a letter to the different social worker who phoned me yesterday and I also included a copy of the letter I wrote to the consultant. My usual social worker, on holiday until Friday, seldom takes notes and goodness knows what she writes in her reports after our "chats", as she calls them. My consultant letter says it all and I included more in the letter to the social worker. So now it is all on paper in the typed word instead of what I feel is the social worker's airy-fairy approach. If anyone ever does take the time to read and digest what I have written.
How are you coping with living alone for six months? I find making a meal for only myself difficult. My appetite has gone, but now off to cook. Or take something out of the freezer that can be cooked from frozen!
I hope your next visit is better, Saffie. I am not visiting tomorrow, simply do not have the energy. Daughter hopes to arrive mid-day so I'll leave her to visit in the afternoon. Then both of us will visit Henry on Monday after a quick lunch following my leg treatment.
I shall leave the letter for the social worker at the Social Services Reception desk donstairs as cannot take it directly to the office on the top floor. Strict security and requires a pass.
Did you start another thread as you thought of doing?
Thanks for your most interesting post, Fiona, which I shall answer later. I would like to know more about interim placements.
In our area's NHS leaflet given to me by the social worker under the question "What happens if there is no place at my third choice?" The reply is "... you will then be asked to choose a care home where there are vacancies. Your name will still remain on the waiting lists for your first, second and third choice".
Then the question: " What will happen if I don't make any choices?" Reply: "If you make no choices your community care worker will then choose the most appropriate home (ha ha) that meets your needs. We regret that staying in hospital is not an option. Your consultant will set a date for discharge."
The latter is what I was told would happen if I refuse an interim placement.
Loo xx
Dear Saffie
I am so sorry you had such a bad visit to Dave. I had some very bad ones when Henry was in acute hospitals, ill, on drugs. One day he kept shouting louder and louder at me, waving his hands to shoo me away and shouting " I don't like you! Go away! Get out of here!" I don't know who he thought I was but certainly he did not know me. Our daughter was here for a few days so I quietly left the ward and he settled down with her.
Oh yes, tears are heartbreaking, I felt so helpless and useless on those occasions in hospital. Also visiting and seeing him sitting with his head in his hands. They don't happen now, although he still has times when he asks where he is, why, and again back to talking about home. Although he no longer remembers home, or the name of the town.
In earlier times I was told that I would attend a meeting at the hospital including some people you mention, presumably the consultant who would not recommend Henry coming home. But although I several times asked the social worker about this it never happened. I have not been included in anything.
In the acute hospitals when he was ill trying to get information from nurses was dreadful. In this hospital I used to ask regularly and had some good informative conversations with nurses. But I ask less and less now. Since the decision that he has to go into care they do not appear to want to talk to me about anything.
Yes it is sunny here and yesterday although today for the first time actually warm as we have had cold winds. I've only been out to hang a washing and it was nice to feel the warmth. But I have no desire to sit out, couldn't relax. Yes, supposed to change again next week, back to winter clothes
Haven't achieved what I intended today before our daughter arrives tomorrow. Feeling quite unwell, dreadful yesterday.
However I did write a letter to the different social worker who phoned me yesterday and I also included a copy of the letter I wrote to the consultant. My usual social worker, on holiday until Friday, seldom takes notes and goodness knows what she writes in her reports after our "chats", as she calls them. My consultant letter says it all and I included more in the letter to the social worker. So now it is all on paper in the typed word instead of what I feel is the social worker's airy-fairy approach. If anyone ever does take the time to read and digest what I have written.
How are you coping with living alone for six months? I find making a meal for only myself difficult. My appetite has gone, but now off to cook. Or take something out of the freezer that can be cooked from frozen!
I hope your next visit is better, Saffie. I am not visiting tomorrow, simply do not have the energy. Daughter hopes to arrive mid-day so I'll leave her to visit in the afternoon. Then both of us will visit Henry on Monday after a quick lunch following my leg treatment.
I shall leave the letter for the social worker at the Social Services Reception desk donstairs as cannot take it directly to the office on the top floor. Strict security and requires a pass.
Did you start another thread as you thought of doing?
Thanks for your most interesting post, Fiona, which I shall answer later. I would like to know more about interim placements.
In our area's NHS leaflet given to me by the social worker under the question "What happens if there is no place at my third choice?" The reply is "... you will then be asked to choose a care home where there are vacancies. Your name will still remain on the waiting lists for your first, second and third choice".
Then the question: " What will happen if I don't make any choices?" Reply: "If you make no choices your community care worker will then choose the most appropriate home (ha ha) that meets your needs. We regret that staying in hospital is not an option. Your consultant will set a date for discharge."
The latter is what I was told would happen if I refuse an interim placement.
Loo xx
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