I can't do this............
- Thread starter Skye
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Dear Hazel,you give so much to us all.I hope John improves and you can rest for a while.My thoughts are with you both.love elainex
Sorry to hear your news about John. Tomorrow is another day and I just hope and pray there is some improvement.
Thinking about you. Jan
Life is a b... - that is not the first time this week I have heard this.
Thinking about you. Jan
Life is a b... - that is not the first time this week I have heard this.
So very sorry that things aren't going well with John, Hazel. You are doing all you can at the moment. Be at peace with yourself. No-one could have done more to support John than you have. It may still be that he improves enough to come back home. Take it day by day. His condition still seems to be fluctuating greatly.
Thinking of you
Blue sea
Thinking of you
Blue sea
A gamble
Hello Hazel, sorry the skies are looking grey again. This is what I think. Depending on your view of the care that he is receiving in hospital, John may be better off in the nursing home. However, if you think that the hospital is playing its part to the full, and the surroundings are not too distracting, and you can reach it quickly, then hospital would be as good as the NH. My experience of hospital , for my mum, was that it was noisy, confusing and unreliable.
Nursing homes are by no means perfect either, but the more tranquil surroundings, (and more homely atmosphere) makes it more likely that John will calm down, I think. This advice reverses if the NH is more difficult for you to access. The thing that goes most in John's favour is how easy it is for you to play a role in his care. ( I don't mean 24/7 of course, but reasonably frequent and allowing yourself enough time to recover and relax betweeen visits.) It's a gamble whatever course is chosen, but the best you can do for John is to look after yourself and keep yourself rested enough to put in whatever you need to do when the time comes.
If this is a move for John that looks longterm, try and think of yourself and not run yourself into a frazzle. The NH will give you some peace of mind, especially if you can get over there to keep a watchful eye on things without travelling the length of Scotland to do it. The NH is not the end of the world, but it may indeed be the beginning of a new chapter. PS, my mum has been in her nursing home for exactly a year this weekend during which time her weight has gone up and down. In the last month she put on 4kgs and although she HAS deteriorated, it's been a quite slow decline and she still has many flashes of humour, and understanding and intelligent response.
Think of this period as a 'storm at sea'. Sometimes all you can do is ride the waves, until the climate changes.
Good luck for the coming week, Love Deborah xx
Hello Hazel, sorry the skies are looking grey again. This is what I think. Depending on your view of the care that he is receiving in hospital, John may be better off in the nursing home. However, if you think that the hospital is playing its part to the full, and the surroundings are not too distracting, and you can reach it quickly, then hospital would be as good as the NH. My experience of hospital , for my mum, was that it was noisy, confusing and unreliable.
Nursing homes are by no means perfect either, but the more tranquil surroundings, (and more homely atmosphere) makes it more likely that John will calm down, I think. This advice reverses if the NH is more difficult for you to access. The thing that goes most in John's favour is how easy it is for you to play a role in his care. ( I don't mean 24/7 of course, but reasonably frequent and allowing yourself enough time to recover and relax betweeen visits.) It's a gamble whatever course is chosen, but the best you can do for John is to look after yourself and keep yourself rested enough to put in whatever you need to do when the time comes.
If this is a move for John that looks longterm, try and think of yourself and not run yourself into a frazzle. The NH will give you some peace of mind, especially if you can get over there to keep a watchful eye on things without travelling the length of Scotland to do it. The NH is not the end of the world, but it may indeed be the beginning of a new chapter. PS, my mum has been in her nursing home for exactly a year this weekend during which time her weight has gone up and down. In the last month she put on 4kgs and although she HAS deteriorated, it's been a quite slow decline and she still has many flashes of humour, and understanding and intelligent response.
Think of this period as a 'storm at sea'. Sometimes all you can do is ride the waves, until the climate changes.
Good luck for the coming week, Love Deborah xx
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Yesterday was slightly better than Saturday, there were more staff on the ward. However, when I went in at 5.30 to give him tea, he was saturated, as was the bed. I checked his chart, and there was no record of him being changed since 9 am!
He hardly ate anything yesterday, whereas during the week he had been eating a full meal.
Had a phone call early this morning from the manager of User and Carer, she's the person who arranges for me to talk to trainee doctors and nurses, so she carries some clout. I told her about the lack of care at the weekend, and she was horrified. She's going to speak to the consultant, and the Director of Nursing (who's responsible for the Dementia Champions course I'm speaking at next Monday!).
Then I rang the ward and asked to speak to sister. I think she'd already got the message! I said if any decisions were to be made this morning I wanted to be involved. She assured me that no transfer would take place until John was fully mobile again! Now that's a U-turn!!!!!!!!
So we'll see. I think they've got the message that I'm not going to be pushed around, but it's sad that I had to bring in the heavy guns. The care should be there for everyone.
He hardly ate anything yesterday, whereas during the week he had been eating a full meal.
Had a phone call early this morning from the manager of User and Carer, she's the person who arranges for me to talk to trainee doctors and nurses, so she carries some clout. I told her about the lack of care at the weekend, and she was horrified. She's going to speak to the consultant, and the Director of Nursing (who's responsible for the Dementia Champions course I'm speaking at next Monday!).
Then I rang the ward and asked to speak to sister. I think she'd already got the message! I said if any decisions were to be made this morning I wanted to be involved. She assured me that no transfer would take place until John was fully mobile again! Now that's a U-turn!!!!!!!!
So we'll see. I think they've got the message that I'm not going to be pushed around, but it's sad that I had to bring in the heavy guns. The care should be there for everyone.
Dear Hazel,
Why can things only be resolved with a battle.
For John to be left so long without attention is a disgrace. It cannot be justified.
I`m grateful you had the right contacts to enable your opinion to be respected, but as you say, it shouldn`t be.
I think we`re all really going to have to refuse to accept sub-standard care and make a fuss about everything we experience that is below par.
Love xx
Why can things only be resolved with a battle.
For John to be left so long without attention is a disgrace. It cannot be justified.
I`m grateful you had the right contacts to enable your opinion to be respected, but as you say, it shouldn`t be.
I think we`re all really going to have to refuse to accept sub-standard care and make a fuss about everything we experience that is below par.
Love xx
Hi Hazel
I am so sorry to hear about the time that you and John are having. Your experience with the hospital mirrors what I experienced when my Mum was there.
They did not deal particularly well with her incontinence after catheritisation. Mum wanted to regain her continence but they did not really help much. They did not encourage her to eat, nor did they do anything but clear her food if they saw that she had not eaten.
They did their cares at set times and did not notice if she was agitated nor try to find out what was wrong.
Part of it was definitely the staffing situation, but part was just sheer lack of knowledge, which will hopefully be countered by the training of dementia champions, and another part just thinking that this little old lady had dementia so what was the point.
The NH was far better served to deal with all the issues and her improvement after a month on the nursing home was enormous given her lack of improvement whilst in hopsital. On leaving hospital she was assessed as needing nursing care but within a month SW wanted to reclassify her to pure residential home status which we resisted as we knew her prognosis and didn't want her confused by constand changes all the time.
GPs still are a nightmare and without the champions who make up the home staff the residents would have little chance. Mum's GPs do not visit and have no idea of her capabilities. One believed that she resided constantly in bed and was immobile on seeing her with a UTI and would not believe it when the staff told them otherwise. They do not see her when she is "well"!!!! They seem to think let's write her off, she has dementia and isn't going to get well. They tend not to consider quality of a different style of life. The hospital ward staff were quite similar.
If John is moved to the Nursing Home do not give up hope. Mum often gets a bit depressed once she has been ill and stops eating but can pick up rapidly. It is a rollercoaster. Do what you feel you have to and try to rest as much as you can (very difficult I know!)
Thinking of you
Mameeskye
I am so sorry to hear about the time that you and John are having. Your experience with the hospital mirrors what I experienced when my Mum was there.
They did not deal particularly well with her incontinence after catheritisation. Mum wanted to regain her continence but they did not really help much. They did not encourage her to eat, nor did they do anything but clear her food if they saw that she had not eaten.
They did their cares at set times and did not notice if she was agitated nor try to find out what was wrong.
Part of it was definitely the staffing situation, but part was just sheer lack of knowledge, which will hopefully be countered by the training of dementia champions, and another part just thinking that this little old lady had dementia so what was the point.
The NH was far better served to deal with all the issues and her improvement after a month on the nursing home was enormous given her lack of improvement whilst in hopsital. On leaving hospital she was assessed as needing nursing care but within a month SW wanted to reclassify her to pure residential home status which we resisted as we knew her prognosis and didn't want her confused by constand changes all the time.
GPs still are a nightmare and without the champions who make up the home staff the residents would have little chance. Mum's GPs do not visit and have no idea of her capabilities. One believed that she resided constantly in bed and was immobile on seeing her with a UTI and would not believe it when the staff told them otherwise. They do not see her when she is "well"!!!! They seem to think let's write her off, she has dementia and isn't going to get well. They tend not to consider quality of a different style of life. The hospital ward staff were quite similar.
If John is moved to the Nursing Home do not give up hope. Mum often gets a bit depressed once she has been ill and stops eating but can pick up rapidly. It is a rollercoaster. Do what you feel you have to and try to rest as much as you can (very difficult I know!)
Thinking of you
Mameeskye
Dear Hazel, just catching up. So sorry that the improvement with John was not able to be sustained.
I do hope that things will be better today. Keeping you and John in my prayers.
Love,
I do hope that things will be better today. Keeping you and John in my prayers.
Love,
Went in to give John lunch -- had to wait half an hour because big chief consultant was on the ward. Notwithstanding the fact that we've fought for protected mealtimes, when even consultants are excluded!
Still, I didn't complain. I caught him as he was leaving, and asked about John. He said he's not one of my patients, but I thought I'd have a look at him anyway. I wonder why!
John still has the infection, which they haven't managed to pin down yet. Blood tests not specific, chest clear, can't test urine because of incontinence. Hmm! I was expected to get samples from him, I wouldn't have thought it was beyond the ingenuity of the nurses to get one.
Anyway, he confirmed that John won't be transferred until he's mobile, and they are making more effort in that respect. They actually walked him to the toilet today.
But he's very unsteady, and very weak. Still not eating. He's now able to get out of bed by himself, so it won't be long before he's ringing the front door bell!
Still, I didn't complain. I caught him as he was leaving, and asked about John. He said he's not one of my patients, but I thought I'd have a look at him anyway. I wonder why!
John still has the infection, which they haven't managed to pin down yet. Blood tests not specific, chest clear, can't test urine because of incontinence. Hmm! I was expected to get samples from him, I wouldn't have thought it was beyond the ingenuity of the nurses to get one.
Anyway, he confirmed that John won't be transferred until he's mobile, and they are making more effort in that respect. They actually walked him to the toilet today.
But he's very unsteady, and very weak. Still not eating. He's now able to get out of bed by himself, so it won't be long before he's ringing the front door bell!
Step by step.
Sad situation Hazel, and yes I did realise
Don't suppose you are getting any respite, with visiting and feeding John etc, not what respite is supposed to be about.
Still fingers crossed for you that eventually this wretched infection will be properly cleared, and you will once again have some real quality time with your dear John.
Thinking of you both, love
One aspect, but lets look to the positive side:
that has got to be a plus.
Sad situation Hazel, and yes I did realise
Don't suppose you are getting any respite, with visiting and feeding John etc, not what respite is supposed to be about.
Still fingers crossed for you that eventually this wretched infection will be properly cleared, and you will once again have some real quality time with your dear John.
Thinking of you both, love
Oh Hazel, feel so angry for you and John. Why is dementia so badly treated ?
For fifteen years we have worked very hard helping a dynamic lady leading a campaign to get a cancer centre and then to help it. Patients speak so highly of their treatment at our new Cancer Centre.
Quite rightly cancer patients are well treated, but I have no idea how dementia patients are treated here. But fills me with dread that Dee should ever get UTI or whatever and be a dementia patient.
However the bright side is that the Memory Clinic is staffed by lovely people who really care. And treatment there is good.
On that brighter note, lots of love to you both.
For fifteen years we have worked very hard helping a dynamic lady leading a campaign to get a cancer centre and then to help it. Patients speak so highly of their treatment at our new Cancer Centre.
Quite rightly cancer patients are well treated, but I have no idea how dementia patients are treated here. But fills me with dread that Dee should ever get UTI or whatever and be a dementia patient.
However the bright side is that the Memory Clinic is staffed by lovely people who really care. And treatment there is good.
On that brighter note, lots of love to you both.
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Dear Hazel,
It sounds as if John`s recovery will be long and slow. He has been, and still is, so poorly, small steps forwards are as much as you can expect.
If they are getting him up for the toilet, the increased mobility should improve things, but even so................?
Take care
Love xx
It sounds as if John`s recovery will be long and slow. He has been, and still is, so poorly, small steps forwards are as much as you can expect.
If they are getting him up for the toilet, the increased mobility should improve things, but even so................?
Take care
Love xx
Good to hear John has regained some mobility, Hazel. Is the hospital trying him with the special milky, yogurty drinks that are complete meals? These can be a good way to raise nutrition levels in people who aren't eating well. All hospitals have them available to just ask if they haven't been provided yet.
Blue sea
Blue sea
Update on John:
He's beginning to walk more, and unfortunately this means he can get out of bed and wander.
He's now totally incontinent.
He's also getting stroppy. He asks me when I go in if he can come home, and when I say 'not till you're better,' he gets mad and refuses to eat. I'm not going to go in at meal times any more, it's just making him worse. He takes it better from the nurses.
I've had discussions with the SW and the doctor this morning, and we've agreed to cancel the respite bed. I'm not sure about that in case they decide he's ready to be discharged, but they say they definitely won't be discharging him this week. I've also asked them to try to sort out his meds so that he sleeps at night.
I'm worried about his stroppiness. Before the infection he was calm and easy to manage. Now he decided what he's going to do, and does it. And he's too big for me to stop him.
I'm also having problems with the step-sons -- not that they're being nasty, but they're ganging up on me to decide what should be done -- or rather, what I should do!
But the hardest thing of all is that John desperately wants to come home, and I want him to, but I don't know how I'll manage. He'll be devastated if he has to go into a NH.
PS Sorry blue sea, I didn't answer your question. John can eat when he wants to, it's just that he's getting stroppy with me. I think he'll be better without me, but if not I'll ask about the drinks. Thanks for the suggestion.
He's beginning to walk more, and unfortunately this means he can get out of bed and wander.
He's now totally incontinent.
He's also getting stroppy. He asks me when I go in if he can come home, and when I say 'not till you're better,' he gets mad and refuses to eat. I'm not going to go in at meal times any more, it's just making him worse. He takes it better from the nurses.
I've had discussions with the SW and the doctor this morning, and we've agreed to cancel the respite bed. I'm not sure about that in case they decide he's ready to be discharged, but they say they definitely won't be discharging him this week. I've also asked them to try to sort out his meds so that he sleeps at night.
I'm worried about his stroppiness. Before the infection he was calm and easy to manage. Now he decided what he's going to do, and does it. And he's too big for me to stop him.
I'm also having problems with the step-sons -- not that they're being nasty, but they're ganging up on me to decide what should be done -- or rather, what I should do!
But the hardest thing of all is that John desperately wants to come home, and I want him to, but I don't know how I'll manage. He'll be devastated if he has to go into a NH.
PS Sorry blue sea, I didn't answer your question. John can eat when he wants to, it's just that he's getting stroppy with me. I think he'll be better without me, but if not I'll ask about the drinks. Thanks for the suggestion.
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Hazel,
I'm glad that John is getting stronger, so that his mobility is returning but sorry that this means he is able to wander. I know sometimes I wish my Dad wasn't quite so fit so that we could know that he will be more or less where we left him rather than 4 miles away, but given the choice I would rather he have his physical fitness.
Is the stroppiness also a sign that he is feeling stronger?
I know you won't take anything lying down, but you must stick to your guns about not coping with John on your own whilst his physical needs are too much for you. Please don't give in to any emotional blackmail from your step-sons, it wouldn't be in either John's or your interests to try and care for him whilst he needs physical help.
I presume the offer of respite is still available as and when you decide the time is right? If so I would wait until John has shaken off the infection and you know how he will be before you make any long term decisions.
Love to you and John.
I'm glad that John is getting stronger, so that his mobility is returning but sorry that this means he is able to wander. I know sometimes I wish my Dad wasn't quite so fit so that we could know that he will be more or less where we left him rather than 4 miles away, but given the choice I would rather he have his physical fitness.
Is the stroppiness also a sign that he is feeling stronger?
I know you won't take anything lying down, but you must stick to your guns about not coping with John on your own whilst his physical needs are too much for you. Please don't give in to any emotional blackmail from your step-sons, it wouldn't be in either John's or your interests to try and care for him whilst he needs physical help.
I presume the offer of respite is still available as and when you decide the time is right? If so I would wait until John has shaken off the infection and you know how he will be before you make any long term decisions.
Love to you and John.
Dear Hazel,
It sounds as if the improvement in John`s condition is bringing different complications.
I know Dhiren gets stroppy, but he is not as far down the road, so when he goes out, at least he can ask the way home.
The stroppiness might go if John does return home, but it really depends on whether you`ll be confident enough to take the chance. Hopefully he still has some improvement to make, and he might calm down as he continues to feel better.
It is not fair for his sons to put you under further pressure. Perhaps you could ask them to take turns staying with you, if John does come home, just until he settles, and to enable you to see how manageable he will be.
Take care
Love xx
It sounds as if the improvement in John`s condition is bringing different complications.
I know Dhiren gets stroppy, but he is not as far down the road, so when he goes out, at least he can ask the way home.
The stroppiness might go if John does return home, but it really depends on whether you`ll be confident enough to take the chance. Hopefully he still has some improvement to make, and he might calm down as he continues to feel better.
It is not fair for his sons to put you under further pressure. Perhaps you could ask them to take turns staying with you, if John does come home, just until he settles, and to enable you to see how manageable he will be.
Take care
Love xx
Hazel,
I'm sorry things aren't going as well as you'd hoped.
The definite added problem with young dementia is the physical element - luckily for me I am significantly taller and heavier than mum.
Obviously with John being so much bigger than you it will be difficult for you to "handle" him, for want of another word, and no matter what the stepsons want yours and John's physical safety is paramount.
Dare I ask what it is the step sons want to happen?
I'm thinking of you both and send you big hugs (((HUGS)))
I'm sorry things aren't going as well as you'd hoped.
The definite added problem with young dementia is the physical element - luckily for me I am significantly taller and heavier than mum.
Obviously with John being so much bigger than you it will be difficult for you to "handle" him, for want of another word, and no matter what the stepsons want yours and John's physical safety is paramount.
Dare I ask what it is the step sons want to happen?
I'm thinking of you both and send you big hugs (((HUGS)))
Thanks, Sue, Sylvia and Kate.
Sue, yes, I will still be able to get respite, provided there's a respite bed available -- and no-one can take that for granted. I know it would be unfair to keep a bed empty on the off-chance that he'll be discharged, but it was comforting to know that the option was there.
Sylvia, the option of having the sons stay with me isn't really viable. The eldest one is the only one who's close enough (the one who stayed when I went to London), and he'd probably do it for a night or two if I'm stuck, but his partner's five months pregnant.
Kate, they've been hatching up weird and wonderful plans for converting our house, turning the dining room into a bedroom -- it's part of the lounge at present, so would need a wall. Building a toilet and shower room in the garage. Buying a hospital-type bed and chair. All at my expense, of course, which I wouldn't mind if it was a real solution, but it all leaves the problem that for most of the 24 hours I'm going to be handling John on my own, and I can't.
Anyway, I'm not doing anything until I see how he is when he's discharged. It's impossible to make decisions at this stage.
Sue, yes, I will still be able to get respite, provided there's a respite bed available -- and no-one can take that for granted. I know it would be unfair to keep a bed empty on the off-chance that he'll be discharged, but it was comforting to know that the option was there.
Sylvia, the option of having the sons stay with me isn't really viable. The eldest one is the only one who's close enough (the one who stayed when I went to London), and he'd probably do it for a night or two if I'm stuck, but his partner's five months pregnant.
Kate, they've been hatching up weird and wonderful plans for converting our house, turning the dining room into a bedroom -- it's part of the lounge at present, so would need a wall. Building a toilet and shower room in the garage. Buying a hospital-type bed and chair. All at my expense, of course, which I wouldn't mind if it was a real solution, but it all leaves the problem that for most of the 24 hours I'm going to be handling John on my own, and I can't.
Anyway, I'm not doing anything until I see how he is when he's discharged. It's impossible to make decisions at this stage.
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