My wife is against going into respite to give me a break.
Any ideas how to find a way round this reluctance?
Norman.
Any ideas how to find a way round this reluctance?
Norman.
reluctant respite
- Thread starter Norman
- Start date
Respite ... Help !
Hi,
I'm looking for help and advice too...
I'm also the other half of a very reluctant 'respitee' (is there such a word?)
I've been mentioning 'it' on and off for a few weeks now, praising how good it will be..etc... etc.... Lead Balloon...... comes to mind !!
"So, you're just going to DUMP me are you?" ....
Thinking of you.....
Hope we can get some answers here...
DaisyG
Hi,
I'm looking for help and advice too...
I'm also the other half of a very reluctant 'respitee' (is there such a word?)
I've been mentioning 'it' on and off for a few weeks now, praising how good it will be..etc... etc.... Lead Balloon...... comes to mind !!
"So, you're just going to DUMP me are you?" ....
Thinking of you.....
Hope we can get some answers here...
DaisyG
Hi Norman
Hi Norman,
is there any specific reason that your wife is reluctant? That might help us all to come up with creative suggestions.
I suspect - like so many of us - you might need to deploy a white lie or two (I hate doing it, but feel like there's no alternative most of the time).
Is there any reason that you might need to be away (real or invented) so that she would need to be 'looked after' (picking the form of expression of this that might work best)? Essentially, how reassuringly can you put it or how much can you play it down, so that any anxiety underlying the reluctance is minimised? Or can you simply exaggerate your own needs (ill health, maybe)? How able is your wife to be sympathetic to your own needs and well-being?
I'm sorry that I can't think of anything more helpful to say immediately, and hope that others will be able to offer suggestions. But I do hope that you get a break too - you wouldn't be arranging it if you don't need it, and if you need it she does too.
All the best
Dave
Hi Norman,
is there any specific reason that your wife is reluctant? That might help us all to come up with creative suggestions.
I suspect - like so many of us - you might need to deploy a white lie or two (I hate doing it, but feel like there's no alternative most of the time).
Is there any reason that you might need to be away (real or invented) so that she would need to be 'looked after' (picking the form of expression of this that might work best)? Essentially, how reassuringly can you put it or how much can you play it down, so that any anxiety underlying the reluctance is minimised? Or can you simply exaggerate your own needs (ill health, maybe)? How able is your wife to be sympathetic to your own needs and well-being?
I'm sorry that I can't think of anything more helpful to say immediately, and hope that others will be able to offer suggestions. But I do hope that you get a break too - you wouldn't be arranging it if you don't need it, and if you need it she does too.
All the best
Dave
Actually Norman, we never told my mother in law she was going into respite, we visited and chose the home where she went for one week, we just arrived and left her luggage in the boot of the car until she was settled in the lounge, father in law and mother in law had a cup of tea and we put all mother in laws clothes, photos etc. in her room, we then left, I think she possibly thought it was a day centre, the carers were then left with taking her to her room. We visited often over the week, she never asked to come home, it went very smoothly. This last fortnight she has been on respite, we collect her on Saturday, but we tackled it in the same manner, only taking her belongings in once she was settled in the lounge, and leaving the carers to take her to her room once we had put all her clothing etc. in. Once again, she has not mentioned home just accepts everything. I think if we had spoken about respite with her, and asked whether she wanted to go, I am sure the answer would have been no. Good Luck Norman, perhaps someone else can offer some different advice.
Carol
Carol
Oh Norman, I just wanted to let you know I will be thinking about you. My mum has started going into respite every couple of months for a weekend (Friday - Monday) just to give me a break. I do break it to her but really it just seems to go over her head and so now I just settle her in and then go back to the car and get her case. I suppose it makes it easier that she does go to the Nursing Home during the day when I am at work.
The 1st time I left her I went to collect her and she said to me 'Your Early' - that made me feel so much better and the last time I took her to a Garden Centre when I picked her up and on the way home she said 'When are you going away?'
When I take her I always come away in tears (it never seems to get any easier) and I have stayed at home on my own and did some jobs but it felt very strange so now I go away and stay with friends or relatives for the weekend. Its just so nice to be able to have a little bit of time for myself although for the whole time I can't get over wondering how she is coping.
The Manager at the home said to me that if I didn't get a break that I would be no good caring for her and if I looked after myself I would be able to continue caring for longer - it was the kick I needed.
Take Care and I will be thinking about you.
Jane
The 1st time I left her I went to collect her and she said to me 'Your Early' - that made me feel so much better and the last time I took her to a Garden Centre when I picked her up and on the way home she said 'When are you going away?'
When I take her I always come away in tears (it never seems to get any easier) and I have stayed at home on my own and did some jobs but it felt very strange so now I go away and stay with friends or relatives for the weekend. Its just so nice to be able to have a little bit of time for myself although for the whole time I can't get over wondering how she is coping.
The Manager at the home said to me that if I didn't get a break that I would be no good caring for her and if I looked after myself I would be able to continue caring for longer - it was the kick I needed.
Take Care and I will be thinking about you.
Jane
Thank you all for your answers.We saw Peg's consultant this week,he said it was 10 years from when he first made the diagnosis and it was time to think about respite.Hence my question.
I have been telling white lies now for the past 10 years.
I know the one "The whole house is being decorated/falling down/needs rewiring.
The one"You are only going in for a day or two,too balance your medication"
My wife is still very astute,reasoning would not help,It would be "I can stay here there is nothing wrong with me" That is what she told the consultant!!
No good appealing to sympathy"I need a break" AD sufferers seem incapable of being sympathetic.
My white lies over the past 10 years have worked and I do realise that in the end the only way to get anything done is to do it and so far it has worked.
Norman
I have been telling white lies now for the past 10 years.
I know the one "The whole house is being decorated/falling down/needs rewiring.
The one"You are only going in for a day or two,too balance your medication"
My wife is still very astute,reasoning would not help,It would be "I can stay here there is nothing wrong with me" That is what she told the consultant!!
No good appealing to sympathy"I need a break" AD sufferers seem incapable of being sympathetic.
My white lies over the past 10 years have worked and I do realise that in the end the only way to get anything done is to do it and so far it has worked.
Norman
Hiya Norman,
Book it, do it and don't think about it too long!
Peg will be OK, so will you.
You know that it is the next necessary step on your journey with Peg. I am sure that if Peg was well and realised how tired you are, then she would willingly give you a break; so book the respite, confident that it is what Peg would want.
With love
Amy
Book it, do it and don't think about it too long!
Peg will be OK, so will you.
You know that it is the next necessary step on your journey with Peg. I am sure that if Peg was well and realised how tired you are, then she would willingly give you a break; so book the respite, confident that it is what Peg would want.
With love
Amy
Hi Norman,
I'm afraid I don't have anything creative to offer, other than white lies which you've already been using
I think you are right that there is probably not much use in appealing to sympathy or reasoning. After 10 years, it's very unlikely that Peg has much real understanding of her condition and its impact on you. In some ways that is a blessing for her, but it does make it harder on you.
I really hope that respite works out for both of you. You have been sounding burnt out lately (completely understandable, but no less worrying) and some chance just to recharge your batteries might help. I'm sure that's easier said than done - like being told to "relax" on command.
You know that TP will be here to support you as you go forward into uncharted waters.
Take care,
Sandy
I'm afraid I don't have anything creative to offer, other than white lies which you've already been using
Norman said:My wife is still very astute,reasoning would not help,It would be "I can stay here there is nothing wrong with me" That is what she told the consultant!!
No good appealing to sympathy"I need a break" AD sufferers seem incapable of being sympathetic.
My white lies over the past 10 years have worked and I do realise that in the end the only way to get anything done is to do it and so far it has worked.
Norman
I think you are right that there is probably not much use in appealing to sympathy or reasoning. After 10 years, it's very unlikely that Peg has much real understanding of her condition and its impact on you. In some ways that is a blessing for her, but it does make it harder on you.
I really hope that respite works out for both of you. You have been sounding burnt out lately (completely understandable, but no less worrying) and some chance just to recharge your batteries might help. I'm sure that's easier said than done - like being told to "relax" on command.
You know that TP will be here to support you as you go forward into uncharted waters.
Take care,
Sandy
Hi Norman,
You sound like a pro after dealing with this for ten years so I don't know if what I can add will help but here goes. I have figured out that I just don't give my Mom a choice and tell her this is what we are going to do. So far works pretty well. I just got her into a day care once a week. She will say she loves it in one breath and that she hates it in the next and then she will totally forget she has been at all. Today she said that it was totally her idea to go which tickles me, I don't care if she thinks its Santa Claus as long as she goes !
I haven't had to use respite yet and not even sure we have that available to us like you do. But if I do and need it, I will just take her.
Best of luck Norman, I hope you get a good rest and do something fun for yourself!
Debbie
You sound like a pro after dealing with this for ten years so I don't know if what I can add will help but here goes. I have figured out that I just don't give my Mom a choice and tell her this is what we are going to do. So far works pretty well. I just got her into a day care once a week. She will say she loves it in one breath and that she hates it in the next and then she will totally forget she has been at all. Today she said that it was totally her idea to go which tickles me, I don't care if she thinks its Santa Claus as long as she goes !
I haven't had to use respite yet and not even sure we have that available to us like you do. But if I do and need it, I will just take her.
Best of luck Norman, I hope you get a good rest and do something fun for yourself!
Debbie
Norman hi,
really feel for you with this one. I have exactly the same problem but not so long lived. Mine is far less aggressive than yours but very astute as well. Although it is instinctive to 'discuss' the 'away visit' and possible for our own sanity and dignity, it must be talked about once or even twice,I think in the end you probably have to get up that morning and say 'OK here we go' and just assume that she knows all about it and is willing to do it..... And do it. Pretty pointless talking about it. I get the feeling many AD suffers have a built in survival trait which centres on 'holding fast' to the life support system, which is you. They will do anything, use anything to retain 'control'.
With such short memory span it is pointless to 'prepare' someone but Monique certainly does seem to have a propensity for retaining 'unpleasant to her' information far longer than other things... So I guess that maybe only giving the bad news once or twice ahead of the moment is the way forward.
Again I do believe, that I try, to be a reasonably pleasant person but that goes away when I think someone is taking advantage or exploiting me. That also applies to Monique - is she pushes too far then I behave to her exactly as I would to any other person/lover and have a go back.
All people with AD are not nice all the time or reasonable and do overstep the bounds of acceptable behaviour. I do not like myself too much after it but handing Monique the hard choices - the stark alternatives has worked. She has moderated her behaviour.
I write all this with a sinking heart because I am not sure I can do what say...
good luck with it
Michael
really feel for you with this one. I have exactly the same problem but not so long lived. Mine is far less aggressive than yours but very astute as well. Although it is instinctive to 'discuss' the 'away visit' and possible for our own sanity and dignity, it must be talked about once or even twice,I think in the end you probably have to get up that morning and say 'OK here we go' and just assume that she knows all about it and is willing to do it..... And do it. Pretty pointless talking about it. I get the feeling many AD suffers have a built in survival trait which centres on 'holding fast' to the life support system, which is you. They will do anything, use anything to retain 'control'.
With such short memory span it is pointless to 'prepare' someone but Monique certainly does seem to have a propensity for retaining 'unpleasant to her' information far longer than other things... So I guess that maybe only giving the bad news once or twice ahead of the moment is the way forward.
Again I do believe, that I try, to be a reasonably pleasant person but that goes away when I think someone is taking advantage or exploiting me. That also applies to Monique - is she pushes too far then I behave to her exactly as I would to any other person/lover and have a go back.
All people with AD are not nice all the time or reasonable and do overstep the bounds of acceptable behaviour. I do not like myself too much after it but handing Monique the hard choices - the stark alternatives has worked. She has moderated her behaviour.
I write all this with a sinking heart because I am not sure I can do what say...
good luck with it
Michael
Dear Norman
My mum sort of came back when I once fell sick and couldn't respond to her chattering. She even remembered my nick name which she had long forgotten !
Well, what I am going to suggest is kind of outlandish but just wanted to know what you think of it - only toying with the idea - not saying you should do it .
How about feigning illness yourself and getting that kind Sikh (or whoever) to tell Peg that you need to be in hospital for sometime.
Will this subterfuge help her to accept the idea that she can go somewhere else to get care ? Will it help her to 'see' things in 'their true light' ? Or will it be injurious ?
In the end, can you look at it all with a certain element of detachment - else, we might never be able to get the badly needed respite.
Thinking of you .
My mum sort of came back when I once fell sick and couldn't respond to her chattering. She even remembered my nick name which she had long forgotten !
Well, what I am going to suggest is kind of outlandish but just wanted to know what you think of it - only toying with the idea - not saying you should do it .
How about feigning illness yourself and getting that kind Sikh (or whoever) to tell Peg that you need to be in hospital for sometime.
Will this subterfuge help her to accept the idea that she can go somewhere else to get care ? Will it help her to 'see' things in 'their true light' ? Or will it be injurious ?
In the end, can you look at it all with a certain element of detachment - else, we might never be able to get the badly needed respite.
Thinking of you .
Day Care Refusal
The CPN visited on tuesday and gave me the news that my husbands day centre where he has been going to three days a week could no longer cope with him it wuold seem he was acting aggressivly and they feared for the other patients there. They also cancelled the first spell of respite that was due in two weeks time.
My reply was i could not cope if these three days were taken away from me, i am sole carer and these days were my lifeline.
The outcome is they have admitted him to an over 65 ward for an assessment. he has been suffering from vasc ular dimentia for four years MRI showed mini strokes. He has not been on any medication and i believe he is still having strokes as his condition has got worse over this time.
I have been told not to visit until the weekend and he could be in for a few weeks.
regards Cynron. x x
The CPN visited on tuesday and gave me the news that my husbands day centre where he has been going to three days a week could no longer cope with him it wuold seem he was acting aggressivly and they feared for the other patients there. They also cancelled the first spell of respite that was due in two weeks time.
My reply was i could not cope if these three days were taken away from me, i am sole carer and these days were my lifeline.
The outcome is they have admitted him to an over 65 ward for an assessment. he has been suffering from vasc ular dimentia for four years MRI showed mini strokes. He has not been on any medication and i believe he is still having strokes as his condition has got worse over this time.
I have been told not to visit until the weekend and he could be in for a few weeks.
regards Cynron. x x
Hiya Cynron,
How are you doing? My mum was diagnosed with multi infarcta dementia, and other than take an aspirin daily (and blood pressure tablets), the doctors just seemed to say go away and get on with it. I used to feel quite jealous of those people whose relatives were diagnosed with AD, at least they are offered some hope with aricept etc.
Hopefully as a result of this assessment an appropriate place will be found and maybe some medication to calm the aggression.
Take care
Amy
How are you doing? My mum was diagnosed with multi infarcta dementia, and other than take an aspirin daily (and blood pressure tablets), the doctors just seemed to say go away and get on with it. I used to feel quite jealous of those people whose relatives were diagnosed with AD, at least they are offered some hope with aricept etc.
Hopefully as a result of this assessment an appropriate place will be found and maybe some medication to calm the aggression.
Take care
Amy
hospital
Hi Amy.
I went to see husband on saturday. He was well drugged up and seemed like a zombie no spirit left . He did not realise he had spent three nights there. He was also wearing a pad. I asked was this routine as he has not needed them so far. The reply was he was peeing in the wrong places. While at home he was using the toilet with a bit of guidance from me. I think it is the easy option for the nursing staff.
love Cynron x x
Hi Amy.
I went to see husband on saturday. He was well drugged up and seemed like a zombie no spirit left . He did not realise he had spent three nights there. He was also wearing a pad. I asked was this routine as he has not needed them so far. The reply was he was peeing in the wrong places.
While at home he was using the toilet with a bit of guidance from me. I think it is the easy option for the nursing staff.love Cynron x x
Hiya Cynron,
Hopefully being drugged to that extent is only a temporary measure, as they start to get the balance right. No wonder he is peeing in the wrong places if he is heavily sedated. Have you managed to speak to anyone and find out what they are doing.
Mum is now in a Nursing Home. At home we managed to get away with small pads during the day by toileting her once an hour. Now she is in larger pads and only taken to the toilet every two to three hours. Not ideal, but they say that they cannot toilet her more regularly.
Keep us posted with how things progress.
Best wishes
Amy
Hopefully being drugged to that extent is only a temporary measure, as they start to get the balance right. No wonder he is peeing in the wrong places if he is heavily sedated. Have you managed to speak to anyone and find out what they are doing.
Mum is now in a Nursing Home. At home we managed to get away with small pads during the day by toileting her once an hour. Now she is in larger pads and only taken to the toilet every two to three hours. Not ideal, but they say that they cannot toilet her more regularly.
Keep us posted with how things progress.
Best wishes
Amy
Hospital
I have come across this many times, people with dementia developing supposed incontinence on hospital admission; with the confusion of a new environment, an enviroment not conducive to a dementia, your loved one may well appear to have deteriorated from when at home. With regards to pads, I agree this is not ideal, but if I found a patient repeatedly laying in a wet bed I would consider their use. Maintaining the bodies first mechanism of defence, the skin, is imperative.
I don't advocate the use of sedatives, but as a nurse have seen them used as a last resort when safety of self and others is compromised.
However, if you feel anything is down to poor management and sub standard care delivery you must talk to the ward sister. Ask to see the dementia related assessment and care plan, if your loved one is on a general ward you will probably find there isn't one, and there should be.
All the best to you both
Sam
I have come across this many times, people with dementia developing supposed incontinence on hospital admission; with the confusion of a new environment, an enviroment not conducive to a dementia, your loved one may well appear to have deteriorated from when at home. With regards to pads, I agree this is not ideal, but if I found a patient repeatedly laying in a wet bed I would consider their use. Maintaining the bodies first mechanism of defence, the skin, is imperative.
I don't advocate the use of sedatives, but as a nurse have seen them used as a last resort when safety of self and others is compromised.
However, if you feel anything is down to poor management and sub standard care delivery you must talk to the ward sister. Ask to see the dementia related assessment and care plan, if your loved one is on a general ward you will probably find there isn't one, and there should be.
All the best to you both
Sam
Hello - Lionel back from respite
Hello, I was going to start a new thread, but this is ideal.
It may not help Norman because I started to use respite (one week a year) early on in Lionels illness. He then accepted the situation, simply because he could not manage his medication but was willing to give me a break.
This time however I was very scared. I tried Lionel in a (Permenent) home earlier in the year, after his mobility took a downward turn. The home was not right for him, and they wanted to sedate him in the evenings and said he was aggressive..........I know this can happen, but I also know my dear Lionel;
Collected him today, after two and a half weeks, and all was well. Several of the staff voluntarily came and kissed him 'goodbye', and apparently he "proposed" to at least three of the prettier ones. Am so relieved as he is due back there in June.
Tonight has not been easy, an hour and a half to get him into bed, but what is new.......it's been that long before. No he cannot remember where the lounge is, in relation to the bedroom, but again it has happened before. I refuse to have any guilt feelings.
As I said earlier this may not help Norman, but please take respiteIF YOU CAN
Good luck to all, love Connie
Hello, I was going to start a new thread, but this is ideal.
It may not help Norman because I started to use respite (one week a year) early on in Lionels illness. He then accepted the situation, simply because he could not manage his medication but was willing to give me a break.
This time however I was very scared. I tried Lionel in a (Permenent) home earlier in the year, after his mobility took a downward turn. The home was not right for him, and they wanted to sedate him in the evenings and said he was aggressive..........I know this can happen, but I also know my dear Lionel;
Collected him today, after two and a half weeks, and all was well. Several of the staff voluntarily came and kissed him 'goodbye', and apparently he "proposed" to at least three of the prettier ones. Am so relieved as he is due back there in June.
Tonight has not been easy, an hour and a half to get him into bed, but what is new.......it's been that long before. No he cannot remember where the lounge is, in relation to the bedroom, but again it has happened before. I refuse to have any guilt feelings.
As I said earlier this may not help Norman, but please take respiteIF YOU CAN
Good luck to all, love Connie
Connie hi,,
So glad the respite has worked out for you... two and a half weeks can always be extended I think to ... anything. A journey of a 10000 miles begins with one small step!!!!
I had really felt so sad for you when the permanent home 'failed' and you were caught in the tender trap. I think it is not just the homes that vary but also the people we are looking after!
(I have had 'Norman times' although not as bad I suspect. I have had major depression times, wanting to leave times, wandering at night times and at the moment got 'sleeping too much' times with so much clinging it is awful but will not go to 'meetings/social groups' for a day a week.)
May be you will be able - feel able to try a more permanent solution one day...
It is never the same - in some ways that is good... stops us getting bored and complaisant!
Michael
So glad the respite has worked out for you... two and a half weeks can always be extended I think to ... anything. A journey of a 10000 miles begins with one small step!!!!
I had really felt so sad for you when the permanent home 'failed' and you were caught in the tender trap. I think it is not just the homes that vary but also the people we are looking after!
(I have had 'Norman times' although not as bad I suspect. I have had major depression times, wanting to leave times, wandering at night times and at the moment got 'sleeping too much' times with so much clinging it is awful but will not go to 'meetings/social groups' for a day a week.)
May be you will be able - feel able to try a more permanent solution one day...
It is never the same - in some ways that is good... stops us getting bored and complaisant!
Michael
