Mum doesn't want to go into respite

[Skyelady]

Morning all, this is my first post. Mum has Alzheimer's and goes to a day centre Mon to Fri and is OK with that and we go to work as normal. Our weekends always include Mum which is fine. We now have a holiday booked without her and I have been trying for months to book suitable respite care. Unfortunately the care home where her day centre is does not have any spare beds so we have searched and finally found a space not far from where we live.

I took Mum to see it yesterday and it was as disaster - 'they all look dead in here', 'I am not going here', 'take me home' - all very upsetting for me. It is now only a few weeks to our Hols and I am at my wits end of what to do. As Mum lives with us we really didn't want carers coming into our home while we were away.

All advice very welcome!
Skyelady

 

[Grannie G]

Hello Skyelady

Welcome to Talking Point.

I wish I had an answer for you and hope others will.

It`s not clear what stage your mother is at . If she attends a day centre she is used to being left and perhaps too early a warning and some discussion could be avoided.

Would she accept being told the doctor would like her to go for convalescence to help build up her strength?

 

[Kevinl]

Hi Skyelady, welcome to TP
Well, you can't make your mum go there and (in the UK) the home can't keep her there against her wishes without a Deprivation of Liberty Safeguarding order (DoLS) being in place, also if the home isn't secure then there may be a possibility she can get out and without a DoLS the staff don't have a legal right to stop her leaving is the bad news, now the home know her opinion will they still take her?
She must have some capacity to still be aware enough to know she doesn't like the place and judge the other residents to "look dead", I have the urge to take the pulse of some of the residents sometimes.
It may be that you have found somewhere local but is it suitable? I see people with some capacity place with those who don't and I know how upsetting it is for them and how it can lead to aggression when someone with advanced AZ gets "in the face" of someone who just wants to be left alone, it's not a good mix.
As Grannie G suggests a little "love lie" like the house needs repairing so she stays in one hotel and you stay in another while the boiler gets replaced or the roof gets fixed may work or as GG says blame the doctors for sending her there for convalescence. lying doesn't come naturally to many of us but I used to tell the children that when the ice cream van played the music it meant they'd run out of ice cream, needs must sometimes as they say.
K

 

[Katrine]

Have you considered a live-in respite carer? There are agencies that can provide this service.

 

[patsy56]

Hi Skye, welcome to TP, I read your post and feel for you. Last year my sister and I made the decision mum had to go in a home, she was falling and had become incontinent, but yes we still get "they all look dead in here', 'I am not going here', 'take me home' - yes it is very upsetting for everyone, but for my mum she can't go home we are selling.

 

[Shedrech]

hello Skyelady
a warm welcome to TP
I'm wondering whether your mum's reaction on visiting was just a knee jerk reaction? - maybe she'd picked up that you were a bit concerned/stressed and was partly reacting to that, partly to the thought of anything new, and partly to the anxiety of making a decision/choice?
is it possible for her to go into respite as her holiday, or a necessity as Kevinl suggests, with a 'love lie', AND go to her day care centre - though I can see potential problems with how she would be taken to the day care, and whether she would happily return to the 'hotel' for the evening and night
only you can know how much your mum understands of the situation; how much capacity she has - has she mentioned the visit? does she appear to remember it? - it may be that her reaction was upsetting for you, but for her the whole thing is done and dusted
I do agree with Grannie G that discussing this with her is probably counter-productive; will just confirm her feeling that something she dislikes is going to happen and so build up her resistance - and maybe it may be wise taking her to the home on the day as though you are going to her day care and leaving her with a smile as though nothing different were happening might allow her to just take it in her stride - of course, mention this to the staff so they are primed - homes who take in residents for respite are generally pretty good at dealing with the reactions of 'new' residents - have a chat with the care home manager?
I hope you find a way for the respite to work for you all
best wishes

 

[Skyelady]

Welcome to Talking Point.

I wish I had an answer for you and hope others will.

It`s not clear what stage your mother is at . If she attends a day centre she is used to being left and perhaps too early a warning and some discussion could be avoided.

Would she accept being told the doctor would like her to go for convalescence to help build up her strength?

Hi Sylvia

Thank you for your thoughts. I thought I was doing the right thing by letting her look around - I have learnt my lesson! She is, I suppose, early to mid-stage, where she can still get washed/dressed and make a cup of tea but that's about it. She is sometimes not interested in life but sometimes thoroughly enjoys activities 'in the moment' although she forgets what's she's done directly afterwards.

My daughter is a nurse and she has calmed me down this mining and said she is off ****s on the day Mum goes in so can help.

Regards
Skye

 

[Grannie G]

Good luck and enjoy your holiday Skyelady.

 

[Skyelady]

Hi Skyelady, welcome to TP
Well, you can't make your mum go there and (in the UK) the home can't keep her there against her wishes without a Deprivation of Liberty Safeguarding order (DoLS) being in place, also if the home isn't secure then there may be a possibility she can get out and without a DoLS the staff don't have a legal right to stop her leaving is the bad news, now the home know her opinion will they still take her?
She must have some capacity to still be aware enough to know she doesn't like the place and judge the other residents to "look dead", I have the urge to take the pulse of some of the residents sometimes.
It may be that you have found somewhere local but is it suitable? I see people with some capacity place with those who don't and I know how upsetting it is for them and how it can lead to aggression when someone with advanced AZ gets "in the face" of someone who just wants to be left alone, it's not a good mix.
As Grannie G suggests a little "love lie" like the house needs repairing so she stays in one hotel and you stay in another while the boiler gets replaced or the roof gets fixed may work or as GG says blame the doctors for sending her there for convalescence. lying doesn't come naturally to many of us but I used to tell the children that when the ice cream van played the music it meant they'd run out of ice cream, needs must sometimes as they say.
K

Thanks Kevin, we are just going to take her on the day and hope for the best but I will contact the care home tomorrow to let them know how she feels. I am sure this first respite time will be the worst and am hopeful it may get better the next time.

Regards
Skye

 

[Grannie G]

I used to tell the children that when the ice cream van played the music it meant they'd run out of ice cream, needs must sometimes as they say.
K

Now why didn`t I think of that.

 

[Skyelady]

Have you considered a live-in respite carer? There are agencies that can provide this service.

Hi Katrine

Thank you for your suggestion of live in respite care but when I have looked into this there would be a 'rota' of staff throughout the day and as Mum lives in our house, that's not really what we want to do. If I could find a lovely live-in companion for her that we could trust then I would definitely try that but sadly I'm not sure this sort of care is available.

Regards
Skye

 

[Skyelady]

Hi Skye, welcome to TP, I read your post and feel for you. Last year my sister and I made the decision mum had to go in a home, she was falling and had become incontinent, but yes we still get "they all look dead in here', 'I am not going here', 'take me home' - yes it is very upsetting for everyone, but for my mum she can't go home we are selling.

Hi Patsy

Thank you for responding and good luck with the house sale etc.

Regards
Skye

 

[Skyelady]

hello Skyelady
a warm welcome to TP
I'm wondering whether your mum's reaction on visiting was just a knee jerk reaction? - maybe she'd picked up that you were a bit concerned/stressed and was partly reacting to that, partly to the thought of anything new, and partly to the anxiety of making a decision/choice?
is it possible for her to go into respite as her holiday, or a necessity as Kevinl suggests, with a 'love lie', AND go to her day care centre - though I can see potential problems with how she would be taken to the day care, and whether she would happily return to the 'hotel' for the evening and night
only you can know how much your mum understands of the situation; how much capacity she has - has she mentioned the visit? does she appear to remember it? - it may be that her reaction was upsetting for you, but for her the whole thing is done and dusted
I do agree with Grannie G that discussing this with her is probably counter-productive; will just confirm her feeling that something she dislikes is going to happen and so build up her resistance - and maybe it may be wise taking her to the home on the day as though you are going to her day care and leaving her with a smile as though nothing different were happening might allow her to just take it in her stride - of course, mention this to the staff so they are primed - homes who take in residents for respite are generally pretty good at dealing with the reactions of 'new' residents - have a chat with the care home manager?
I hope you find a way for the respite to work for you all
best wishes

Hi, thank you very much for replying.

I agree we shouldn't speak beforehand and have just decided to take her on the day with crossed fingers and a big smile! I am going to call the care home tomorrow and let them know how Mum felt and that if she does get a bit stressed when she's there I am happy to pay for her to go to her normal day centre which isn't far. The best solution would have been that the care home attached to the day centre had a bed but no joy.

Regards
Angela

 

[Katrine]

Hi Katrine

Thank you for your suggestion of live in respite care but when I have looked into this there would be a 'rota' of staff throughout the day and as Mum lives in our house, that's not really what we want to do. If I could find a lovely live-in companion for her that we could trust then I would definitely try that but sadly I'm not sure this sort of care is available.

Regards
Skye

Yes you can book someone to stay for the whole time. That's what live-in means. The agency I use offers this service. PM me if you'd like a web link.