My mum refuses to go to any care homes we find for her. i am at the end of my tether

[Debbs3006]

I'm new to this site today and am getting to the end of my tether with my mum. She is 91 next month and was diagnosed with Alzheimers disease in April 2016, although to be fair she has had all the signs and symptoms for over a year now, its just taken us that long to get a diagnosis. She has lived alone for 31 years and always been independent. In the last 6 months she has struggled to cope and we have employed carers to help with some tasks. Physically although very frail, she can walk with a stick, wash herself and is continent so social services have not offered any care, we are paying for it all, predominantly carers every night to cook a meal and make sure she takes her warfarin, which she forgets to do or takes too many.
2 months ago she said she felt she couldn't cope anymore and wanted to go into a care home. Both my sisters live abroad so I spent several weeks visiting places, shortlisting some nice ones, which we then took her see when my sister visited 2 weeks ago. We found a lovely place that would have taken her for a respite week, and although she said she liked it when we visited, she flatly refused to go once we got home. We enrolled her for day care at another and again after 2 weeks she said she no longer wanted to go. We then found a very nice place near to where she lives, she went for day care and loved it. They have no beds at the moment so i have put her on the waiting list and she is going for day care twice a week. She has been 4 times and now decided she no longer wants to go there. This place is excellent and I know we won't find anywhere better. I was hoping to visit my son at university this weekend and they had said she could go for day care over the weekend to put my mind at rest, now it seems she won't go.

I work full time and she calls me several times a day, even from the care home on her mobile when she's there. One day last week I had 49 calls. She is completely deaf in one ear so calls are extremely difficult as she can not hear what i am saying, which results in both of us getting frustrated. I visit every weekend to take her out, do her medication, plus try to pop in 2 nights a week after work if I can, even though she lives 15 miles away.To be fair i have never had a good relationship with her, she has always been a difficult person, very"needy" critical of everything I do and demanding, but I am trying hard to help support her. However this is now beginning to make me feel ill and I just do not know where to turn. I am struggling to do my job properly because I never know when she will call, and I have told her not to call unless it is an emergency, but she don't remember. I remarried 3 years ago to a lovely man who is incredibly supportive, but my mums demands are starting to impact on our relationship. I was hopeful that if we could get her into a really nice care home, things would improve but I just can't see an end in sight. Her GP is frankly uninterested and we have no social worker as she would be self funding if she went into care. As both my sisters are abroad, most of the day to day care and organisation falls to me. My husband keeps worrying that I will end up becoming ill and to be honest I am starting to think he is right

I really don't have time to start looking for other homes, especially as she is adamant that she will only go to one in the area where she lives. Can i force her to carry on going to day care? If not what else can I do?

 

[marionq]

In such a difficult situation you mat be left with an only choice of stepping back until there is a crisis. It sounds horrible and may well be but often it is the only outcome. If she ends up in hospital she may have to go into a care home from there. Meanwhile when you are at work switch off your phone and only turn it on at lunch breaks etc.

 

[Debbs3006]

In such a difficult situation you mat be left with an only choice of stepping back until there is a crisis. It sounds horrible and may well be but often it is the only outcome. If she ends up in hospital she may have to go into a care home from there. Meanwhile when you are at work switch off your phone and only turn it on at lunch breaks etc.

Thanks marionq. I have started to turn off my phone at work occasionally. I think I just need to get over the guilt. What worries me is that she has a really lovely supportive neighbour and if she cant get hold of me she calls her. and I'm worried that she is getting fed up with mum too. It feels like we're just waiting for that crisis, which I wanted to avoid

 

[carrieboo]

I agree with marionq, this situation is not sustainable. You need to step back a bit, she has carers going in so you know she is being seen regularly. Stop the after work visits, switch your phone off at work, tell her you'll see her at the weekend and give yourself a break.

And try not to feel guilty (easier said than done I know)

I, too, have a needy mother that I've never really got on with & I've decided that I will do my duty but I will not make myself unwell.

 

[Debbs3006]

I agree with marionq, this situation is not sustainable. You need to step back a bit, she has carers going in so you know she is being seen regularly. Stop the after work visits, switch your phone off at work, tell her you'll see her at the weekend and give yourself a break.

And try not to feel guilty (easier said than done I know)

I, too, have a needy mother that I've never really got on with & I've decided that I will do my duty but I will not make myself unwell.

Thank you carrieboo. I think thats the key, not to feel guilty. Its almost like I want someone to give me permission to do that, if that makes sense?

 

[father ted]

Thank you carrieboo. I think thats the key, not to feel guilty. Its almost like I want someone to give me permission to do that, if that makes sense?

This resonated with me as my Mum is 90 and is able to get around indoors on a frame and washes and dresses herself so is quite capable in some ways. My situation is different as she lives with me but they sound similar (my Mum is very deaf but refuses to wear a hearing aid). Don't feel guilty. You are not abandoning her and you are being very proactive in finding somewhere suitable and putting plans in place so that you ALL have some quality of life. I only wish I could take my own advice in my situation but not easy. It's funny how we have clarity of vision when looking at someone else's circumstances!

 

[Shedrech]

Hi Debbs3006
just wondering - have you got Power of Attorney sorted out? - it will be very useful in the future should you reach the point where you feel your mum is unsafe and hasn't the capacity to make the decision over where she lives, so that you can move her

and keep her name on the waiting list for any care home you do like; you can let them know each time there's a place available that your mum isn't ready - and maybe one day she will surprise you and agree, and you will be able to move her quickly (then, if necessary, a few 'love lies' can be used should she begin to think of moving back

you are doing what you can for your mum, no more can be asked of you, so no need to feel guilty

 

[Amy in the US]

Hello, Debbs, and welcome to Talking Point. I am very sorry to hear about the stressful and difficult situation with your mother.

I will write a better response later, when I have more time, but didn't want to read and run. In the meantime, please know TP is always open and there are many kind people here who can offer understanding and sympathy, as well as share their experiences.

If I may ask, please, do you have PoA? And what support do you have for you? Any support groups or carers cafes in your area you might attend?

 

[Amy in the US]

This is copied from a post I wrote to someone else about phone calls:

Regarding the phone calls, well, many of us have been there, and I am one of them. One of the hardest things I had to learn to do was not to answer the phone every time my mother called. In my case, I was getting multiple phone calls and sometimes the late night phone calls (she saved the abuse for the answerphone/answering machine). I used to cry every time the phone rang. Mercifully, the phone calls have eased up and I no longer burst into tears every time the phone rings.

If you have a search here on TP you will find threads about phone calls. What we did that worked was:
-got caller ID so we knew when she was calling
-got voicemail to replace the answering machine, so I didn't have to listen to her message as she left it
-forced myself not to answer every call
-had my husband field some of the calls
-and I learned how to make the phone calls I did take shorter, or to disengage from them more

Some people get a dedicated mobile or landline number that they give only to the PWD (person with dementia) and record a message on it saying, Hi, Mum, I'm busy right now but I will call you soon, or something like that. Sometimes it helps the PWD just to hear your voice saying something reassuring.


And here is a thread that talks about phone calls, with links to other threads:

http://forum.alzheimers.org.uk/showthread.php?89569-Phone-Calls

 

[Debbs3006]

This resonated with me as my Mum is 90 and is able to get around indoors on a frame and washes and dresses herself so is quite capable in some ways. My situation is different as she lives with me but they sound similar (my Mum is very deaf but refuses to wear a hearing aid). Don't feel guilty. You are not abandoning her and you are being very proactive in finding somewhere suitable and putting plans in place so that you ALL have some quality of life. I only wish I could take my own advice in my situation but not easy. It's funny how we have clarity of vision when looking at someone else's circumstances!

Thank you for your reply. I agree that its easy to give rather than take advice! Thats always been my problem. I think I just need to be stronger for my own sake

 

[Debbs3006]

Hi Debbs3006
just wondering - have you got Power of Attorney sorted out? - it will be very useful in the future should you reach the point where you feel your mum is unsafe and hasn't the capacity to make the decision over where she lives, so that you can move her

and keep her name on the waiting list for any care home you do like; you can let them know each time there's a place available that your mum isn't ready - and maybe one day she will surprise you and agree, and you will be able to move her quickly (then, if necessary, a few 'love lies' can be used should she begin to think of moving back

you are doing what you can for your mum, no more can be asked of you, so no need to feel guilty

Hi, yes we have thankfully. I'm going to try and keep her going to the care home for day care if possible. She needs to accept that it will be different but hopefully it will get better. Its so good to have so many people telling me not to feel guilty!

 

[Debbs3006]

This is copied from a post I wrote to someone else about phone calls:

Regarding the phone calls, well, many of us have been there, and I am one of them. One of the hardest things I had to learn to do was not to answer the phone every time my mother called. In my case, I was getting multiple phone calls and sometimes the late night phone calls (she saved the abuse for the answerphone/answering machine). I used to cry every time the phone rang. Mercifully, the phone calls have eased up and I no longer burst into tears every time the phone rings.

If you have a search here on TP you will find threads about phone calls. What we did that worked was:
-got caller ID so we knew when she was calling
-got voicemail to replace the answering machine, so I didn't have to listen to her message as she left it
-forced myself not to answer every call
-had my husband field some of the calls
-and I learned how to make the phone calls I did take shorter, or to disengage from them more

Some people get a dedicated mobile or landline number that they give only to the PWD (person with dementia) and record a message on it saying, Hi, Mum, I'm busy right now but I will call you soon, or something like that. Sometimes it helps the PWD just to hear your voice saying something reassuring.


And here is a thread that talks about phone calls, with links to other threads:



Thats really helpful Amy thank you. I've ignored 15 calls tonight, basically because I'm a but under the weather myself and have found myself near to tears too every time the phone has rung. It feels so hard but has to be done for my own sanity. She's leaving the same message each time, that she needs my sisters mobile number, which she has! I am thinking about getting a different number which I could record a message on just for her, so thanks for clarifying that and for the link. We do have power of attorney thanks.