Exhausted

Jakesterblack

Registered User
May 20, 2022
75
0
Hi, mum was diagnosed with Alzheimers last July, she is progressively getting worse in many ways. I work full time Monday to Friday and my sister has had to give up work due to illness. We do what we can for mum BUT she will not accept help either in form of a cleaner or carer. We are there every single day/night and are both mentally and physically exhausted. All she keeps saying is that as long as she has the two of us she will be fine obviously not realising the strain she is putting us under and also not realising how ill my sister is. I just don't know what to do any more and actually dread going to visit now.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,771
0
Kent
I would make myself less available @Jakesterblack As long as you are there your mother will expect more.

I know it sounds harsh but the next time she says as long as she has the two of you why not say you’ve booked a holiday or have to work overtime or anything else you can think of.

I used to check on my mother before and after work and at the weekend. I did her shopping and took her washing to the laundrette and that was more than enough.
 

Violet Jane

Registered User
Aug 23, 2021
2,038
0
Have you tried carers and a cleaner or just asked her whether she wants them? If you ask a PWD whether s/he will agree to carers / a cleaner / day care / respite they will invariably say ‘no’. You just have to arrange it without asking permission first. Start with a cleaner and tell her something which will be palatable e.g. all older middle class women have cleaners now.

As @Grannie G says, if you and your sister are there constantly she won’t accept outside help and will want you to be there more and more.

You and your sister deserve a life of your own. If your mother won’t accept paid help and she can’t manage without help then you need to contact Social Services and say that you are stepping back and they need to step in as she is a vulnerable adult. Make it clear that you can’t go on providing the same level of support and definitely can’t do any more.
 

Jakesterblack

Registered User
May 20, 2022
75
0
I would make myself less available @Jakesterblack As long as you are there your mother will expect more.

I know it sounds harsh but the next time she says as long as she has the two of you why not say you’ve booked a holiday or have to work overtime or anything else you can think of.

I used to check on my mother before and after work and at the weekend. I did her shopping and took her washing to the laundrette and that was more than enough.
Hi, ye thing is i can say all that but she forgets. I had a really bad day with her yesterday, she had one of her episodes as we now call it pulling her fair panicking and just all over the place. I just don't know how to deal with her and i'm back and work today and worried sick. I spoke to my sister last night and said to her i think we have to enforce carer on her and tell her this is what is happening as we can't maintain this - she isn't going to get any better it's just going to get worse and we can't keep this up
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,771
0
Kent
It might be time to consider residential care @Jakesterblack

Whatever care you get at home there will still be times when your mother is alone and you are worrying yourself sick about her.

At least in residential care, she will have people with her 24/7 and you can still share responsibility while working in peace and having a bit of life for yourself.
 

Jakesterblack

Registered User
May 20, 2022
75
0
Have you tried carers and a cleaner or just asked her whether she wants them? If you ask a PWD whether s/he will agree to carers / a cleaner / day care / respite they will invariably say ‘no’. You just have to arrange it without asking permission first. Start with a cleaner and tell her something which will be palatable e.g. all older middle class women have cleaners now.

As @Grannie G says, if you and your sister are there constantly she won’t accept outside help and will want you to be there more and more.

You and your sister deserve a life of your own. If your mother won’t accept paid help and she can’t manage without help then you need to contact Social Services and say that you are stepping back and they need to step in as she is a vulnerable adult. Make it clear that you can’t go on providing the same level of support and definitely can’t do any more.
 

Jakesterblack

Registered User
May 20, 2022
75
0
Hi, thank you for your replies. Our contact from Alzheimers Scotland had a meeting yesterday with mum, myself and sister and my daughter, mum was not happy, said a lot of hurtful things and is refusing care so I am now going to have to enforce it. The whole meeting was awful and we were in tears as we are at breaking point, I know she isn't my mum anymore and doesn't mean the things she is saying but I feel awful about the whole thing so does my sister.
 

margherita

Registered User
May 30, 2017
3,280
0
Italy, Milan and Acqui Terme
Hi @Jakesterblack ,
Grannie G's advice doesn't sound harsh to me, but wise. Your being available makes your mum more and more demanding.
In my personal opinion, PWDs have an unconscious and natural ability into manipulating their loved ones into doing what they want.
Instead, as they always say here on TP, we should try to do what they need, not what they want since they're unable to make good decisions about their lives and the way they should be cared for.
 

Jakesterblack

Registered User
May 20, 2022
75
0
Hi @Jakesterblack ,
Grannie G's advice doesn't sound harsh to me, but wise. Your being available makes your mum more and more demanding.
In my personal opinion, PWDs have an unconscious and natural ability into manipulating their loved ones into doing what they want.
Instead, as they always say here on TP, we should try to do what they need, not what they want since they're unable to make good decisions about their lives and the way they should be cared for.
Hi, Ye i have got to that point with mum but i just feel awful that it's came to this stage and having to force care on her I know it's the best for all of us I just can't help but feel guilty ...
 

Violet Jane

Registered User
Aug 23, 2021
2,038
0
I'm not sure that it was a good idea to involve your Mum in this discussion. She lacks insight and empathy and can't understand why you want to bring carers in.

I'm afraid that nothing will change unless you and your sister make changes. Your Mum will become more and more demanding until eventually she will want one of you with her and attending to her all day and all night.

It's very sad that your Mum has dementia but there's no point in letting it ruin three lives.
 

canary

Registered User
Feb 25, 2014
25,059
0
South coast
Hi, Ye i have got to that point with mum but i just feel awful that it's came to this stage and having to force care on her I know it's the best for all of us I just can't help but feel guilty ...
I know. What we would like to do is to talk the situation over with them and come to an agreement, but dementia takes that away. If you carry on with what she wants then both you and your sister will become ill (and carers are 30% more likely to die than non-carers) and what will become of your mum then? I faced a similar choice with my mum. We have ultimately only two choices, to leave them and watch them deteriorate into self neglect, or enforce care they need, but do not understand that they need it. Both choices will involve guilt, but Id rather take the guilt of knowing that I had done what was best, even if she didnt want it, than the guilt of knowing that I could have made things better for her and didnt.
 

Jakesterblack

Registered User
May 20, 2022
75
0
I'm not sure that it was a good idea to involve your Mum in this discussion. She lacks insight and empathy and can't understand why you want to bring carers in.

I'm afraid that nothing will change unless you and your sister make changes. Your Mum will become more and more demanding until eventually she will want one of you with her and attending to her all day and all night.

It's very sad that your Mum has dementia but there's no point in letting it ruin three lives.
Hi, We had to involve her in this conversation to see if she would agree to carer coming in. Unfortunately she won't which now means as POA i have to make that decision. I do understand what you are saying about making changes and we have definitely got to the end of the line and have to do it now for our own health and sanity. Thank you for you're reply x
 

Jakesterblack

Registered User
May 20, 2022
75
0
I know. What we would like to do is to talk the situation over with them and come to an agreement, but dementia takes that away. If you carry on with what she wants then both you and your sister will become ill (and carers are 30% more likely to die than non-carers) and what will become of your mum then? I faced a similar choice with my mum. We have ultimately only two choices, to leave them and watch them deteriorate into self neglect, or enforce care they need, but do not understand that they need it. Both choices will involve guilt, but Id rather take the guilt of knowing that I had done what was best, even if she didnt want it, than the guilt of knowing that I could have made things better for her and didnt.
Thankyou for your reply, yep i'm hoping that the guilt will go eventually think it's all just a bit raw after yesterday tbh. x
 

Pineapple16

New member
Jun 8, 2023
4
0
It might be time to consider residential care @Jakesterblack

Whatever care you get at home there will still be times when your mother is alone and you are worrying yourself sick about her.

At least in residential care, she will have people with her 24/7 and you can still share responsibility while working in peace and having a bit of life for yourself.
 

Pineapple16

New member
Jun 8, 2023
4
0
I agree, my brother is in his early forties and lives with my mum, however he works full time, 3 days at home where she’s constantly knocking on his door asking where her car is(scrapped last year). On the 2 days he goes in to the office, she is constantly calling him. He takes the brunt of all her aggressiveness as I live 230 miles away. She is now trying to wander off during sundown, and he can’t keep guarding the doors, and just this week, he had a call from her at 1.45am. Half asleep, he asked what she was doing, only to find her outside the house on the driveway. There’s only so much he can take.
 

SAP

Registered User
Feb 18, 2017
1,338
0
Hi @Pineapple16 , your brother can have a door alarm fitted by the council ( telecare or care call) that will set of a hand held alarm when then front door is opened. That was he knows she is on her way out and can take action with out having to constantly watch the doors.
 

canary

Registered User
Feb 25, 2014
25,059
0
South coast
Hello @Pineapple16

I have a friend who lives with his mum and has come up with a novel solution to her going out at night. People with dementia often see black things as a hole, so he has taped a black bin bag to the floor. During the day it is covered by a large mat and then at night he takes the mat away to uncover it. She sees it as a hole in the floor and doesnt go near it.

I have never come across this solution before and I dont know how well it would work generally, but its a cheap solution and maybe worth trying out.
 

Jakesterblack

Registered User
May 20, 2022
75
0
I agree, my brother is in his early forties and lives with my mum, however he works full time, 3 days at home where she’s constantly knocking on his door asking where her car is(scrapped last year). On the 2 days he goes in to the office, she is constantly calling him. He takes the brunt of all her aggressiveness as I live 230 miles away. She is now trying to wander off during sundown, and he can’t keep guarding the doors, and just this week, he had a call from her at 1.45am. Half asleep, he asked what she was doing, only to find her outside the house on the driveway. There’s only so much he can take.
My mum has basically stopped talking to me and my sister, we were down as usual Sat/Sunday and she has obviously retained a bit of the conversation from last week as she shouted at me saying she isn't dirty and her house isn't and she goes every week and does her own shopping.. which she doesn't and she is forgetting to shower and doesn't clean her house and won't allow a cleaner in.. and i've stopped doing it now as I just can't maintain it along with working full time and looking after my own family/house... i don't even try to explain or argue any more there is no point and i can feel my stress levels rise each visit... she shouted nobody is getting in and shut the door in my face.. i just left there is only so much i can do. My sister then got it on Sunday and she was really upset.... i have to take mum to the GP tonight (which i know she will refuse to go) for the GP to sign a letter to say that she is incapable of making these decisions and once I send this to the lawyer i can then enforce care.. I feel like this is the end of our relationship and it will just go downhill from here and it's sad... she isn't my mum anymore and as you will all know it's hard to accept
 

canary

Registered User
Feb 25, 2014
25,059
0
South coast
((((((((((((((((((((((((hugs))))))))))))))))))) @Jakesterblack

It may not be the end of your relationship.

What you are experiencing now is very similar to the problems I had with my mum. She was at exactly the same stage as your mum - still living on her own and thinking she was doing everything - showering, housework, laundry, shopping and cooking - when in reality she was doing none of it. She too was very angry with me and wouldnt let me over her doorstep. Yes, she often shut the door in my face. She also accused me of stealing from her, shouting at her and hitting her, whereas, in reality, she was the one doing the shouting! Social Services did nothing because she refused carers. I tried to get some in, but mum wouldnt let them in her house either. By this stage I was pulling my hair out with worry.

Eventually she had a TIA and ended up in hospital. From there she went to a care home and stayed there up to the end. It took her a couple of months to settle (she was constantly "packing to go home"), but she did settle and then she thrived. Her old personality returned (though not her memory), I became her daughter again (although she often got muddled as to the exact relationship) and her face would light up every time she saw me. She became a whole lot of fun again and I was able to take her on trips out to a cafe or garden centre.

This stage wont go on for ever, although it might take a crisis for it to change
xx