Carer for Mum, Alzheimer's (early stage) diagnosis.

[TNJJ]

Been a while since posting on here...

Don't know where to start. Mum went out one evening - Dad saw her put on her coat, then must have dozed, brother upstairs also asleep. When he came down a few hours later, no sign of her anywhere, hadn't taken phone as usual. Texted me and sibling. And other family members to search for her. He rang police as she is classed as vulnerable adult. All the right thing to do.

The disturbing thing was, when I went around to parents, brother found it difficult to stop smiling about it - supposedly he was stressed and concerned for her, but he couldn't conceal his delight totally that we had to call police.

I looked all over the place in the car for nearly 45 minutes, and, fortunately found her after thinking 'What place could possibly still be open she could walk to?' I persuaded her into my car, then had hell of a job calming her down. She really sobbed her heart out and spoke about 'Why was she here?' that her son thought she was incapable, that she had sat next to her sister's grave wishing it was her in there. And utterly refused to go home because brother was there.

It transpired that he had again shouted at her, something he omitted to mention, so she had walked out. That's a totally different thing to mindless dementia wandering. She finally agreed to stay with me overnight. However when I contacted Dad, he wouldn't hear of it... reluctantly she went home.

Then at the weekend in front of family visitors, he dropped into the conversation that Mum had done this 3 times, with only one call to police and this meant that after 3 or 4 calls the police would 'expect something to be done about her'...

I felt shocked and couldn't speak. It worried me hugely that, as I was advocating for her to stay in her own home (which is what she and Dad have always said they wanted) because she is early stages and mostly able to converse and recognise us, still able to function e.g. do chores, he is now finding a way to ensure she is put in a CH... I have been stressing out and having nightmares to the point of burn out...

He even called to claim a few days after the first callout that she had done the same thing again. I had to point out that Mum had called & spoken to her and Dad, and she told me she was going out (and where), he quickly rang off the phone with an excuse.

I have contacted several professionals about what is happening, so, it is recorded that she wasn't aimlessly wandering but avoiding a stressful situation in her own home. I shouldn't have to do this....

One of these was going to try and contact Mum too, although I said it might not work because of her deafness, however the last few days she seems a lot happier and has spoken to me that she knows she has rights. So I am hoping they have contacted her and she knows that she isn't struggling with this alone - with just me trying to help.

She also mentioned that both her and Dad had thought about leaving their home to my brother as he hasn't got anything. I was surprised at first, then I realise their thinking was that myself and other sibling do have our own places (no mortgages either) so secure. That brother has been through terrible things and no security or stability, and it would give them peace of mind to do this... Yet I have the underlying feeling that when poor Dad passes (as he is sadly likely to do in the near future) he will still do his utmost to oust Mum out of her home...

She again referred to the amount of empty cans of cider in the recycling... I feel well, helpless, depressed, stressed, burnt out and don't know which way to turn.

This is terrible but unfortunately not surprising! Your mother has rights and I would suggest maybe CAB and AGE U.K. Also giving the dementia helpline a ring.( Sorry no good at links) Do you have LPOA for your mum? If not I would try and get it done as this would help in the future ..
If your mum wants to stay with you overnight it shouldn’t have been a problem. Your mum has enough capacity by the sound of it to make a decision. You both sound very worn out with the bullying going on.
I don’t know what to suggest other than take a step back for a few days. Does your mum have a mobile that she can use? If she walks out again at least she could contact you.

 

[Fluff bucket]

This is terrible but unfortunately not surprising! Your mother has rights and I would suggest maybe CAB and AGE U.K. Also giving the dementia helpline a ring.( Sorry no good at links) Do you have LPOA for your mum? If not I would try and get it done as this would help in the future ..
If your mum wants to stay with you overnight it shouldn’t have been a problem. Your mum has enough capacity by the sound of it to make a decision. You both sound very worn out with the bullying going on.
I don’t know what to suggest other than take a step back for a few days. Does your mum have a mobile that she can use? If she walks out again at least she could contact you.

@TNJJ

I have contacted dementia support services, and another professional body, and I think its the Dementia contact which may have spoken to Mum. However, there is the time lag between asking and getting help.... I should contact the helpline too...

Both parents have nominated me as LPOA for all aspects, although I think they should have nominated another sibling too, so I could have shared the responsibility. However the other 2 siblings are back up LPOA's. This is being registered at OPG although we were told it would be longer than 8-12 weeks (pre-Covid) to get this done. 12 weeks would be end of September...

Mum really wanted to stay with me, however, Dad piled on the pressure that he needed her. Mum refuted this as brother was there, Dad wouldn't take no for an answer, so reluctantly she went back. Dad is asleep a lot of the time, brother has moved his painkiller (morphine based) into the cupboard where he takes his other meds, and as Dad is out of it during the day for hours, I now worry that he may be relying too much on that particular pain med - going to contact GP about dosages again...

I keep stressing to Mum about taking her phone - its only an old basic one without internet connection, saying that if Dad takes a bad turn she would want to be contacted. Or at least to tell me if she goes out via landline - this would pre-empt any unneeded police call, or, even better call me and I would drive her wherever she wants. Sadly she often says she needs to be on her own, treasuring her independence, which I understand as she (I think) realises she may lose this soon. What she describes sounds like unrelenting pressure - I can appreciate her needing alone time. Sometimes she does decide she wants my company though, and I feel so relieved.

The worse thing is the feeling helpless. I can't do anything to stop the progression of her disease/deterioration, or, Dad's worsening decline. They both refuse outside help (I have tried again), Dad especially is dependent on brother - they do dote on each other. I couldn't see them parted, it would break Dad's heart, and then they would both worry again about him and his safety too... this is a living hell....

 

[Sarasa]

Hi @Fluffbucket I am sorry thing continue to be difficult for your family.
It's a worry about your mum going out and not telling people where she is going. I know you think your mum is in the early stages, but from what I've said it sounds a bit more like mid-stages to me. I saw my mum a couple of times a week and she would seem fairly together most of the time I was with her. It was only later I realised how confused she must have been at times when I wasn't there.
Mum never wandered and got lost, but she got to what I think is the stage before that, which sounds very similar to what your mum is doing. I lived an hour and a half away so would phone to remind her I was on my way. In the last couple of months she was at home I would get there and she wasn't in. I then had to walk up and down her high street looking for her in her usual haunts. She was usually in the Marks and Spencer café and would explain why she wasn't at home as due to her thinking I'd changed my mind or some other vague excuse. Mum also took it into her head to go drinking in the local pub with random strangers as she just wanted some company and a glass of wine. It sounds like your mum doesn't think through whether it is sensible to go out, and that she should let the family know before she does it.
It's a shame you couldn't have her to stay with you for a day or two. Not only would it help your brother, who must be very stressed by it all, it would help you see exactly how your mum is over an extended period of time.
As others have said calling the Dementia Support Line would be a good idea. You can contact them on0333 150 3456 or email dementia.connect@alzheimers.org.uk

 

[TNJJ]

@TNJJ

I have contacted dementia support services, and another professional body, and I think its the Dementia contact which may have spoken to Mum. However, there is the time lag between asking and getting help.... I should contact the helpline too...

Both parents have nominated me as LPOA for all aspects, although I think they should have nominated another sibling too, so I could have shared the responsibility. However the other 2 siblings are back up LPOA's. This is being registered at OPG although we were told it would be longer than 8-12 weeks (pre-Covid) to get this done. 12 weeks would be end of September...

Mum really wanted to stay with me, however, Dad piled on the pressure that he needed her. Mum refuted this as brother was there, Dad wouldn't take no for an answer, so reluctantly she went back. Dad is asleep a lot of the time, brother has moved his painkiller (morphine based) into the cupboard where he takes his other meds, and as Dad is out of it during the day for hours, I now worry that he may be relying too much on that particular pain med - going to contact GP about dosages again...

I keep stressing to Mum about taking her phone - its only an old basic one without internet connection, saying that if Dad takes a bad turn she would want to be contacted. Or at least to tell me if she goes out via landline - this would pre-empt any unneeded police call, or, even better call me and I would drive her wherever she wants. Sadly she often says she needs to be on her own, treasuring her independence, which I understand as she (I think) realises she may lose this soon. What she describes sounds like unrelenting pressure - I can appreciate her needing alone time. Sometimes she does decide she wants my company though, and I feel so relieved.

The worse thing is the feeling helpless. I can't do anything to stop the progression of her disease/deterioration, or, Dad's worsening decline. They both refuse outside help (I have tried again), Dad especially is dependent on brother - they do dote on each other. I couldn't see them parted, it would break Dad's heart, and then they would both worry again about him and his safety too... this is a living hell....

I can understand that it is a living hell. There is only so much one person can do.Can you email the GP with your concerns of your mum etc? I’m sorry I cannot offer more advice or knowledge. Would your mum go to a day care centre to meet other people if open?

 

[jennifer1967]

can i ask, if your mum went into care and your dad passed away, would your brother benefit by living in the house or would it have to be sold to meet care costs?

 

[silkiest]

Been a while since posting on here...

Don't know where to start. Mum went out one evening - Dad saw her put on her coat, then must have dozed, brother upstairs also asleep. When he came down a few hours later, no sign of her anywhere, hadn't taken phone as usual. Texted me and sibling. And other family members to search for her. He rang police as she is classed as vulnerable adult. All the right thing to do.

The disturbing thing was, when I went around to parents, brother found it difficult to stop smiling about it - supposedly he was stressed and concerned for her, but he couldn't conceal his delight totally that we had to call police.

I looked all over the place in the car for nearly 45 minutes, and, fortunately found her after thinking 'What place could possibly still be open she could walk to?' I persuaded her into my car, then had hell of a job calming her down. She really sobbed her heart out and spoke about 'Why was she here?' that her son thought she was incapable, that she had sat next to her sister's grave wishing it was her in there. And utterly refused to go home because brother was there.

It transpired that he had again shouted at her, something he omitted to mention, so she had walked out. That's a totally different thing to mindless dementia wandering. She finally agreed to stay with me overnight. However when I contacted Dad, he wouldn't hear of it... reluctantly she went home.

Then at the weekend in front of family visitors, he dropped into the conversation that Mum had done this 3 times, with only one call to police and this meant that after 3 or 4 calls the police would 'expect something to be done about her'...

I felt shocked and couldn't speak. It worried me hugely that, as I was advocating for her to stay in her own home (which is what she and Dad have always said they wanted) because she is early stages and mostly able to converse and recognise us, still able to function e.g. do chores, he is now finding a way to ensure she is put in a CH... I have been stressing out and having nightmares to the point of burn out...

He even called to claim a few days after the first callout that she had done the same thing again. I had to point out that Mum had called & spoken to her and Dad, and she told me she was going out (and where), he quickly rang off the phone with an excuse.

I have contacted several professionals about what is happening, so, it is recorded that she wasn't aimlessly wandering but avoiding a stressful situation in her own home. I shouldn't have to do this....

One of these was going to try and contact Mum too, although I said it might not work because of her deafness, however the last few days she seems a lot happier and has spoken to me that she knows she has rights. So I am hoping they have contacted her and she knows that she isn't struggling with this alone - with just me trying to help.

She also mentioned that both her and Dad had thought about leaving their home to my brother as he hasn't got anything. I was surprised at first, then I realise their thinking was that myself and other sibling do have our own places (no mortgages either) so secure. That brother has been through terrible things and no security or stability, and it would give them peace of mind to do this... Yet I have the underlying feeling that when poor Dad passes (as he is sadly likely to do in the near future) he will still do his utmost to oust Mum out of her home...

She again referred to the amount of empty cans of cider in the recycling... I feel well, helpless, depressed, stressed, burnt out and don't know which way to turn.

Hi @fluffbucket, it may not be possible for your parents to change their will. 2-3 years ago MIL's solicitor would not substantially alter her will as he felt she did not have capacity to fully understand the implications, he would only add a minor codicil. If you feel that your brother has had a hand in encouraging your parents to change their wills this is financial abuse and should be reported to social services.

 

[Jaded'n'faded]

The trouble is, your dear brother is completely untrustworthy. You know that he lies because you've caught him umpteen times. You know he has ulterior motives but it's not entirely clear what, though it's becoming increasingly clear that he's definitely up to something!

Worst case scenario: he's keeping your father out of it with the morphine for much of the day so your dad doesn't actually have a clue what's happening for most of the time. As soon as you leave it seems he's starting on your poor mum. God knows what he says to her but it's clearly very upsetting. He shouts at her and scolds her, tells her she should be in a care home. That is abuse. Then there's the business of changing the will. I don't think for one moment your mother or father came up with this idea themselves, so that suggests brother has come up with it and suggested it to them. I'm sure he's capable of being very charming (or very threatening) when he needs to and has possibly given them his sob story about how comfortable the rest of you are (i.e. and don't need money from the parental estate) and how he has nothing and will probably be homeless in the near future... Emotional blackmail is a powerful thing.

Obviously I don't know what is actually going on but I'd be very concerned. Your brother seems determined to have your mother forcibly removed to a care home so he doesn't have to bother with her. My concern is that he is actually neglecting her by purposely letting her out or worse, by upsetting her so much she leaves in fear. This seems deliberate.

I don't know what you should or can do right now, other than keep a very very close eye on things. You seem to think your father doesn't have long to live so I wonder what will happen then? As brother's role seems to be to care for your dad and he clearly doesn't want to care for your mum, he really ought to move out at that point. Then you could get proper carers in for your mum, maybe get her into daycare a few days a week so she gets out and meets people. But I think he's pre-empting this by moving all his stuff in and trying to get your mother into a CH. If he was still there after your father dies you'd have to evict him which would be unpleasant for everyone.

 

[Fluff bucket]

Hi @Fluffbucket I am sorry thing continue to be difficult for your family.
It's a worry about your mum going out and not telling people where she is going. I know you think your mum is in the early stages, but from what I've said it sounds a bit more like mid-stages to me. I saw my mum a couple of times a week and she would seem fairly together most of the time I was with her. It was only later I realised how confused she must have been at times when I wasn't there.
Mum never wandered and got lost, but she got to what I think is the stage before that, which sounds very similar to what your mum is doing. I lived an hour and a half away so would phone to remind her I was on my way. In the last couple of months she was at home I would get there and she wasn't in. I then had to walk up and down her high street looking for her in her usual haunts. She was usually in the Marks and Spencer café and would explain why she wasn't at home as due to her thinking I'd changed my mind or some other vague excuse. Mum also took it into her head to go drinking in the local pub with random strangers as she just wanted some company and a glass of wine. It sounds like your mum doesn't think through whether it is sensible to go out, and that she should let the family know before she does it.
It's a shame you couldn't have her to stay with you for a day or two. Not only would it help your brother, who must be very stressed by it all, it would help you see exactly how your mum is over an extended period of time.
As others have said calling the Dementia Support Line would be a good idea. You can contact them on0333 150 3456 or email dementia.connect@alzheimers.org.uk

@Sarasa

This is the concern, that it is worse than she is making out, and that she might simply not remember 'not remembering'. I have arranged a GP appt at her request, then she went out, but thankfully back in time for it.

I think I will spend the day with her when Dad is in his day session to see how she does.

Going to ring them thank you (been on counselling myself this morning) very tired....

 

[Fluff bucket]

I can understand that it is a living hell. There is only so much one person can do.Can you email the GP with your concerns of your mum etc? I’m sorry I cannot offer more advice or knowledge. Would your mum go to a day care centre to meet other people if open?

@TNJJ
I am going to GP for myself, as much as mum, sadly Mum dismisses any talk of day care etc as reflecting on her lack of capability.

 

[Fluff bucket]

can i ask, if your mum went into care and your dad passed away, would your brother benefit by living in the house or would it have to be sold to meet care costs?

@jennifer1967

My parents have savings so that could self fund her for a year or so (not sure of costs of a care home), but, I don't know if eventually their home might have to be sold for care anyway?

 

[Fluff bucket]

Hi @fluffbucket, it may not be possible for your parents to change their will. 2-3 years ago MIL's solicitor would not substantially alter her will as he felt she did not have capacity to fully understand the implications, he would only add a minor codicil. If you feel that your brother has had a hand in encouraging your parents to change their wills this is financial abuse and should be reported to social services.

@silkiest

They had reviewed their wills recently, but, not in brother's favour - for it to be divided between us 3 siblings. I simply feel this is more a wish as I thought their savings etc would be for their care any way. It's only the last few days Mum has mentioned this...

 

[Fluff bucket]

The trouble is, your dear brother is completely untrustworthy. You know that he lies because you've caught him umpteen times. You know he has ulterior motives but it's not entirely clear what, though it's becoming increasingly clear that he's definitely up to something!

Worst case scenario: he's keeping your father out of it with the morphine for much of the day so your dad doesn't actually have a clue what's happening for most of the time. As soon as you leave it seems he's starting on your poor mum. God knows what he says to her but it's clearly very upsetting. He shouts at her and scolds her, tells her she should be in a care home. That is abuse. Then there's the business of changing the will. I don't think for one moment your mother or father came up with this idea themselves, so that suggests brother has come up with it and suggested it to them. I'm sure he's capable of being very charming (or very threatening) when he needs to and has possibly given them his sob story about how comfortable the rest of you are (i.e. and don't need money from the parental estate) and how he has nothing and will probably be homeless in the near future... Emotional blackmail is a powerful thing.

Obviously I don't know what is actually going on but I'd be very concerned. Your brother seems determined to have your mother forcibly removed to a care home so he doesn't have to bother with her. My concern is that he is actually neglecting her by purposely letting her out or worse, by upsetting her so much she leaves in fear. This seems deliberate.

I don't know what you should or can do right now, other than keep a very very close eye on things. You seem to think your father doesn't have long to live so I wonder what will happen then? As brother's role seems to be to care for your dad and he clearly doesn't want to care for your mum, he really ought to move out at that point. Then you could get proper carers in for your mum, maybe get her into daycare a few days a week so she gets out and meets people. But I think he's pre-empting this by moving all his stuff in and trying to get your mother into a CH. If he was still there after your father dies you'd have to evict him which would be unpleasant for everyone.

You are posting what I am trying not to think.... : (

Definitely need to be there more, had counselling myself today as I feel at breaking point. Just got a text from brother declaring Mum AWOL since 10am and he's found ready meals binned after she's told him she's eaten... he says that he is worried she isn't eating 'just so you know'....

: ( And of course, no phone with her. Time to go mum searching again... : (

 

[Shedrech]

hi @Fluff bucket
payment for care fees comes only from your mum's income and savings plus half any shared savings (your father's finances are not taken into account; he does not fund her care) ... as long as one spouse (or both) lives in the property it is disregarded in any financial assessment

should your dad die and your mum be in or move into residential care, then the house is her assest and is included so may have to be sold ... or look into an deferred arrangement with the LA

Paying for dementia care in England

Dementia care isn't free, and you may need to pay for some of the care you or someone you know needs. We help you understand the different ways to pay for care, and the amount you might be expected to pay.

www.alzheimers.org.uk

hope you find your mum soon ... if you can, maybe take her to your home and have her stay the night for a break with NO discussion with husband/brother .... her welfare and wishes are just as important as theirs

 

[Sarasa]

Have you registered your mother as a vulnerable person with the police, @Fluff bucket. The Herbert Protocol is there to help in the sort of situation you are facing at present.
I agree with @Shedrech , when you find your mother take her back to your place for a day or two. That way your brother gets a break from trying to look after her as well as your dad, and you can assess how she really is, not how she says she is.
As for the whole situation with your brother. is there anyway the two of you can sit down and talk things out without any input from either of your parents.

 

[Jaded'n'faded]

Hope you find her soon. Thinking of you and angry at your brother. Why is he texting you 2 hours after your mum went 'missing'? Why wasn't he out looking for her after 10 minutes like anyone else would be?

And why is he finding dumped meals? Does he just leave her to eat alone? Does he not see what she eats? Surely if was keeping even the slightest watch over her this couldn't happen.

 

[Starting on a journey]

Hi @Fluff bucket hoping that your mum is safe and well

 

[lemonbalm]

I'm sorry things are so very difficult @Fluff bucket . You have so many issues to deal with, you must be worried sick. I've been catching up with your story in horror and I'm seething on your behalf. I hope you find your mum soon (hoping you already have done) and that she is ok.

I must admit that, if it were me, I would pack mum some clothes and have her to stay for a short while. It's not a long term solution but would give everyone a bit of breathing space and your brother does appear to care for your Dad.
Perhaps if your brother tells your Dad that is what is happening, he may be more open to the idea. It will give you chance to have proper time with your mum and feed her up a bit (it's possible she may think your brother is trying to poison her if she is throwing food away).

Do you think your mum will feel more secure with you and can you manage it?

We're all thinking of you.

 

[lollyc]

I don't do tech, but I know several people on here have set up cameras to keep an eye on their parent. Perhaps you could do something like this. Surely your brother can't object to that - if your Mum is genuinely doing all these things of course....

 

[Fluff bucket]

hi @Fluff bucket
payment for care fees comes only from your mum's income and savings plus half any shared savings (your father's finances are not taken into account; he does not fund her care) ... as long as one spouse (or both) lives in the property it is disregarded in any financial assessment

should your dad die and your mum be in or move into residential care, then the house is her assest and is included so may have to be sold ... or look into an deferred arrangement with the LA

Paying for dementia care in England

Dementia care isn't free, and you may need to pay for some of the care you or someone you know needs. We help you understand the different ways to pay for care, and the amount you might be expected to pay.

www.alzheimers.org.uk

hope you find your mum soon ... if you can, maybe take her to your home and have her stay the night for a break with NO discussion with husband/brother .... her welfare and wishes are just as important as theirs

@Shedrech

Thank you. Just as I was about to get in the car he texted she was back. Then had to go round there to try and see what was happening, then out with her all day today, really exhausted. Sorry to worry anyone, she is at her home and safe, just so tired never even switched my computer on....

That's useful to know about future funding thank you.

Mum refuses to stay here now after what Dad said to her about needing her....

 

[Fluff bucket]

Have you registered your mother as a vulnerable person with the police, @Fluff bucket. The Herbert Protocol is there to help in the sort of situation you are facing at present.
I agree with @Shedrech , when you find your mother take her back to your place for a day or two. That way your brother gets a break from trying to look after her as well as your dad, and you can assess how she really is, not how she says she is.
As for the whole situation with your brother. is there anyway the two of you can sit down and talk things out without any input from either of your parents.

@Sarasa

No - I will look into this thank you Sarasa. Had not heard of the Herbert Protocol before. The snag is, I feel he is saying she is less capable than she really is, so worry he would use any time she goes out as 'wandering' when she is just wanting space from him.

I spent the day with her today, and, although she was tired, she seemed lucid, just ordinary conversations. Took her home. Brother was then annoyed she'd bought something again she already had...

I have been avoiding this due to my own issues - talking to brother. Talked to him today, and it just turns into a long list of complaints about things she has done 'wrong'.