Why won't my mother accept home help for my father.

[Clarkey]

Hello, first time here. I am the daughter. Dad has alzheimers and mum is carer.
Things have got to breaking point for mum as the carer and she wants respite.
We are organising that but she has no plan for what happens after that.

I have for the last year and before been offering help. they have seen the Alzheimers people, care organiser and all. My mum sends them away saying she can manage.

Home help people have visited. She doesn't want them.

So now because she is exhausted from not having help, dad will probably end up in fulltime care. You have to know my dad to understand this perhaps, he has always wanted to be in his own home and to die there. As a child I remember him saying "they will have to carry me out in a box".

I am ill long term myself but I have and continue to offer help to my mum. She won't even have a milkman. I have now got to the stage where I hate her. I can't even speak to her at the moment. things have got so bad because she won't allow any help other than family.

I spent two nights alone with my dad this week and I insisted she sleep at my brothers house. I was prepared to stay there the whole week. But brother has now gone on holiday and mum went home because she didn't want to be there on her own. I came home in total despair. Now I feel like I have lost my mum and my dad. I am so angry with her. People tell me she needs me. But I have tried so hard to help and all I get is excuses that make no sense to me.

I have walked away because I can't take any more and I don't want my father in permanant care home because he will die of a broken heart that his wife has left him there. Please don't tell me he will settle in because if you know my dad he won't. We tried day care and he tried to escape and go home. He just wants to be left in peace in his own home.

Thanks for any understanding of the situation you can give me. I currently feel like I want to die myself!!

 

[Rosettastone57]

Hi
Firstly I feel for you totally here and I'm not sure whether I can offer any magic solutions.
You don't say whether this is self funded or been properly assessed by SS.
I can only relate to my MIL situation where she refused all help. Hubbie and I just ignored her wishes and just organised care anyway and eventually it became the normal routine for her. She was unable to organise any shopping etc so we got a milkman who now delivers all sorts of groceries as well. It helped that we had POA so could just run everything ourselves.
Is this refusal about pride or spending money or just thinking being able to cope. ?

 

[Bod]

The answer to your question is ...Pride.
Now the solution is, very direct pointing out of facts to your mother, and father as far as he is able to understand and remember.
1. Mother is at breaking point, hence the need for respite.
She will not be able to care for father, when she has a breakdown.
2. Help is out there.
They've paid income tax/ National Insurance, all their working lives, now it's pay back time.
3. You are unable to do as much as you would like, because of your health. But are able to research, and set up help.
4. If help is not voluntarily taken up, the authorities who are legally required to act, will do so.
5. At which point there will be little or no choice for either of them.

Stark, but true.
It's their decision, guide them to the correct one.

The same conversation has to be had with all family and close friends.

Bod

PS

"I have walked away because I can't take any more and I don't want my father in permanant care home because he will die of a broken heart that his wife has left him there. Please don't tell me he will settle in because if you know my dad he won't. We tried day care and he tried to escape and go home. He just wants to be left in peace in his own home."

This is normal, everybody says the same.
When it comes to it, given time and a good Care Home, he will become used to the routine. (just don't try telling him!)

 

[Clarkey]

Thank you for your thoughts.

Mum is the carer and is fully well, so I can't organise the care without her permission. I have set up all the meeting etc for her and she just says she will think about it and nothing gets done. It will be self funded, they have good savings.

I have talked about this with her over and over and over. I got her sister to talk to her at Christmas.

She tells me the flat is too small for another person to come in. I tell her the idea is that you go out and enjoy yourself when they come in.

Every time I try to do something there is a nonsensical reason why not. Her not wanting to stay alone at my brothers house was another ridiculous excuse. I am only 5 mins away from her with dad. My brother said there is no food in the house we are not prepared. I said she can walk to the shop from there. I got to the stage where I couldn't stand it any more and I drove 2 hours back home. I can't speak to her now I'm so angry.

She has been looking at homes for respite with my brother this week. I phoned and said I was coming up didn't want any arguments and she was going to my brothers house for a couple of nights so she could sleep. She actually said ok.

I did two nights with my dad. He is hard work but a gorgeous man still. He has not run away or been violent.

We could set up a bedroom for her in what is currently the dining room. But she won't do that either. There are still solutions but she won't do them.

My brother just says we have to do what she wants.

She hasn't said it to me but he says she hopes he will like the respite care and then he can stay in there.

I accept that if dad lives on he will have to go into full time care eventually but if she would get some help he could stay home a lot longer. Having seen him this week I would say he only has 6 months to go now, his whole body is giving up on him. He is 87. I just feel we should do EVERYTHING we can to let him have his wish.

People have told me I should support my mum but I can't any more. I feel like I never want to see her again. How ever thought I could hate my own mum like this.

When she left this week we told him the Dr had said she needed some rest so she would be away a couple of days. He said "oh no I can't loose her". He did well with me. I wasn't sure what to expect. And I labelled up the toilet for him and he followed the instructions really well. A big problem is he pee's in the night and doesn't know what to do so wakes mum up to make sure he's done it right. So I wrote him instructions.... Pee - Press One - Wash Hands - Go back to bed. I put them up after he had gone to bed so hadn't had chance to explain it to him. He was up at 7.20 and I heard him say, I don't know what to do. Then he saw the note and read it and laughed. he can read really well still. I just feel we can help him and he can stay at home a bit longer. If only mum would take the professional help now.

 

[Beate]

Your Mum is the primary carer, and if she doesn't want help you can't force her. It does not look like she is neglecting your Dad and I guess a huge part of her refusal is pride in not accepting state help, but also denial in the altered situation. It's not helping anyone if you start to resent her. She has her reasons, and even if you don't understand them, she does not deserve your hate. Please, try to see it her way. She might be frightened about state intervention and determined to do without. That does not make her a bad person. The more you go on and on about it, the more she will dig her heels in.

A care home is not the worst option anyway. Some people positively thrive in one. Everyone says they don't want to go into one, but you would be surprised how many quickly settle.

How about you get her in touch with the local Alzheimer's Society or the Carers Centre so she can talk to someone with a sympathetic ear?

 

[Clarkey]

Your Mum is the primary carer, and if she doesn't want help you can't force her. It does not look like she is neglecting your Dad and I guess a huge part of her refusal is pride in not accepting state help, but also denial in the altered situation. It's not helping anyone if you start to resent her. She has her reasons, and even if you don't understand them, she does not deserve your hate. Please, try to see it her way. She might be frightened about state intervention and determined to do without. That does not make her a bad person. The more you go on and on about it, the more she will dig her heels in.

A care home is not the worst option anyway. Some people positively thrive in one. Everyone says they don't want to go into one, but you would be surprised how many quickly settle.

How about you get her in touch with the local Alzheimer's Society or the Carers Centre so she can talk to someone with a sympathetic ear?

No issue of state intervention. she has spoken to both and sends them away.

 

[Beate]

I would have thought sending them away is the issue.

 

[Witzend]

I think it can often be because a) they don't want strangers poking about their home, particularly if it's not as clean and tidy as perhaps it used to be,
and/or
b) a lot of older people are IMO wary of social services, partly because traditionally they were seen as needed only by the very poor or feckless, and/or because they don't want what they see (rightly or wrongly) as strangers interfering and prying into their affairs, and possibly having the power to enforce this or that, or split them up.

It may be well worth reminding anyone reluctant, that social services are all appallingly strapped for cash and will not usually insist on anything unless there is no longer any choice in the matter.

 

[father ted]

Oh Clarkey,
I do understand your frustration but as a complete outsider and having read what you have posted I would say this:

You say you 'continue to offer help', out of duty and wanting to minimise the distress to your Dad I'm sure but you are complaining about your mother whilst continuing to bolster a situation that is untenable particularly as you have health problems. Step back and maybe let your mother struggle a bit more it may help her come to the realisation that help is not such a bad thing especially if you refuse to step into the breach anymore.

'We tried day care and he tried to run away away' which is not unusual. He would eventually settle and perhaps even look forward to going or at least accept it. It would give your Mum and you a break and yet his intransigence on this matter doesn't make you cross with him?

Your Dad's fear at 'loosing' your Mum when she had a break shows that he is very dependent on her and maybe this is why she is so reluctant to accept help. Who knows about the relationship between a married couple but they obviously have an understanding no matter how frustrating this is for you.

I am sure lots of the problem is just fear of change and the present, no matter how challenging and difficult it is- is known at least and therefore easier to handle than the unknown. We all hate change more so as we get older.

This is not criticism of you but your Mum is just dealing with it the only way she knows how as she is the one with your Dad most of the time. Cut her a bit of slack, appreciate the benefits for your father if he accepts respite, daycare, respite, sitters or befrienders and take a back seat for a while and look after your self.

 

[Spamar]

If they're self funding, they don't need social services. I would lay it on the line - you're getting very tired, if you want to look after dad and keep him at home for as long as possible, you need help. I will arrange whatever you think you might be able to get away with, cleaner for instance, someone to sit with dad to give her some free time.
The alternative is to wait for a crisis and hope you can get him in a good care home in a hurry.
IMHO there is nothing so frustrating as those who want to hang on for whatever reason.
Good luck, will be thinking of you!

 

[Shedrech]

hello Clarkey
I appreciate your frustration; maybe it is that your mother has come to the end of her tether with having her husband at home and caring for him, and would prefer him to have full time care in a care home, possibly knowing that even with care at home, she just can't continue; after all she's the one with him all day, every day - if this goes against what your dad may have said in the past and your own thoughts about his care, she may well find it hard to explain to you
I'm guessing all this from

My brother just says we have to do what she wants.

She hasn't said it to me but he says she hopes he will like the respite care and then he can stay in there.

if this is what your mother really wants, she's not going to have a plan for what happens after the respite stay - and it's a lot to ask of her to continue to care for her husband at home against her own wishes; maybe it's time to do as your brother suggests
sounds as though your mum needs more than just a respite break; and her needs count as much as your dad's

 

[Clarkey]

If they're self funding, they don't need social services. I would lay it on the line - you're getting very tired, if you want to look after dad and keep him at home for as long as possible, you need help. I will arrange whatever you think you might be able to get away with, cleaner for instance, someone to sit with dad to give her some free time.
The alternative is to wait for a crisis and hope you can get him in a good care home in a hurry.
IMHO there is nothing so frustrating as those who want to hang on for whatever reason.
Good luck, will be thinking of you!

Thank you. I have again and again.
We have looked at care homes and there is one my brother thinks is nice for him. But if she would get some home help this could be delayed.
I have to stay away now for a while for my own health and sanity.
I can't talk to her because I am still angry.
I hope that will fade. Maybe its part of my grief.

 

[Clarkey]

Oh Clarkey,
I do understand your frustration but as a complete outsider and having read what you have posted I would say this:

You say you 'continue to offer help', out of duty and wanting to minimise the distress to your Dad I'm sure but you are complaining about your mother whilst continuing to bolster a situation that is untenable particularly as you have health problems. Step back and maybe let your mother struggle a bit more it may help her come to the realisation that help is not such a bad thing especially if you refuse to step into the breach anymore.

'We tried day care and he tried to run away away' which is not unusual. He would eventually settle and perhaps even look forward to going or at least accept it. It would give your Mum and you a break and yet his intransigence on this matter doesn't make you cross with him?

Your Dad's fear at 'loosing' your Mum when she had a break shows that he is very dependent on her and maybe this is why she is so reluctant to accept help. Who knows about the relationship between a married couple but they obviously have an understanding no matter how frustrating this is for you.

I am sure lots of the problem is just fear of change and the present, no matter how challenging and difficult it is- is known at least and therefore easier to handle than the unknown. We all hate change more so as we get older.

This is not criticism of you but your Mum is just dealing with it the only way she knows how as she is the one with your Dad most of the time. Cut her a bit of slack, appreciate the benefits for your father if he accepts respite, daycare, respite, sitters or befrienders and take a back seat for a while and look after your self.

Thank you. I think day care was all too much for him, it was left to late and dad isnt a social person, he just loves family. It was a taxi ride away. Now he just likes to be quiet at home. I have stepped away. I am still angry. I hope that will go in time. I cherish the two days I have had on my own with him and the Alzheimers humour and that he said I was a lovely lady. Seeing him so vulnerable and lost makes me love him more. My brother says I wouldn't feel like that after a year of it. I still feel my dad is in there and sometimes there is a glimmer of him. But the new dad is still a kind and gentle man.

 

[sistermillicent]

I understand the frustration, my dad wouldn't let anyone in the house either when he was caring for mum. I tried and tried.
When I eventually saw my gp with depression she told me that usually with dementia things only change when there is a crisis. I thought to myself "Oh no it won't with us," but this is exactly how our journey through mum's dementia progressed. With each crisis dad would finally accept some change while fully expecting it to be awful and not work.
It is very hard when your efforts are thrown back at you but it is their relationship and ultimately their decision.
I know about the anger too, try to see someone and talk that out because it eats away at you. xx

 

[Clarkey]

thank you for your understanding Sistermillicent it means a lot.

Agree on the crisis. We had one in June when mum had shingles - one in Oct - and now again. I keep saying the same helpful things over and over and over. I had to run away this time and now can't speak to my mum at moment. The crisis do my health no good at all. I have CFS and I keep begging for a proper plan so that I can get well knowing they are ok too. I live 2 hours away so responding to a crisis is exhausting for me just to even get there!

Before I left I told my mum I had said everything I had to say on the matter now and was going home.

I have booked a phone call with Alz Org tomorrow so discuss my anger and frustration. unfortunately the lady who knew us there left and has not yet been replaced.

They helped us last week with recommendations for respite/homes. Such a lifeline.

 

[Clarkey]

I understand the frustration, my dad wouldn't let anyone in the house either when he was caring for mum. I tried and tried.
When I eventually saw my gp with depression she told me that usually with dementia things only change when there is a crisis. I thought to myself "Oh no it won't with us," but this is exactly how our journey through mum's dementia progressed. With each crisis dad would finally accept some change while fully expecting it to be awful and not work.
It is very hard when your efforts are thrown back at you but it is their relationship and ultimately their decision.
I know about the anger too, try to see someone and talk that out because it eats away at you. xx

thank you for your understanding Sistermillicent it means a lot.

Agree on the crisis. We had one in June when mum had shingles - one in Oct - and now again. I keep saying the same helpful things over and over and over. I had to run away this time and now can't speak to my mum at moment. The crisis do my health no good at all. I have CFS and I keep begging for a proper plan so that I can get well knowing they are ok too. I live 2 hours away so responding to a crisis is exhausting for me just to even get there!

Before I left I told my mum I had said everything I had to say on the matter now and was going home.

I have booked a phone call with Alz Org tomorrow so discuss my anger and frustration. unfortunately the lady who knew us there left and has not yet been replaced.

They helped us last week with recommendations for respite/homes. Such a lifeline.