How to best help Dad with Mum's care

[Purpleshoes]

Hi

I'm new to this forum but have looked through lots of supportive posts and wondering if anyone could offer me any words of advice.

To cut a long story short my mum who is 67 has had Alzheimer's for about the last 2 years we think but only diagnosed at the end of the last year, following which her condition has significantly deteriorated. She lives with my Dad who in my opinion is struggling to cope with it all but won't accept any help from my brother or I. He has never been someone to talk about feelings or anything remotely like that and has turned into a very closed off person in the last year to the extent its very hard to talk to him at all.

My mum refuses to acknowledge there is anything wrong with her but now needs watching 24/7 for her own safety. She doesn't even want Dad to tell us about any of it but he is trying to keep us informed as best he can.

Anyway my question is does anyone have experience of this? I've tried to offer Dad time out where I can be with Mum, suggested at home care agencies who we could start building relationships with and lots of other things, but he doesn't want to hear of any of it as he thinks it would upset Mum more. He is retired but did have loads of interests and groups he was a part of which he now given up as won't leave Mum alone. He is exhausted and a shadow of the man he was before this and I can only imagine how difficult it is for him. They used to have a very busy social life but from what I can gather have totally withdrawn from this.

I think I've come to terms with whats happening to Mum which has been very hard but now I feel devastated over the impact its having on Dad which will only I imagine get worse. Our relationship has become very strained over the last few years as Mum was very confused about things she thought she'd asked my brother and I to do etc when we hadn't and then Dad telling us off for it before we knew what was wrong.

I don't want to force help on someone who doesn't want it but just want to know what I can do for the best, even if that's just to wait to be asked for help. I don't have any friends who have experienced this cruel disease with their parents and just not sure who to talk to.

I should add I have a 3 year old and a 1 year old so life is quite busy at the moment.

I hope this post doesn't sound all about me as I really don't mean to come across that way, I just don't know what to do for the best.

Thanks all.

 

[Bod]

Hi & welcome.
Yes you will find allsorts of advice here from folk who have hard won personal experience.
Starting to put help in, is very difficult, especially if they say they can "cope".
My advice would be to try to help Dad cope, as he will have to be strong to deal with Mum.
Do the homework, so you can put correct and useful answers to his questions.
Is Attendance Allowance claimed? How much is it?
Above all, get Lasting Powers of Attorney in place, both health and finance, for both of them. This can easily be done without solicitors,( just answer 1 question at a time, before looking at the rest.)These will be needed later, and are better obtained now before they are needed.

Keep asking questions, they will be answered.

Bod

 

[marionq]

Good advice from Bod. I would strongly advise you get them to talk to Alzheimer's Soc for a list of groups in their area. Over the last two years I have taken John to everything and anything, football groups, singing groups, walking groups allotment groups. As he has declined I have been so grateful for the company these have given and for the contacts, informations and advice given.

It also meant that there was no resistance to going to daycare because he was used to meeting these people in a group situation.

Best of all we have enjoyed them and had a lot of laughs.

 

[Jacquetta]

Good advice from Bod. I would strongly advise you get them to talk to Alzheimer's Soc for a list of groups in their area. Over the last two years I have taken John to everything and anything, football groups, singing groups, walking groups allotment groups. As he has declined I have been so grateful for the company these have given and for the contacts, informations and advice given.

It also meant that there was no resistance to going to daycare because he was used to meeting these people in a group situation.

Best of all we have enjoyed them and had a lot of laughs.

Don't forget if you have a diagnosis of Alzheimers /demetia and are still at home you can get a % reduction in your council tax, you just haVe to get a letter from the gp and fill in the online form with your LA and send it to them. You can also access social services for someone to come and sit with your Mam for a few hours a week , you may have to pay a little for this service but not much . We're just getting this service for my Mam now so my Dad who's still fit at 88 gets to go and have a round of golf He's there for Mam all the time so its good that he can get out and she gets someone different to converse with . It's hard

 

[Quilty]

Perhaps a heart to heart chat with your dad about how you are so worried about him and that you want him to have some outside interests. If you sell the benefits of seeing more people and having a bit of variety he might listen. He loves herxand wants to look after her. Help him see he can do that and still have a rest. Best of luck.

 

[Bill Owen]

Its not all you

hi

i'm new to this forum but have looked through lots of supportive posts and wondering if anyone could offer me any words of advice.

To cut a long story short my mum who is 67 has had alzheimer's for about the last 2 years we think but only diagnosed at the end of the last year, following which her condition has significantly deteriorated. She lives with my dad who in my opinion is struggling to cope with it all but won't accept any help from my brother or i. He has never been someone to talk about feelings or anything remotely like that and has turned into a very closed off person in the last year to the extent its very hard to talk to him at all.

My mum refuses to acknowledge there is anything wrong with her but now needs watching 24/7 for her own safety. She doesn't even want dad to tell us about any of it but he is trying to keep us informed as best he can.

Anyway my question is does anyone have experience of this? I've tried to offer dad time out where i can be with mum, suggested at home care agencies who we could start building relationships with and lots of other things, but he doesn't want to hear of any of it as he thinks it would upset mum more. He is retired but did have loads of interests and groups he was a part of which he now given up as won't leave mum alone. He is exhausted and a shadow of the man he was before this and i can only imagine how difficult it is for him. They used to have a very busy social life but from what i can gather have totally withdrawn from this.

I think i've come to terms with whats happening to mum which has been very hard but now i feel devastated over the impact its having on dad which will only i imagine get worse. Our relationship has become very strained over the last few years as mum was very confused about things she thought she'd asked my brother and i to do etc when we hadn't and then dad telling us off for it before we knew what was wrong.

I don't want to force help on someone who doesn't want it but just want to know what i can do for the best, even if that's just to wait to be asked for help. I don't have any friends who have experienced this cruel disease with their parents and just not sure who to talk to.

I should add i have a 3 year old and a 1 year old so life is quite busy at the moment.

I hope this post doesn't sound all about me as i really don't mean to come across that way, i just don't know what to do for the best.

Thanks all.

i thnk you dad is finding it had to come to trmes with it . I felt like this my self over my wife. Did not want any help but it will catch him up sorry im dis lixic .but wth a littel bit of help in the right dirction . He will give in and have some help. When he see it how good it can be for both of them .be strong for him

 

[Tears Falling]

Let your dad know that you are there. Let him know he can tell you everything, the good, bad and terrifying reality of his fears and the situation as he sees it. Encourage him to let you help. Visit your mum and him, you may find he will then start to take 5 mins whilst you are there as a break and then build from there. Be honest with him about your concerns for them both. Expect to be upset. Both by the situation with your mum and how your dad is coping. Expect tears. Every time you are rejected and your offers of help and assistance are turned down, brush your self off and stand up again and keep offering, keep supporting, keep telling him you love him. Try and heal the history between you.

Sending you strength.

 

[Purpleshoes]

Thank you all for your comments, the advise about just popping in for 5 mins and gradually extending it is a great idea.
Luckily we already have power of attorney all set up.
I'll get researching local alzheimers groups as feel they'd really benefit from socialising without dad having to worry about what anyone else is thinking.
It's good to hear from people who have been in my dad's situation just to know how they are feeling and gain some perspective.
Thank you all

 

[cafegal]

wow, I feel like I wrote your post almost to a tee! Big hugs. My dad is having a hard time coping with my mom's undiagnosed decline (she is also in denial) - although after about a year (or two) he is finally coming to terms with it. We have had some strained times too where he has not wanted to talk.. My kids are slightly older than yours - 5.5 & 7 yrs - and life is very busy.. I live across the country from my parents.. I worry often and try to do my best but feel pretty helpless..

I have no real advice yet, other than to not give up calling, visiting, caring.. hope we stay connected on here.

 

[sistermillicent]

You really don't sound as if the post is all about you so don't worry, and you certainly have a part to play which is not going to be easy for you, I am used to finding it very difficult to being allowed to help my parents, though over the years it has changed so that I am now called immediately there is any crisis, but that's another story.

One of the first things I did when dad needed help but wouldn't accept it was to get him a carers assessment. This involved me being a very intrusive daughter and getting the phone numbers of people involved with mum's care and being insistent that he had this and going with him, also arranging my sister to sit with mum while we went. On the way back from what had been the first time I had heard him talk about his situation I persuaded him that he should apply for mum's attendance allowance (he didn't want to as he didn't want to scrounge off the state)
Getting his entitlement from that meeting of carers twice a week was a year long battle, mum wouldn't like it, what good would it do, he couldn't see them today, he didn't have time..... endless excuses. In the end I sorted it out myself, made all the appointments and was there for the first visit, I sent him out before they even got there. Mum accepted the carer amazingly well.

It's a very long story but I hope sharing a little of it might help you to see that what appears impossible can become a reality, it just takes time. I have not agreed with a lot of what my dad has done but I have kept my mouth shut as it is his marriage, his wife and him. The one thing I would not stand for was him refusing every single bit of available help, but he was terrified that mum would be taken away and once we got over that hurdle it has been more easy to negotiate with him.

Good luck, it's a long haul.

 

[Dustycat]

Oh how this reminds me of my own situation. My Mam had vascular dementia. My Dad looked after her and now has Alzheimers. Whilst he has his own problems I firmly believe that looking after Mam contributed to his decline. She died last year and Dad is now in care. If I had my life over again I would have intervened more in the early days. I was always too busy at work and scared of upsetting the apple cart. My mam could be difficult at times but when push came to shove and we had to introduce help for Dad she accepted with a bit of persuasion. Hang in there and try to support your Dad as best as circumstances will allow. X

 

[Witzend]

The one thing I would not stand for was him refusing every single bit of available help, but he was terrified that mum would be taken away and once we got over that hurdle it has been more easy to negotiate with him.

I think a lot of elderly people are very wary of involving social services - they have the idea that they will pry into their private affairs and interfere, and may have a very real fear of SS splitting them up 'for their own good'.

Always worth impressing on any such people that nowadays, the very last thing most SS depts want to do nowadays is spend any money if they don't absolutely have to.

 

[Risa]

Hi Purpleshoes

Totally understand where you are coming from - my Dad lost 3 stone in weight through stubbornly insisting he could cope with looking after Mum by himself plus run the house and do everything by himself. My sister and I went from suggesting to basically saying "we have set this up, we have made this appointment" as he was getting ill because of his attitude. We had to take a slightly naggy/bullyish stance to get through his stubborn skull that he can't do it all. We also emphasised that he was being selfish as if he made himself ill, then it wouldn't help Mum and she would be very vulnerable on her own (say if he ended up in hospital). It did take some time but now he is very open to help as he can see that it does make a difference to him and we feel better that as a family we are all working together.

Will your Dad let you help in small ways? We initially concentrated on more practical ways to assist him such as organising his grocery shopping so that it was delivered on-line and getting cooked microwave meals delivered so it was less for him to do. Things like organising help with cleaning the house or having someone take care of the garden/DIY might be useful.

We also act as a secretary to Dad and take care of booking him any appointments, completing any forms (such as Attendance Allowance), basically anything that can be done by someone else and will give him one less job to do.

Keep on at your Dad (in a nice way ) that you want to help and by helping him, you are helping your Mum and it is important that he allows you to do this.