When Family Disagree About Elder Care

[ZekeZeke]

I live in Ireland, my MIL is 90 and has moderate Alzheimer's type dementia and lives alone.
It's just DH and his brother, and the wives, me and SIL.

I organised medical card, carers who visit twice a day, Cleaner once a week, meals on wheels, Alzheimer's carers, a motorised wheelchair for her. I order her incontinence wear, do her food shopping and lots more.
I'm good at admin!
Today I received 10 calls between Alzheimer's carer, Occupational Therapist, carer and a nursing home. It's not usually this amount but I receive at least 15 calls a week.
I work Monday to Friday and visit MIL every Sunday (50 minutes there and 50 minutes back driving).
That's the background.
Anway, here is my question.
MIL is entitled to 28 days respite (two blocks of two weeks pa) in a nursing home. This was recommended to me by the Alzheimer's carer, I didn't know it was even an option.
It's another form filling exercise. PHN, doctor and us (her family). Then once the form is received it is valid for 6 months.

I asked SIL when they want to avail of the two week respite as I would need to book it in. Her response was MIL doesn't need respite, that she is doing great and it's good to know its there when MIL needs it, maybe in the winter.
I'm going to sound like a bitch but I need a break. I really do. I want two weeks of no phone calls or emails or texts or driving.
I've replied to her saying we can also get 2 weeks during the winter, that respite is not just for the elder but the carers and that I think it would do her the world of good. She is alone at home. So she would have Company. I've saud DH and I are taking two weeks off at x time this summer, No reply!

So, what do you do when you disagree about the care of your elderly parent/MIL?
(DH thinks she should go to a nursing home full time). I want to down tools.

Then you just down tools. This situation is for your Dh and his brother to sort out, not you and SIL. Take a large step back and tell Dh he needs to figure it out now. If his brother disagrees to respite and nursing home care then he can take over all the care. You need to make sure his details are passed on to the relevant medics as a contact for any issues from now on. Be firm in standing down. As long as you are there to do all the work then things won't change as it looks as if mil can manage.

Er, respite is for the carers, not the Alzheimer sufferer. It might be a holiday for them, but it's vital for you. I'd farm a few more jobs out to your SIL if I were you and then see how she feels about respite care!!

Pick a date that's suitable for you and let your SIL know and if she wants to change it, then that's up to her. But you crack on with your own plans.

It is such hard work and the family are so lucky to have you. Put yourself first for a while because it's a long slog. x

If they don’t want to use the respite they’ll have to take over your duties instead. Just be firm but polite:

“Hi BIL and SIL, I understand that you don’t want MIL to use the respite care we have been offered. Unfortunately me and DH do need the break and will be taking the two weeks on x date. If you feel strongly that MIL should remain at home you will need to provide all of her care during this time. Here is a list of what we usually do each day:

If I don’t hear from you I’ll assume you are happy to take on these tasks. If you would prefer for us to use the available respite care instead, please let me know by x date.”.

It is essential that you take the time you need to recharge .

Never mind respite, your MIL needs to be in a care home permanently. Me and DH did the kind of admin you describe for FIL and it is really stressful. FIL was lonely and ultimately needed more care than carers could provide.

Your SIL is ignorant. You need to get your dh to speak to his brother about the strain on you - it's disgraceful when one sibling sits back whilst the other works like this. Exactly what happened to us.

Sorry, all I read was “it’s taking the piss now all this women’s work. Am I ok to stop?”

Yes. The answer is yes! She isn’t your responsibility!

Why have you made this huge rod for your own back?
please put it away and go do something nice for yourself

one sibling sits back whilst the other works
It seems to be universal, whoever blinks first it becomes their problem, the other person steps back because they know that YOU cannot now step away, if anything goes wrong it will be YOUR fault

Before I even clicked on this I knew the person wanting the elderly person to go into a home would be the one doing everything, and the person saying they don't need it is the one who never helps out. Definitely take advantage of respite care, definitely move towards a residential or nursing home if you think it's appropriate.

I'm going to sound like a bitch
OP, I find it alarming that they've gaslit you into thinking that you're in the wrong!

You aren’t obligated to do any of this work. If you want a break, insist on a break. You can even insist on longer than 2 weeks. There are other family members available.

It’s also ok to just stop and tell your husband and his brother they need a new plan.

Just out of interest why is your husband not sorting things out directly with his brother? My sister and I are in a similar situation with our mother, but we wouldn't put all the work on our partners?

Also, my mum had to go into hospital fir a few days and I was so worried that she'd be miserable. She had a great time. So many people to chat to, the staff were lovely to her and she loved the hospital food!! My sister rang and they asked mum if she'd like to talk to her. Mum was eating and said, no but give her love to us and the dog. Haha. It gives me confidence that putting her into a home won't be all bad for her. Maybe the same for your MIL?

If you've had enough, and the sheer relentlessness is hard, then you definitely need to take a step back and either off or share the load. Best of luck.

Agree with the others. Why on earth is this falling to you predominantly and your SIL? You should be expecting your DH and his brother to step up. If they’re not prepared to organise her care and do all the running around then she should be in a nursing home.

SIL is unreasonable. It’s you who is going the heavy lifting. 15 calls a week would be way too much for me

@MaybeCrazy2 exactly

Book the respite care.

so why is your husband not the liaison person for his mother, why are you having to field all these calls etc.
it's nothing to do with SIL unless she does as much as you in relation to MIL.
book the respite and announce that after that you will step back and leave the two brothers to look after their own mother.
would your husband d all this for your parent; i doubt it.

In my view, the person who does the majority of the care, has the biggest say.

I know someone who gave up her job to move in with her 6ft4 elderly dad with dementia and arthritis. Her three siblings arranged to give her 3 in 4 Saturday nights off by making a rota to cover Saturday afternoon - Sunday afternoon.

After two years she was broken. His dementia had worsened. He was angry with her for trying to get him to wash, eat, toilet etc and she could not physically support him because he was much taller and heavier than her. His bedding needed changing daily and he was not reliably continent.

Her siblings agreed on two 15 min carer visits a day but did not think respite, or a move to a care home was needed. 'He seems quite bright with me', said one, and they all agreed. Only one of the siblings ever changed the bedding. On the basis of spending 24 hours with him once a month, they felt they could dictate to their (youngest) sister who was spending 27 or 28 x 24hrs each month caring for him, how her life should go.

Wrong. So wrong.

They had joint PoA. I insisted on joint and several PoA for my parents.

@Scarby9

In my view, the person who does the majority of the care, has the biggest say.

I know someone who gave up her job to move in with her 6ft4 elderly dad with dementia and arthritis. Her three siblings arranged to give her 3 in 4 Saturday nights off by making a rota to cover Saturday afternoon - Sunday afternoon.

After two years she was broken. His dementia had worsened. He was angry with her for trying to get him to wash, eat, toilet etc and she could not physically support him because he was much taller and heavier than her. His bedding needed changing daily and he was not reliably continent.

Her siblings agreed on two 15 min carer visits a day but did not think respite, or a move to a care home was needed. 'He seems quite bright with me', said one, and they all agreed. Only one of the siblings ever changed the bedding. On the basis of spending 24 hours with him once a month, they felt they could dictate to their (youngest) sister who was spending 27 or 28 x 24hrs each month caring for him, how her life should go.

Wrong. So wrong.

They had joint PoA. I insisted on joint and several PoA for my parents.

I appreciate this will sound harsh but I've been there with an elderly relative and wouldn't have taken on a caring role to the detriment of my own health and my own family's needs. I cannot understand why anyone would be such a martyr and do all the work. What do they gain from it long term? Their parent will be equally looked after by carers or in a care home by staff who at least get to go home and wind down after a shift. Do people look back after many years of stress caring for an elderly relative and think, 'thank god I looked after my parents, despite the fact that I am now suffering emotionally and physically after all those years and my family life/career has also suffered'? There are no prizes for effectively giving up your life in these circumstances when there are perfectly good alternatives available. It's a shame your friend thought it would be a good idea to give up her job while her siblings sat back and let her do everything.

@ZekeZeke you need to put your foot down and stop all you're doing before you end up like @Scarby9 friend, although I'd say you're close to the edge already.

Huge sympathy. Seems to be a pattern of siblings doing nothing except for being armchair critics.

Thank you all. I had a long chat with DH and explained I just couldn't do it anymore.
Particularly as I now know BIL/SIL are not on board with respite.
So, I downed tools. Told them I'm stepping away, I will visit once a month but that's it. They can take over everything. (Gave them a list and all relevant numbers).
DH will continue to visit weekly.
They thanked me for everything.
I feel 10 stone lighter. I had a few calls from different carers, meals on wheels and medicals staff and just gave them BIL number.
I emailed all contacts asking them to update their records.

I don’t blame you and think you’ve done the best thing in the long run. It’s always the person least involved in care who has the most to say about it 🙄

Well done. That must have been difficult fir you to do. But it's nice yo see that they dud appreciate all you'd done.

Sort of off topic but...you get meals on wheels around you? Is that through the council or privately?

Meals on wheels is a voluntary organisation €3.50 per meal, includes dessert

That's fantastic. But I just realised you're in Ireland. A private carer comes and puts a sandwich that I made and a cake that I bought on a tray, and put some dog biscuits in a bowl (for the dog obvs) and I pay £13.20. I think we might be moving to Ireland!

@Just10moreminutesplease

If they don’t want to use the respite they’ll have to take over your duties instead. Just be firm but polite:

“Hi BIL and SIL, I understand that you don’t want MIL to use the respite care we have been offered. Unfortunately me and DH do need the break and will be taking the two weeks on x date. If you feel strongly that MIL should remain at home you will need to provide all of her care during this time. Here is a list of what we usually do each day:

If I don’t hear from you I’ll assume you are happy to take on these tasks. If you would prefer for us to use the available respite care instead, please let me know by x date.”.

It is essential that you take the time you need to recharge .

This!

Moonbedazzled our care is very good.
MIL gets free carers each morning and evening for an hour.
Another carer with Alzheimer's specific training visits every Monday and Tuesday afternoon (2.5 hours each day). MIL Is washed, dressed, incontinence pants put on, meals prepped, washed up, vacuuming done, Bathroom and kitchen wiped, bed changed.
Meals on wheels are delivered 3 times per week (they double up the meals so we have 6 meals pw).
We have a motorised wheelchair. Aids on the house.
I am very lucky. All of this is free (except meal on wheels).