Sister and I can't agree regarding Mum's care

[gandalf456]

In a nutshell, Mum has dementia and is still at home with carers coming in 2 x per day, some of whom are better than others. She also drinks a lot of alcohol, which we are getting under control slowly as suggested by the social workers. She seems so much better as a result.

My sister very much wants Mum to go into a care home, whereas I would like to keep her at home a little longer. Earlier in the year, she broke her hip and had a long stay in hospital where she became increasinlgy confused and fought everyday with us and the staff to come home. This has really put me off elderly care

We are both local. At the moment, I am going round her house daily - except one day a week when my sister goes round. After these visits, she gets very emotional and rants on and on at me on the phone about how Mum would be better off in a home and how I am burying my head in the sand and the stress is causing her all kinds of health problems.

Apart from the reasons above, some of my reluctance comes from the fact that my sister is not very reliable and it is likely that she would not be very hands on with the work involved in getting this organised financially, practically and would not visit very regularly.

I do believe, for now, she would be happier where she is and a home would disorientate her and make her dementia worse.

Unfortunately, my sister can be very overbearing and we do have a difficult relationship. I want to make this decision because it is best for her and I feel it in my heart and I don't but fear I'll end up agreeing because of the pressure.

Don't get me wrong, I can see some advantages but not enough to take the leap of faith. Has anyone been in this situation and how did it work out?

I feel you OP. My mum and her brother were in agreement thankfully - she has stayed at home as my mum really didn't want her to go into care, believing she would go downhill fast. I don't think she will ever go into care now.

Agree with @moonypadfootprongs

Caring for a relative with dementia is absolutely draining, even with everyone involved in full agreement.

For from you say you have got your Mum's care pretty much sorted. And really the problem is you and your sister can't agree on the way forward. So time to play hardball. If things have really got to the point where you feel it would be easier if your sister just stepped away, then you need to tell her that clearly and firmly. That you are not going to put up with this harassment of you and your family anymore. Possibly arrange a meeting with the home care manager; ask your sister to write out her points of concern and go through them. For some people with dementia it's clear cut for them to remain at home with support, for others it's not.

If your sister does step away, can I suggest you arrange care so that you have time 'off' from caring for your Mum. I don't know if you have children as well as a husband, but they need your care and input too, and you also need time to re-charge your batteries too.

Your sister may not have the emotional or physical reserves that you do in terms of proving care for your mother. Your sister may not have the kind of relationship with her that you do that makes it possible to tolerate the gauntlet of emotions one deals with when their parent suffers with dementia. I think it's possible that your sister is being more practical than you are about getting your mother into care.

I'm sorry for what you're dealing with and I can't imagine how difficult it is.

I can see both sides of this argument. Since it seems a home is on the cards eventually do start looking for one you'd like.

Agree with PP that your sister is obviously struggling and has made a good suggestion, it seems unfair to force her to do something she's not happy with when she's willing to take the responsibility to change the situation.

I also wonder whether a home might be nicer for your mum. You've said she doesn't go out so she has 3 'visitors' a day who are presumably quite rushed or stressed. In a home she'd have a lot more company, activities she could join in and a more relaxed care routine. But you know her, this may not make her happy.

Either way it sounds like your sister needs to be relieved of the caring pressure. Don't suppose she can fund another care visit on her day so you feel she's taking some responsibility? She might even pop in more to visit if she doesn't need to do the care, it can be very distressing for some people to see their parents diminish.

@iwantavuvezela that is what we are doing but, unfortunately, the issue keeps cropping up everytime there is a problem. last night, I was getting angry messages to the wee hours and I suspect alcohol was involved Some of them were really unpleasant.

I do think if my sister was determined to put Mum in a home, she would do more to drive it but she has form for getting really involved for 2 weeks and then being too busy or not being able to cope. It has been a pattern in Mum's care throughout. I being pressured into a decision I am not sure about then I will end up sorting it all out too.

One thing to seriously consider is what would happen if you were unable to visit with your mother for a week or more? Ie, a medical issue that kept you away, or your husband in the hospital? Or what if her favourite cater was off for a couple of weeks?

The good thing about a care home is that staff is there. It doesn’t hinge on a few people, and provides continuity of care.

As you mentioned health concerns of your own, AND we’re heading into cold and flu season with Covid still a serious issue, these are things to think long and hard about.

Your sister is not coping and has let you know this. She is developing health issues due to her struggles to contribute to care for your mother. Yes, you are doing more. Obviously you have greater capacity for this than she does. Solutions need to be looked into to relieve your sister. It's in no-one's best interest to be cared for by a caregiver who is barely coping.

Are you sure she is safe at home though?

What if something happens at night?

The carers or yourself can't be there 24/7.

If she has a history of falls, alcohol abuse and dementia and is at a stage where she is unable to cook for herself or keep clean I don't see the logic in leaving her alone at home alone for periods of time because realistically she is simply no longer independent in any way.

I think your sister is right and that you are letting your poor relationship with her cloud your judgement.

As you say, it’s your sister who is the problem here.

Would your mum be self-funding? In which case can you give your sister the job of working out finances, checking homes etc to draw up a plan and shortlist, with a view to your mum moving in to a home when xxx happens (Christmas, medical crisis, whatever)?

If your mum will be dependent on council care then it’s not your choice anyway unless you and your sister have a spare £1-2k a week to spend on your mum’s care.

She would be self funding, yes

I think what your sister doesn't get is that homes are not these marvellous establishments where everyone gets the best care etc etc. I think you may need to be more assertive with her. Can't you tell her that the time may well come when this has to happen but you are currently managing to carry the load with your daily visits. Thank her for doing her one day and be clear that you will not be tolerating any more phone calls or texts on that day off. In the meantime maybe you could do some visits so that you find out about the local options should it be needed? Have you considered live in care at home? Is this financially feasible?

Speaking as someone who has been through all this, start looking at care homes now with a view to moving your mum early next year. She's only going got get worse and if you leave it too long it will be too late.
Don't blame your sister for not being able to cope though. Some people can't.
Its already affecting you and your family. Imagine what its going to be like when your mum needs someone with her 24/7.
Because your mum will be self funding, you have much more choice on where your mum goes, but make sure you find somewhere that can cope with dementia patients so she doesnt have to move as she gets worse.
Your mum could go on like this for years, in my case it was 9 years, and it will wreck your physical and mental health trying to care for her alone

I do think if my sister was determined to put Mum in a home, she would do more to drive it

This is confusing. What more can your sister do at this point? You're not listening to her because you've already decided what's best for mum and you're not taking your sisters wishes into account. Perhaps only visiting one day a week means your sister had a better overview of how much your mum has deteriorated and you're not seeing it as clearly because you see her every day. She's hassling you with phone calls and messages because she can't get through to you.

In my opinion if your mum is going to end up in a home anyway, it's better to do it while she still has some capacity so she can adjust.

Tell her that you agree to put her in a home as long as she agrees to do all the legwork to arrange it. Tell her you dont have any energy to work on it. If she doesnt do it then you continue with the status quo!

Our friends mum improved enormously when moved to a home. She lived in a supported flat but still didn’t see people much and wasn’t eating well.
Putting her in the home gave structure and she was eating regularly and having mental stimulation. Friend said it was like she had gone back a few years.

What if something happens at night? Something can happen at night in a care home too.

Sorry if I’ve missed it - what does your mother want?

MIL has dementia (vascular and alzheimers) she has carers in 4 times a day which is working at the moment. The carers said

Why don't you think about putting mum into a care home for respite for a month - you can then extend the stay to permanent if you both find mum is coping better.

My DGP with dementia went into a care home and it's added years to her life. She enjoys the company as she was lonely living alone and getting 3 good meals a day and someone making sure she takes her medication has done wonders for her.

Personally I think it's sad making people live alone at home in their own place. I guess it depends what the care home would be like, but I think we need to move away from the "a care home is the last resort" mentality and see it as adding to someone's quality of life.

If she's living at home at the moment, she probably doesn't need a dementia care home and would manage in one with a bit of nursing care.

(Sorry) the carers said they can usually tell when a client needs to go into a home... often it starts with night waking, so if they are very disturbed at night, that sort of thing.

Would look at home availability locally. Up the number of care visits, employ a cleaner and gardener .

Your sister does not want to be involved in personal care and probably sees the deterioration in her ability to look after herself more only seeing her once a week.

look at increasing the care package and step back yourself.
I'm north west and a decent care home here is £1500 a week.
For how long will your mum be able to self fund?
Does she have a home to sell?
4 times a day care would take the strain off you and your sister.
If you are looking for a care home , personally recommend a dual home. They do exist. As in the have care and then nursing for when residential care is no longer feasible.

Having been through this, moving to the care sooner will be better for all of you in the long run, my mum passed way last week after even happy years in a place she was cared for and had friends. It was not easy and at first she was in shock but I wish we had moved her sooner and she would have enjoyed it even more. Once you have started the cycle of falls and deteriorating health it is harder and harder to move them.
I understand both of you and your sisters POV as I and my sister flipped on the decision but ultimately it was better for everyone to have 24hr care and not getting the alarm calls when carers were not in the house.

In my opinion, if you are doing the bulk of the caring anyway, and your mum wants to stay home and is safe at home, I think you are the one who should be deciding and not be railroaded by your sister

We had similar with my dad, he had a degenerative disease and didn't want to go into a nursing home, we had a big family disagreement about it, two siblings wanting to support my dad in his wish to stay at home and pass away at home.The others wanted him in a nursing home, in my view it was only for THEIR convenience, albeit it was in the guise of us not 'doing the right thing for dad'.

My sister and I ensured dad stayed at home, and he died peacefully where he wanted to be. I will never regret that decision.

OP you said upthread that in some ways it would be easier if you did it all yourself, so maybe that's a way to go.

It's an amazing commitment to go over 6 days a week, but to be honest I would also find one day a week hard to manage as well.

Also you said you had some health issues - what happens if you get a bad cold ( my DPs are very disappointed I could not visit this weekend as I have a hacking cough I don't want to give to them) or you want to go on holiday?

Your DMs care should be a balance between what is best for her and ultimately what is sustainable from her carers. Your Dsis doesn't want to do it anymore- that's her prerogative, but by all means see if you can get her to investigate nursing homes and take that one on as she's the one who wants it.

I do think if my sister was determined to put Mum in a home, she would do more to drive it but she has form for getting really involved for 2 weeks and then being too busy or not being able to cope. It has been a pattern in Mum's care throughout. I being pressured into a decision I am not sure about then I will end up sorting it all out too.

You* *could agree that it’s time to start looking for a home. Give your sister the task of researching suitable care homes. Tell her it’s a great idea for her to do some looking around and seeing what the options are. That you agree it is the next step but just at the moment you’re concentrating on sorting immediate issues with the home care team so if she can do the work needed to get the ball rolling with places to have a look at that would be great, perhaps with an aim to move mum next year.