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 have to say, my MIL had dementia and home care for a few years, with us and my sil doing a fair bit too. Eventually she started wandering and obviously wasn’t safe on her own, so we looked into homes. We were lucky and found a fantastic one. She didn’t deteriorate, she thrived. Yes it took a couple of months for her to settle, and she’d say she wanted to go home a lot (but she’d say that in her own home too), but she was really well cared for, cleaner and put weight on. It was better for us. In the first few years she was in the home we took her out for trips to cafes etc. It was much more enjoyable for us all, her included, than the previous years that we’d been doing her care at home. Like quality time. When she got older and the dementia got worse they were very patient and kind with her. That home was just what we needed.

This is very tricky OP. The problem is that neither you nor your sister are right - or at least, it's not obvious who is right and where your mother will be most comfortable. However, on balance, I agree with the posters who suggest starting the process of getting her into a care home now. It can take a while and will probably be a harder transition if she continues to deteriorate.

I would try it for a couple of weeks of respite care and see how you both find it. Your mum would also have company all the time and things to do, which if she is housebound, she won't have now. We have had to place three of our four parents in care homes for various reasons and found finding a good one tricky, but all three were the right decision in the long run.

Have you told your sister that if she doesn’t want to provide care she doesn’t have to? It seems like you expect her to do her one day a week and actually she doesn’t have to even do that and it’s unfair for you to expect her to. Not everyone can cope / manage with caring for a parent and that’s okay. I think you’re at risk of damaging your relationship with your sister here as there’s an undertone of “I’m doing 6 days a week and she’s only doing one” - no one has to do anything. You do it because you choose to, but lots of people in your situation- with an alcoholic parent who has dementia- would just wash their hands of it all and put their parent into care, as your sister is suggesting.

I was in a very similar situation with my own Mum - alcoholism, mental health issues and terminal bowel cancer. I lived 5 mins drive away from her and as her only child everyone seemed to expect me to drop everything and be her carer but I just wasn’t prepared to do that. We had a difficult relationship and I have health issues and a disabled child to care for. I popped over most days and arranged carers 4 times a day but in the end she had to go into care. I just couldn’t and didn’t want to provide the level of care she needed.

If you are happy to keep providing care for your Mum then that’s absolutely your choice but don’t put any pressure or expectation on your sister to do the same.

Surely your DM pre dementia would not have wanted you to put your life on hold indefinitely and be going round there everyday to tend to her just so she could stay at home, increasingly at risk. Would she?!

It is always a difficult decision but you do need to think of yourself too. Your husband and family? need you too. It am not sure if you are working too but 6 days a week is a big commitment and it is obviously going to get harder. As others have said it seems time to have a look at homes and find one you like. Do you ever get a break, go on holiday? What happens then, would she manage or would your sister step up. Perhaps you could find a home you like and she could have a few days respite and see how it goes. Once she is in a home it will be far less worry for you. You will know she is being cared for and you will not have the extra house to run. It will be just a more pleasant relaxed visit.
It is always difficult to just make the decision and unfortunately usually happens when there is a crisis but it would certainly help to be prepared and informed on what is available locally.

Have you had a discussion with your Mum about what she wants?

If your sister is struggling, she needs to be taken out of the equation re a caring role.

What about looking at a personal assistant, someone who is employed by your Mum, would be paid via a third party if you didn’t want the job of that as well as everything else? The PA could support your Mum with going out, doing tasks at home, even just keeping her company listening to some music/watching a film etc.

There is a system justchecking.co.uk/ that you could consider if you are concerned about your Mum and her sleep patterns etc.

Or you could speak to your Mum about some telecare equipment, this doesn’t just consist of a pendant alarm, you can have a variety of additional equipment attached, door sensors, temperature sensors, a bed mat that would trigger a lamp to come on when she gets out of bed in the night.

Re the DoLS, if your Mum does transfer to residential care, she will be assessed by the home manager and if she meets the criteria for a DoLS then the manager will refer to the local authority for this to be completed.

MiL and FiL were adamant that she would be cared for at home, she had mild dementia, they had help, and family support. MiL had a slight fall, more of a sliding to the floor really. We insisted she was taken to hospital for a checkup. Not long after she came home FiL's mental health deteriorated, we found a lovely home for her; her mental health has improved, because she sees people, they do activities, she eats regularly, his has improved because he can see her without having to care for her.

If she’s safe at home and not a danger to herself then I would leave her be for now. Do bear in mind dementia can affect sleep which means she may be up at night confused.
some care homes also run day centres, so that’s a good way of getting them used to somewhere and getting them out for the day.
i have to say we reluctantly did the care home for my grandmother as she just wasn’t safe at home anymore. And it was an absolute blessing. We became her children and grand children again instead of carer. We still went most days. It was a lovely (council) home, she was happy, they had a pub (may or may not be a good thing after the drink comment!!) and entertainment. It was a lovely place and my grandma was so happy there. The staff even came to her funeral.

your sisters clearly struggling with it, it’s hard when your the one doing the work day in day out and then someone chimes in when you probably know the situation better. I don’t think either of you are wrong, good luck navigating it.

Please don't discount the difference in your mother's life & your relationship with her if she goes into a care home.
I kept my Mum at home for as long as possible, for the last 6 weeks I even had a live-in carer with me.
At this point she had lost capacity, no longer recognised her home, in fact because of the uniform of the carer, she thought she was in a home already.
It became extremely obvious that it was no longer working so I did my research of local care homes.
It was the 2nd best decision I have made so far the quality of her life.
The care has been brilliant, Mum blossomed & I was able to return to bring a daughter not a frazzled carer.
The last 5 years have been great - yes she's got worse but seeing her is something I look forward to not dread.
Now I'm making the 1st best decision regarding my mother's quality of life.
She's had a massive stroke & I am about to talk to the stroke consultant about withdrawing the drip & taking her back to the care home for palliative care.

I recently just organized this for my aunt. Things were very chaotic at her own home, my uncle was her carer but was struggling as she was resistant to washing, wouldn't eat, take meds etc. She's been way better & happier since she went in. I think she finds the routine reassuring. She's gained back some weight, she's always clean and properly dressed, and she's definitely calmer.

I know I'd prefer to organize that transition calmly, without an emergency prompting it. My aunts was prompted by a hospital admission, and we were scrambling to find her the right spot. I've found generally that people with dementia don't tend to have slow steady declines, it's more often a sharp drop, usually after hospital admission. I think I'd get on it and start looking for a good place for your Mum. Don't leave it till it's an emergency and you're forced into making a bad choice.

Sympathies, OP. I see the same battle taking place between DH and his sister. In their case it seems likely that the decision about ongoing care will be taken by the hospital MIL has been in relatively long-term (a specialist unit for psychiatric patients). DH sees no realistic alternative to finding a care home if she can't remain where she is, whereas his sister wants to give up her job, move in with her mother and provide 24/7 care. FIL is still living at home, but is neither physically or mentally equipped to provide adequate care. SIL doesn't live nearby, so staying with her parents will obviously have a dramatic impact on her personal life.
DH thinks this is a terrible idea, both for his sister and his mum, but also objects to the halo of martyrdom that has settled on his sister as the 'good' child. He has their mother's best interests at heart too, even if they see things differently.

I've been in this position too.

When I said I couldn't help any more as I was working all hours (I was doing shift work at the time and a lot of colleagues were off) and barely finding time for my own kids my neighbour fairly quickly decided that it wasn't as unthinkable to put her mum into a residential setting as she'd previously believed. In fact she moved within a couple of months.

We put nan into sheltered accommodation she had dementia she didn't last the year she had to put her own mother into a care home and was scared of having the same thing happen to her so sheltered was a good halfway point for her

Does your sister also have a problem with alcohol? This is a difficult situation for both of you but that sounds like harassment.

Would your sister and mother agree for you to be the PoA, buy in some extra care visits and your sister can relinquish the responsibility? (I'm not recommended this but sister's response might be interesting). Otherwise task sister with looking for potential homes, doing the legwork etc.

Key points for me would be what does your mother want (she still has some capacity) then consider recommendations from both the social worker and the good carer, particularly the latter. I agree with PP that good carers will often spot when its time to make the transition. They may suggest an additional visit each day or something else to let her stay home for longer or they may say to grit your teeth because its time to move from a position of objectivity rather than emotional distress.

I’m so sorry. I hope it goes smoothly

I completely understand where you are coming from.
My siblings and I don't see eye to eye on mums care and it can be very difficult.
I would say whilst your mum has some capacity try to talk to her about her wishes.
I would also start looking in advance as you don't know what could precipitate an emergency admission.
You say you are currently providing the bulk of the support what happens if something happens to you?
I was the one who pushed for mum to go into a care home. However I'm also the one that does the bulk of supporting her even though I live a long way away and my siblings are closer.
Our decision was somewhat made for us by the disruption of the pandemic. Disruption to her carers and activities made her increasingly confused and she would go out looking for company and getting lost. She was already needing a high level of support at home and the social worker agreed to a respite placement after a week of having to search for her every day.
Luckily I had visited lots of homes prior to this and knew all the local ones so when we were offered a respite and then permanent place in a great local place I jumped at it.
It's been good for her, her dementia has progressed but she's no longer scared and lonely as she has company 24/7.
Her home is lovely, not too fancy but really great staff and even in the worst of the pandemic the staff were good at maintaining as much contact as possible.
Some of my siblings have been ideologically against her being in a care home but they don't offer a viable alternative. Mum is settled and generally happy. I know we have been lucky with her home but not all homes are rubbish.
I think you need to see how your mum feels, work out a plan for what happens over time and if situations change because it's all very well saying she's ok now but thinks often change quickly and without notice and it's much easier if you've thought about it and planned up front.

I got another text this morning but I don't have the emotional wherewithall to engage with it. Mum was actually discharged from Social Services only recently but I have asked the local dementia advisory service for some advice on how to navigate this situation whereby siblings can't agree

OP, there's a lot of good advice in the posts above. Read the posts carefully and have a good think before deciding how to proceed. Be prepared for things to change. They rarely stay the same for long in someone with dementia.

I have been through a very similar situation and I know exactly how difficult and exhausting it is. If your mum still has some capacity, what does she want?

Why on Earth have they discharged her? I mean this kindly, it’s not like she’s going to get better? Fair enough file her away from the immediate inbox, but she should be reviewed regularly for more support. Not have to start the whole process again when it’s an emergency.
my experience of adult social services is that they are great but you really have to push and push to get support. Which frankly, a lot of carers haven’t the energy for.

When I have asked her, she says she doesn't want to go in a home

My grandmother didn’t want to either. She was scared we would dump her there and it was like one of those panorama specials. The reality (for us) was very different, it was a lovely place. Mine went in for emergency respite and they assessed her as not fit to go home.
She never asked when she was going home.

Does she have an understanding of residential care? Would she consider going for some day care at a home as a way of introducing her to a placement?

@gandalf456
When we can't agree on Health and care stuff, we have to go through a process called Best Interests meetings.
They have a formal format and are lead by social services, they seek input from mums GP in advance and usually involve mums social worker, a representative of the care team (care manager) and us siblings.
We do them over zoom because we started having to do them in the pandemic and then realised it was the best way to get everyone to the meeting.
Written representation can also be given if somebody can't make it.
Basically everyone discusses the issue, their solutions and then a decision is made taking all of that into account. It's a bit of a process but I also find it makes some of the sibling ranting and raving go away as they have to do it in front of somebody who isn't family.
We've had them for mums care, renewal of her DOLs, access to medication and vaccinations - it's exhausting but there are 4 of us and some have some extreme views. It also gives us perspective and allows us to hear what the professionals think.
One sibling got a private OT assessment done of mum, which was great and very thorough, she spent some real time assessing mums needs and discussed progression although he then decided to ignore it because it didn't agree with him 🙄
However we presented it at the best interests meeting as another independent viewpoint.