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?

She does. The dementia care people suggested a day centre hut Mum refused

I agree with this. Your mum has a deteriorating condition. I wouldn’t let it reach a crisis point before doing anything. It is a very hard decision all round but your mum being safe and cared for is priority. It’s just you and you sister have different views on how to do that. For you, you need to work out if you can visit more as your mum needs more help. 💐

I would keep her in her home for as long as possible. Could you increase Carer’s to 4 per day?

I strongly recommend starting the process by viewing what's available in your area, there's likely a waiting list too. You need to work out funding as well, adult social services and/or nhs continuing care may be useful

Also, if there is a conflict between you all, your Mum is entitled to an independent advocate.
Your local authority will probably
have a contact with an advocacy service.

Thank you, I'll look into that

@wonkylegs I am interested in the Best Interests meetings. How do I go about this, please?

Sending you lots of strength. It sounds very stressful, overwhelming and emotional.

Re the Best Interest meeting. These are part of the Mental Capacity Act legislation and process.
A capacity assessment is carried out by a social worker regarding a specific decision. So the decision here would be where does your Mum need to have her care and support needs met.

The assessment consists of four elements, and the assessor will use the information gathered from your Mum in the assessment to deem that your Mum either does or does not have capacity.

If it is deemed that she lacks capacity, then a Best Interest meeting will be arranged. Here, all options, the risks, benefits of each option will be discussed.

It’s important to note that if the decision is made for your Mum to move to residential care and she refuses to go, the Mental Capacity act does not cover the forceful removal of a person from their home. The only time that would happen is if, during a Mental Health act assessment she is shown to be a serious risk to her own safety.

You sound like a lovely daughter but I imagine all you're doing for your mum must get pretty tiring. If your mum went into Care, you can let go of some of that responsibility. You no longer have to run her house, oversee carers etc, you just get to visit your mum and be a daughter.

Having said that, one of my relatives has dementia and has some capacity but it's getting increasingly more difficult. She is living at home with daily support from her immediate family and the siblings have installed a camera upstairs and downstairs so they can check in on her if they need to. It's a tough decision whatever you decide! Do you know what your mum would have wanted?

When Mum broke her hip and was in hospital presumably she had zero alcohol. You say that you're weaning her off slowly. How much is she drinking daily now?

Has mum had any input from her g.p or district nurses regarding her alcohol intake. If she was drinking a lot she may need extra medication,vitamins and supplement food and drinks if she is not eating much now.

I agree with this sadly. Sorry you're going through this Op as it's horrible.

It's so sad. We as neighbours did our best with a lady. Eventually we all got compassion fatigue her alarm kept going off because of falls. Both sons lived in London we're in Wales. One neighbour ex NHS contacted son said she has to get carers. They went from twice a day to four times a day. It quickly become not enough she was having falls when they weren't there, losing weight, confused. So we had to answer alarm get her up from the floor, shower her, or call ambulance. Hospitalised twice. The second time with a broken hip. Finally she was long stay started putting on weight. She then refused to go home.

Her sons didn't organise a home. She died in hospital. Which was avoidable if plans had been in place. Her sons had POA

Gp has prescribed vitamins, yes.

Been told by council that we can't automatically place Mum in her home against her will just on the basis of dementia diagnosis. Everyone aware of alcohol problems

There is a drop in service this week by council. Might pop in to that.

Also contacted legal person re what poa covers.

To the person way up, its a hell of an ego trip with huge cost to personal life, family relationships and children on top of ft job

It's so difficult OP and sounds like you are doing an amazing job. Ultimately you also need to think about yourself as well and how sustainable this is for everyone. I say this having experienced doing 24 care for my mum over the summer with my sister, brother and dad to try to keep my mum at home. But we are still coping with the impact it had on us.

Having been through something similar with my mum, though it was cancer rather than dementia, I would say being as proactive as possible is definitely the way forwards.

My parents didn't want to have the difficult meeting/conversation with the GP about arrangements for palliative care and mum's wishes until as late as possible which meant by the time we did it and got her wishes recorded, eg a DNR, she was starting to lose mental capacity.

The GP really led it for us but adult social care were useful too and could offer adjustments at home if you haven't had anything from them. It was too late for us by the time we contacted them.

All the best - such a difficult time

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Agree with Dint about this.

OP, I suspect the reason your thread has so many posts in a short space of time is that people recognise the scenario.
I have several sets of friends whose siblings are absolutely not on the same page. Two brothers, one sister. The sister wants DM to go to care home before she is too ill, The brothers are 'ashamed' that this is even a suggestion and want the sister to step up and do more. (Sister already there four days a week.) Brother and sister. Sister is in pieces after coping for years but no longer has the energy. Brother doesn't want care home fees to diminish his inheritance. Two sisters. One has made promise to DM that she will never go into a care home and doesn't want to go back on her word. Other sister overwhelmed by the stress of daily visits and scared of finding DM at the foot of stairs.

In at least two of these instances I don't think the siblings will stay in touch after parent dies.

I have a suspicion that even though you and your DSis don't agree, your DM won't be heading to the carehome anytime soon as DM can't be forced. My MIL with increasing dementia, spent very many months (over a year) a prisoner upstairs in her home, unable to get to the kitchen, as she refused to try to go downstairs. Eventually her failing mobility hastened her into a care home as she couldn't get out of bed.

Even the closest of siblings who agree would struggle with heightened stress and emotions. A DM who has failed to future proof in any way or whose alcoholism has impacted on the wider family could makes your circumstances even harder than most.

From experience, I've found a stay in hospital to be very hard on my relative. But once settled in a care home, after the initial settling in period. They became a lot more of their normal self.

Is residential care an inevitability? If so id start looking now, we let it get to critical levels before my dad agreed to move and this put tremendous pressure on us and my sister, who really did bare the brunt of the daily visits like you are. We all have eachother the right to step back, because I will openly admit I struggled with the "care" visits we were doing as children. Some people are better than others at it and that's ok, you are your parents children not their carer. Once he was moved in a care home the relief from the worry and pressure from the daily rota was immense. I don't think you can hold your sister up to the standards you have (very honourably!) set. Work out what is best for you all, and find the balance between quality and life for you ALL. Massive handhold because I've been though it and it's awful

I watched a friend of mine going through similar when her mother got Alzheimer's. My friend was told by her doctor that her mother would need to be in care home in time due to her needs
Her doctor said to her that she need to look at care homes in the area and advised her of the better ones. He said your better doing this now, have her name down in a few places and in time you get her in but not to wait until a big emergency you may have very little choice.

My friend realised that she needed more care but was reluctant to put her in a home but I said to them you did your best with her but she needs more help now. The care home she went to was nice, the staff were good and my friend could go and see her mother at any time. Her mother was happy their until she died a few years later.
My friend did not realize the strain she was under until after her mother went into the home. She could be her daughter not her career and she had her own life back.

At this stage you going to your mother's 6 days a week and your sister one day. What happens if you get a bad cold, flu or COVID this winter? You not going to be able to go to her. Because your doing so much to keep her at home your missing out on family time and just have a day a week off.

I think you need to chat to your sister and tell her that you don't want to put mum into a home yet. Arrange a meeting with your mother's doctor and ask them what are the good care homes in the area. Your and your sister should look at a few and decide where is the best place and put her name down. It could take a bit time to get a place and sort out the paperwork ect. It not an easy situation to be in.

Fwiw I think you are right, I’d take some small risk on safety, slightly less washed for what was/is her wishes. However your sister is not unreasonable to want to not have an ongoing worry about her safety, now your Mum is so vulnerable.

That sounds really difficult OP

I understand your frustration about doing so much more than your sister, but it sounds like she has reached her limits. I know it doesn’t seem fair, but you can’t control how much she has to give and neither of you are obligated to help your mum stay at home longer.

Realistically, if you want your mum to stay at home, I think you need to relieve your sister of any mental burden and tell her you’ll deal with improving the care she receives and the logistics. Otherwise, you need to agree to a care home.

If your mum will end up in a care home anyway, it might be kinder to make the love know before she gets more confused.

Good luck with everything.