Page 4 | Sister and I can't agree regarding Mum's care

gandalf456 · 2022-10-30T22:37:00+00:00

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?

MereDintofPandiculation · 31/10/2022 08:46

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?

JubileeTrifle · 31/10/2022 08:43

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.

femfemlicious · 31/10/2022 08:38

gandalf456 · 31/10/2022 07:04

@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.

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!

OldReliable · 31/10/2022 08:21

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.

Sugarplumfairy65 · 31/10/2022 08:21

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

cansu · 31/10/2022 07:58

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?

Original poster

gandalf456 · 31/10/2022 07:58

She would be self funding, yes

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LadyGardenersQuestionTime · 31/10/2022 07:55

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.

Artygirlghost · 31/10/2022 07:46

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.

lifeinthehills · 31/10/2022 07:40

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.

ChubbyMorticia · 31/10/2022 07:24

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.

Original poster

gandalf456 · 31/10/2022 07:04

@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.

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DoodlePug · 31/10/2022 01:32

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.

Aquamarine1029 · 31/10/2022 00:58

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.

DPotter · 31/10/2022 00:38

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.

janeseymour78 · 31/10/2022 00:32

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

iwantavuvezela · 31/10/2022 00:29

would you giving your sister a time frame help e.g. lets keep mum at home for now and review after Christmas - and then say you will review every four months or so - perhaps that will allow her to think/ know that there is scope for the situation to change and opportunities to speak about it in a structured way - and for you to have some space not to speak about it every week.

Original poster

gandalf456 · 31/10/2022 00:16

Thanks @moonypadfootprongs I think I will maybe have a chat to the agency. The diary idea is a good idea

@caringcarer thanks, that is what I am doing with the alcohol. I have been told that I would need to wean her off before going into a home anyway or she would have to detox in a hospital.

We have requested the carer she likes to come in more frequently and the agency has been helpful in this. The cleaner idea is not a bad one either

As I said, I am really confused as I really thought Mum was doing better since we'd done a few changes.

To be honest, the worst thing about it is not the deterioration with Mum, it is the pressure from my sister to agree to putting Mum in a home. This evening, I had just got in from work and the phone started and then when I said I needed time to think, I got a barrage of texts and so did my husband. It was only when I requested her not to contact me anymore as I wanted to spend some time with the family that she relented until the next time and the time after that until I end up agreeing to do something just to keep the peace. I couldn't even get a word in tonight as she was talking and shouting over me and pooh poohing every suggestion I came up with. Honestly, I think the whole thing is complicated by our poor relationship, which is deteriorating rapidly by the day. I do think I would cope better if it were just me doing this alone.

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moonypadfootprongs · 31/10/2022 00:05

gandalf456 · 30/10/2022 23:40

@moonypadfootprongs yes, she can call us if she needs help and, yes, she has a fall alarm. She has good neighbours who keep an eye on her, too.

My sister's concerns are her safety, although Mum hasn't fallen since we have taken more control over the alcohol. She is not eating well and is not particularly clean. Some of the carers who come in aren't very proactive in her care - e.g. if she refuses food, they won't put any out for later or won't attempt to wash or change her and they do the bare minimum. I wanted to raise this with the carers but my sister just blew up and said home care isn't working, which she has said all along and has wanted her to go into a home for ages.

One carer is really good and has a way of persuading her to do anything. My sister seems to think she would be better cared for in a home but I also think the carers would vary in their abilities (as they do with the agency), although I believe she would be more likely to comply with washing and eating purely due to the different environment but she is a fiercy independent lady and can see her resisting. If you asked her before and after her diagnosis, it would be a definite no to going in a home.

@gandalf456 I have been a carer for 13 years now. I've worked in all different settings and now run my own home care business.
From my experience I would always keep someone in their own home for as long as they were happy and safe. If your not happy with the carers then look for alternatives.
I would also have very clear expectations for the care staff so they know what you want. Don't rely on people using their initiative some people will others just don't.
So for example the situation with food you literally need to have written instructions that they are to make and leave out sandwiches etc if she doesn't eat. Having a list of jobs that people have to follow keeps everyone on the same page then.
Having a diary in the house for the carers to write in what they have done and any concerns etc is really helpful.

caringcarer · 31/10/2022 00:05

Emotionally some people can cope better with seeing their parent upset more than others. It is hard on you if you do 6 days a week and your sister struggles to do one day. I can understand your husband being annoyed. But if going to see your Mum upsets your sister and is causing her own MH to suffer see her side too. One tip, you could water down your Mum's alcohol and wean her off of it gradually. Eg if she has vodka tip 25 percent away and add water, so even if she has a few drinks when no one there she will be having less alcohol but may not realise it. Could you offer carer she likes most more hours? Could she come three times a day? Alternatively I know a lady who has carers twice a day to help her get her up and help go to bed but has a cleaner for 1 1/2 hours a day who also makes her a hot drink at lunch time or will warm her through some hot soup. She has a man who comes to do garden once a week for an hour or two. She does not realise but he is paid to go in and have a cup of tea with her and a slice of cake after he has finished the garden, too. It is good for her to have different people to talk to. All of this is still considerably cheaper than being in a care home full time plus she has her two cats she absolutely dotes on. She could not take her cats to care home with her. This lady has her DD visit every weekend as lives a couple of hours away but facetime each evening and a dgd visits once as week as at nearby Uni. Could you get your Mum more additional outside help/care? This could mean 1 day a week you could just do a facetime call. The cleaner helps the lady I know with facetime.

Coyoacan · 30/10/2022 23:51

My aunt was in a care home that was especially designed for Alzheimers' patients and my cousin says she was very well cared for and happy there.

BannerofHeaven · 30/10/2022 23:45

I was a 'good neighbour'. The reality of it was I came under increasing pressure to do more and more looking out for my neighbour and started to resent her family for not seeing what I thought was obvious, the situation was no longer safe or working and my neighbour needed residential care.

Original poster

gandalf456 · 30/10/2022 23:42

@HeddaGarbled I've done this to an extent but it is not something that is working long term. Likely, tomorrow, she will have calmed down until the next visit next weekend. My DH is moaning that I am doing all the running around but, tbh, I'd rather do that than face the hassle if my sister does anything and, yes, I do find it very hard to contain my resentment of that fact.

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Original poster

gandalf456 · 30/10/2022 23:40

@moonypadfootprongs yes, she can call us if she needs help and, yes, she has a fall alarm. She has good neighbours who keep an eye on her, too.

My sister's concerns are her safety, although Mum hasn't fallen since we have taken more control over the alcohol. She is not eating well and is not particularly clean. Some of the carers who come in aren't very proactive in her care - e.g. if she refuses food, they won't put any out for later or won't attempt to wash or change her and they do the bare minimum. I wanted to raise this with the carers but my sister just blew up and said home care isn't working, which she has said all along and has wanted her to go into a home for ages.

One carer is really good and has a way of persuading her to do anything. My sister seems to think she would be better cared for in a home but I also think the carers would vary in their abilities (as they do with the agency), although I believe she would be more likely to comply with washing and eating purely due to the different environment but she is a fiercy independent lady and can see her resisting. If you asked her before and after her diagnosis, it would be a definite no to going in a home.

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HeddaGarbled · 30/10/2022 23:33

How about just agreeing with your sister (or doing that non-committal ‘uh-huh’, ‘mmm’ thing) but not taking any action? Just because you’re invited to an argument, doesn’t mean you have to attend.