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?

One of you needs to be power of attorney asap
fir finance and health, your mum needs to sign this firm while she as capacity
without this you will fall in the future with l oh ts of problems

We do both have this but, unfortunately, this doesn't help us agree :(

I suppose this hinges on what you mean by ‘a little longer’.

If it is inevitable that she will need to go into a home, perhaps it is worth starting that process sooner rather than later?

In all honesty I agree with your sister;the thing that swayed me was the alcohol issue;it could aggravate the dementia;if she's in a home they can block the alcohol.

If you want to keep her at home longer fair enough but if that's the case your sister had the right to step back in relation of care.

I heard many people advise not waiting for dementia to get alerts before moving to a home as then it's harder to adapt.
Homes are much calmer places than hospital wards where sleep is often disrupted and there's lots of comings and goings.

Sorry, that should read worse not alerts .

Does your mum have capacity to make a decision about this herself?

If your mother is safe at home and that is what she wants then she should stay. Just because someone has dementia doesn't mean that they don't have capacity to make their own decisions. Moves of any kind, such as when in the unfamiliar environment of a hospital, often lead to a deterioration in their condition. Its only when someone is unsafe, as in wandering out into the street and getting lost or doing dangerous things indoors such as leaving cooking burning that the decision would need to be made for them. Just as many people come into hospital who have fallen in care homes than from their own home, just incase your sister uses that argument!

She is considered by health professionals as 'having some capacity', although we have looked around a couple of homes who said they would only need to write a Deprivation of Liberty statement that it is in 'Mum's best interests' to be in a care home.

She is not very mobile and doesn't go out although she has had a few falls but hasn't had any since I have been rationing the alcohol, which is not that hard to do as she has it delivered - she doesn't go out to the shop anymore.

She doesn't attempt to cook either as she has lost the will to eat but the carers prepare food for her, although she is quite resistant to eating, washing etc

Just be aware that if you wait until your mum ‘needs’ a care home you may struggle to get a place. I’ve just put my mum in, she was being cared for by my dad. I rang around about 20, 2 had space. I had to take a space in one I liked immediately. Had I waited until my dad had a heart attack (on the cards), she would have to go wherever-so possibly somewhere shit with space. I would start looking now, many charge top up fees that we simply couldn’t afford. You don’t have to do it now, you might be editing a year for a space in somewhere you like but doing nothing is not an option.

The home don’t do the dol-a social worker does and they visit to check it’s the right decision.

Thanks, superram, so it's worth getting on a list then?

I would have thought she would cope with the home better if she went in when she wasn't too confused.

Could your mum remain at home without your sister going in one day a week? It sounds like she is finding it very difficult, is she just going to visit or is there a level of care or housekeeping etc involved? Maybe you could take over that day so that your sister is only visiting your mum when it suits her rather than feeling responsible for her care?

It does sounds however like your mum going into a home is inevitable. Maybe it’s sensible to at least start looking into the options now and seeing what’s out there. I agree with others it may be better for her to move to the home whilst she still has some capacity and understanding rather than waiting too long down the line. Moving her wont necessarilly be a quick process and some homes can have waiting lists so it might at least be worth getting a head start.

I would say if she isn't at risk at home and is happy there then she is probably ok to remain at home.
Does she have ability to call for help if she needs it? Does she have a fall alarm? Would someone hear if her fire alarm went off? Would she know what to do in an emergency?

What are your sisters concerns precisely? Would those concerns be alleviated with increased care at home. 4x a day care would be standard I think. Or perhaps look be in care as an option if she has a spare bedroom. Both options probably cheaper than a good care or nursing home.

Most importantly what's your mums view on it?

I have thought of that, although, to be honest, what is causing my resentment. I am going in 6 days a week and it isn't easy to find the time to do that and sometimes I am tired and don't always find it easy if Mum is having a bad day.

But, by and large, I am just getting on with it and then my sister does her one day a week and complains to me bitterly about it - as if she is doing everything and this is all my fault because 'I won't put her in a home'. Even if Mum rings her, she gets upset. I am having a few health issues, too. We are both in our fifties and age is a factor in this, too

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.

@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.

@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.

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.

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.

@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.

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.

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.

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.