Would it be easier if Mum just went into a home?

[oapcarer]

Bit of background. Mum is 79, lives alone and has dementia. Recently, she had a hip replacement and spent a long time in hospital. This has definitely made her dementia worse. I phoned a local advisory service who reassured us that this is likely to improve and will visit to advise next week.

At the moment, we have carers come in 4x a day to administer meds and meals and they say she is not cooperating, which she did before she went into hospital but, at that stage, she only had them in once a day.

My sister and I are both local, although we are both struggling to juggle both family, jobs and Mum's needs. Mum has always been needy since Dad died over 10 years ago but, obviously, dementia has made it worse. Because my work is part time, I have taken the bulk of the mental load re my mother but, after a hospital stay followed by a dementia diagnosis, I have had to defer to my sister more and more, which is causing friction as she is a sole trader and doesn't have time to pitch in with appointments, phone calls, chats with carers. I increased my hours a couple of years ago out of financial necessity (2 teenagers, one at university locally). I now work 5 days per week but it is 6 hr days and it's shift work so I am around 2-3 half days in the week .

I have just got off the phone with my sister about Mum going into a home and she feels it would be easier on us in the long run, which may be the case but we will have a huge job ahead of us in cleaning the house and sorting out the finances as we will be self-funding. I am having a few struggles with the kids (normal teenage stuff, mostly) and, to be honest, I will struggle to fit the house clearance in. My sister insists she will help but, to be fair, if she is short on time now, it is going to fall on me. Also, just because she is in the home, we will still have to visit, liaise with carers etc, won't we? Will it really be less work?

Anyone been through the same?

@ChoiceMummy caring for your relatives seems to have made you bitter and unkind, which is a shame for you.

OP, as a home is inevitable it may be better to start the ball rolling now before your hand is forced by a crisis. I know how tough it is, good luck and remember to take care of yourself x

she feels it would be easier on us in the long run, which may be the case but we will have a huge job ahead of us in cleaning the house and sorting out the finances as we will be self-funding. I am having a few struggles with the kids (normal teenage stuff, mostly) and, to be honest, I will struggle to fit the house clearance in. My sister insists she will help but, to be fair, if she is short on time now, it is going to fall on me. Also, just because she is in the home, we will still have to visit, liaise with carers etc, won't we? Will it really be less work
I think @ChoiceMummy has a point.
This is very much all about the sisters, and there’s not a single part of the post that considers what is best for mum.
OP, I did post earlier asking what your mum actually wants to do, you haven’t responded. If SHE WANTS to go into a home, your main concern should be helping her to find somewhere she’s going to like. Not who’s going to clear out her home when she’s there. I think you’ve got your priorities wrong. If she’s got dementia, there’s more pressing things that will need to be done before her home can even go in the market. For instance, who will have the legal wherewithal to act on her behalf?

[quote HeadNorth]@ChoiceMummy caring for your relatives seems to have made you bitter and unkind, which is a shame for you.

OP, as a home is inevitable it may be better to start the ball rolling now before your hand is forced by a crisis. I know how tough it is, good luck and remember to take care of yourself x[/quote]
By bitter and unkind I think you meant honest and compassionate

Yes, it will be less work once you've got it all sorted. Are there any other family members who could help with the house clearance?

@ChoiceMummy its all very well and good looking after people at home where possible but I have lost count of the amount of people who I have cared for who have set fire to their homes or roamed the street in their nighties due to dementia. Or been neglected by home carers due to them having too many care calls or being missed off the rota.

I found it was better because of the worry. I knew she was safe, I knew she had food, warmth, I knew someone would be with her quickly if she fell. Don't underestimate the mental load.

One important factor is that you shouldn't have to actually sell the house before she can take up a place in a home, even if self funding. Speak to finance in your local authority's adult social services and ask about deferred payments. This is where you agree and sign to say that the council will pay until the house is sold (assuming that's how her care will be funded) and then you pay them back from the proceeds. It takes the time pressure away from having to sell quickly.

If your mum is now in need of 4 carer visits a day, that's the maximum and she is edging close to the need for full time care, so I would agree that a residential care home is best. Finding a good place is the challenge. Start looking. Ask people you know who've done this to recommend places. Get the deferred payment agreement in place so you can move quickly when a place comes up.

Yes. When my mum went into a care home (after a few years of being at home with carers in four times a day), it was better for her as she wasn’t sitting at home on her own apart from the carers visits. It was also much safer (the trigger was the morning carer arriving to discover mum wasn’t home - she was found walking down the main road fifteen minutes away ).

It’s also easier for you as you’re not dealing with all the household admin and repairs, and medical issues/ appointments. You can just be a daughter again, not a carer.

I agree, sadly, that your mum will only get worse. Better to get a care home arranged now that after another, worse, crisis.

@ChoiceMummy

Yet plenty of people do work full time and care full time as well as maintain family responsibilities.

So yes, it's difficult, but that's what you do for family and people that we love!

There are two daughters as well as partners presumably, so 4 people that have no doubt benefitted from all that their mother offered and gave them over the years, yet here in her time of need/support the biggest concern is who will clear out the house!

Any frailty is hard going,dementia or not added to the mix. Something being hard doesn't mean that we shouldn't try!

I imagine that the mother's feelings of abandonment have only added to her confusion sadly.

Yes, maybe you would want to do that if you've always had a great relationship with your Mother but many of us haven't. Many of us don't want to care for someone 24/7 who didn't take particularly good care of us. Not all of us are as saintly as you to rise above all of that.

Your caring and empathy clearly doesn't extend to the Op.

Yes it will undoubtedly be easier for you if she goes in a home

But what does she want herself? Will she agree to it? People don't actually lose all their rights to de use about their life just because they are old or even because they have dementia. It is not legally very easy to force someone into a care home against their will and decent care homes will not take people who are likely to be very unhappy and try to abscond.

If she still has capacity and she wants to stay at home then she stays and it is not up to you or anyone else.
If she lacks capacity AND you have both health and welfare and financial LPAs which are registered then you can place her in a care home even against her will although you still have to find one that would take her and transport her there both of which can be very difficult if it's against the persons will.
If you have no LPA you should try to get them if she still has capacity to make one.

Just wanted to add my bit as just gone through similar, though my mother decided she wanted to go into a home and doesnt have diagnosed dementia. V frail, v confused and was not engaging with support that we attempted to organise.

The practicalities are the easy bit - just take out what you need/ want or she wants, keep a few boxes in storage somewhere if she wants more stuff than can take. The admin side is heavy to start with but when done much easier than the rest.

Finding the right home takes a lot of time visiting places - so different even if self funding, if possible take her too. Have a back up - if it gets to the wire and they get covid they close the home to new admissions. Happened to us- had to delay completion on her house was super stressful.

Set your boundaries early on - how often you want to go in, who will go etc. The lists of things that she wants doing probably wont stop - I need this and I need it now.

The loss of independence is huge but if she is ok just pottering, she will like it - it might just be a hard transition.

I feel utterly exhausted and think its is probably that she has been so demanding and taking up so much head space that am taking a while to recover.

@ChoiceMummy I’m sorry but you make this sound like it’s so easy. Depending on the person dementia can alter them and their behaviours drastically. Once they hit a certain point they can’t be left on their own…at all. My Gran shattered a shower glass door…told us it was lightening. She had no clue what had really happened. One day she could shower then suddenly she couldn’t. They cannot be there all the time to ensure she is safe and well cared for. Everyone’s situation is different and it certainly doesn’t mean they don’t love someone enough because they can’t fit in care on top of work and children and anything else. Utterly ridiculous trying to guilt trip people.

My FIL would still be alive if he had gone into residential care at the appropriate time.

I would put your dm in. Dementia plus 4x daily carers with whom she does not cooperate makes it an obvious choice imo.

I just wanted to add that there are companies who do home clearance. Just take out the stuff you want to keep and they will do the rest.

Yes I think ultimately it would be easier but you may not have much choice - if the carers are telling you that the current setup isn't working. Have you had a talk with social services or are they not involved at all?

My mother has been on 1:1 observation since her stroke because of her cognitive and behavioural changes so obviously working full time and caring for her wouldn't be a thing in her case and that's the point - it's very individual. The home she is in is very specialist and very good, it's a terrible situation in itself but the place isn't.

The home we originally chose for Mum didn't do charge back - they would only take her if she had 2 years' fees in cash in the bank. Possibly they had spotted that both she and we were going to be a nightmare lol. So I would just make sure that you talk funding early. The hard sell from nursing homes can be pretty hard.

It's better to do it sooner rather than later imo, people often leave it until falls start, other accidents and so on

Many people can't look after their elderly relatives full time themselves and there comes a time when carers coming in isn't enough. Then you are racing round trying to find a suitable care home that has a bed when the relative should all ready be having full time care.

We have just had to find a care home for my grandad, different situation as he has terminal cancer and was living with my mum. After 3 falls at night and being taken back to hospital we were told a care home is best, my poor mum has been struggling too even with carers coming in 4 times a day. He needs people around at night now its in his brain and causing confusion.

Obviously if your mum has capacity and doesn't agree then it's a different matter but if she has a SW I'd talk to them and start looking into homes so you are prepared for when the time comes

We only had a choice of 2 in the end after checking cqc results and ringing around trying to find beds.

He was due to be moved from hospital this week but unfortunately him and the rest of the ward have covid, we wish we'd done it all sooner as ge never wanted to die at home but he deteriorated quite quickly for you

It will be easier for you & will more than likely be better for her.

The relief of knowing that your parent is warm, fed, cared for & that there is someone there for 24hrs is immense.

It sounds like you will sell the house to self fund. It's worth thinking about how long those funds would last. She will still need clothes, shoes, dental care etc, buy gifts, hairdresser etc. as well. It's easy to assume that somebody won't live long enough for this to be an issue but it's worth working out whether the home you choose would be funded by social care when her money runs out. You don't want to be in the position of having to move her.

And yes the first question is does she have capacity and the second question is regardless of capacity, what are her wishes, what's important to her?

Best for mum IS being in a home.

She can’t spend the rest of her life alone in a house she doesn’t recognise, incurably insane/incontinent/immobile and frightened.

Try and think of the geriatric frail as the long-term severely mentally and physically disabled, rather than ‘old’.

Extreme disability is no joke and needs to be cared for with more than sentimentality or untrained family efforts.

@Supersimkin2 Extreme disability is no joke and needs to be cared for with more than sentimentality or untrained family efforts.

This needs to be printed in large letters and learned and understood by everyone from doctors and social workers through to well meaning neighbours and friends on social media. Caring for an incontinent adult who needs your help with just about every aspect of daily living while denying that you do anything to help at all is not a "joy and a privilege". It is exhausting, frustrating and soul destroying - and that is when the person you are caring for is someone you love and who loves you. How others have survived when they have poor relationships with their families I can not imagine.

We left it too long with my MIL. The decision was finally made for us when the police picked her up when they came across her wandering two miles from home at 5am one morning. It horrifies me to think what might have happened had they not found her. They took her to hospital, and from their she went into respite care which became permanent.

It will be easier on you all if your DM is cared for in a care home I believe.

As pp have said, dementia only goes one way, there is no room to be sentimental about that, and supporting her as she moves now while she can settle in will make her experience of the home better in the future. People often get moved into care suddently in a crisis and it's better if you can do it before. If your DM has dementia and / or can't sustain her life on her own then the simple fact of life is that she will eventually have decisions made on her behalf, if not by you then by adult social care and healthcare providers.

There is nothing wrong with planning and doing this, it's a life stage and inevitable once someone has dementia or becomes too frail to look after themselves. If you are attorneys (with LPoA) I think you will need to step up and find the time and space to clear the house etc. or pay someone else to do it. If you aren't attorneys and she either doesn't have capacity on this or is opposed, you'll need to ask adult social care, liason at your Mum's GP, what their recommendation is because they will need to take decisions, and you may need to go through a longer process to be able to manage her affairs. If your DM says she would like to go, that is probably something you can just organise on her behalf with her permission.

My very elderly DM is in in a care home, she has mild dementia and Parkinson's. She is physically and socially a LOT better off there as well as it having taken an unsustainable burden off me.

Whoa, how people get the wrong end up the stick here! I don't owe anyone (Choicemummy et al) any answers - only my own conscience.

My relationship with Mum was always OK but we have become very close in the last 10 years. The carers are only there to help. I am still there frequently, if not more so than before.

Conversely, my sister has found her relationship with Mum more difficult and is lucky to pop in once a week. Sometimes she sends her DH instead. I wouldn't take a genius to work out that this has affected our sibling relationship, too, although I understand she has her own problems and can't handle Mum's deterioration at all.

I partly believe this is why we see things differently. To me, Mum is still Mum underneath the condition but is suffering physically at home due to unhealthy lifestyle choices. I believe her physical health would really benefit from residential care but I know fully that she will become delusional in that environment, which is what happened when she was in hospital, and will get aggressive, try to escape, disturb other residents. At home, her dementia is more stable.

The reason why I am stressing about the house is because it will mostly fall in me to sort out, if how things are today are anything to go by.

And the reason why I am asking the question is because I still think, at this point, she is better at home but then I am more emotionally involved and, to be honest, do feel pressured by other family members.

And, to answer the other question, we do have POA