Frustrated and dont know how to help

[Ilikewinter]

I think I just need to rant! MIL is housebound and has been since a stroke 3 years ago, lives in a 3 bed terraced house that is completely unsuitable for her (in my opinion, which i keep to myself!), she lives in one room as shes unable to manage the very steep stairs, shes refused to move several times.
Shes been ill since early December, didnt seem like anything serious at the start but is now confused and very lethargic, doctors have tried on 3 occasions to get her into hospital but shes refusing to go due to COVID, but shes also saying she wants to die, is eating very little and is dehydrated.
Doctors have taken more bloods today and said she cant be left alone so DH is now sleeping there, however this isnt a long term solution and im getting increasingly annoyed that she wont go into hospital. She already has carers in 4 times a day. Shes not taking all of her prescribed meds and hasnt been out of bed for weeks now apart to use a commode. DH now wants her to live with us short term, but it wont be short term and i dont want her here. I know we can't force her into hospital but she needs to go and then move to a sheltered accomodation when shes out, but shes just adament shes not going anywhere. Mean while DH is spending the night sleeping in her armchair all because shes being stubborn. Arrgghhhh.

What has the Dr said about her mental health? Has anyone suggested sectioning if she's not able to care for herself but refusing to go to hospital?

I'm not sure how it works or if it's possible but my Colleague's DM got sectioned in similar circumstances and received very good care.

TBH this doesn’t sound like a sheltered accommodation scenario. It sounds more like nursing home time.

If she carries on resisting hospital investigation & treatment, she is unlikely to make much of a recovery if any at all. Even with treatment, this may be how she is now.

From my experience of working in elderly care (20 years, both community & hospital), I’m guessing she knows deep down that if she does go to hospital now she’s unlikely to come back home.

Look into Deprivation of Liberty (part of the mental health act) but I think it does require her to lack capacity. But capacity can be gained/lost depending on illness.
Does she have a social worker? If not, I suggest you look into it as they may be able to help with support.

The doctor just said that they cant force her into hospital, she promises to eat and drink more, which she does for a while. She has said she wont come out of hospital again if she goes and I do understand her fears, but a short stay could quickly resolve her illness - im not even sure what that is to be honest. She was very independant, had carers just twice a day to help with cooking mainly, then she had an infection in December and has quickly gone downhill since. Apparently the nurse is coming to take more bloods tomorrow, i imagine that will show all the same results as before, blood pressure, iron levels etc are all over the place. She doesnt take her prescribed meds as she says they all make her sick so shes really not helping herself.
DH is getting frustrated with her but maybe shes needs some honest talking to instead of the softly softly approach.

To be fair no-one can visit in hospital right now and covid is a valid concern. I can see why she wouldn't want to go. It does sound frustrating.

Does she have a social worker?
Yes the social worker was involved before xmas and she got her back onto 4 times a day carer support.
Think we may have to get her help again!

I would speak with the social worker. But if she has capacity and understands the consequences of her choices, then you may have to accept this is what she wants.

I think your right, if this is her time then she doesnt want to be alone in hospital, she wants to be at home. My worry is that she could cycle like this for a long time and its hard seeing my DH getting more stressed with the situation.
Im fortunate that both my parents are fit and healthy so this is my first time navigating an ill parent.
Im a 'fixer' and this is a problem that i just cant fix!

Sometimes although it sounds harsh you have to let her fail.

She wants everything her way but the impact is on your dh. If he refuses then the decision is pushed. Dancing to her tune is not helping.

TBH this doesn’t sound like a sheltered accommodation scenario. It sounds more like nursing home time

Sorry totally missed the bit where you had said that sheltered accommodation was the goal. I don't think this would be suitable either.

I think you have valid concerns about this dragging on fir a long time.

I'd talk to the SW tomorrow and stress your concerns fir her health, not eating, not drinking and refusing medication and ask for her to be assessed for capacity.

Sadly the Social Workers are under a lot of pressure so it's probably a case of phoning many, many times before you get things sorted. When we needed help with DMIL I was calling the SW at least once a day until things were sorted.

Sorry about the typos.

Just thought id update this as I cant believe it all started in January, that seems so long ago.
Anyway MIL went into hosptial and was diagnosed with stage 4 bowel cancer, is home now on end of life care, she has refused to go into a care home so is managing with support at home. By support i mean 4 carers visits soon going upto 5, weekly macmillian and district nurse visits and occasional overnight sleeps. DH is then spending all his spare time staying with her. Shes become double incontinent and DH is cleaning her up after accidents, its that or leave her until the carers come. I feel angry that MIL is making her son care for her like this. If he pops home for lunch shes calling him to go back, he feels that he cant just ignore her, she could pass away at any moment and then how guilty would he feel. Im selfishly hoping this doesnt go on for much longer.

Does your DH want to be doing her care?

I would be assuming her care is being funded by CHC so if he doesn't want to be there 24/7 could you talk to the DNs/Macmillan nurses about her having a live-in carer, or a carer doing a longer day shift with regular double up visits rather than so many calls and your DH picking up all the gaps.

One thing that is usually very good in the uk is hospice care at home. She should be able to have a comprehensive care package so that her son can spend quality time with her, talking and reminiscing, not doing personal care.

@AnnaMagnani ...yes shes CHC funded now, I didnt realise that could be an option. When DH has spoken to DNurse she mentioned putting in a 5th 10pm visit and seeing Marie Curie can provide more nights per week.
@endofthelinefinally
He doesnt want to give the level of personal care he is doing, but he wants to spend as much quality time with her as he can. I dont know much about hospice care so will look into that.
Thanks guys, its a minefield and unless you know someone whos already been in a similar situation its hard to know what help is or isnt available.

The GP, Macmillan, hospital team, local hospice should all be able to help.
I had a dear friend who was dying of emphysema and his wife was really struggling and couldn't get any help. The GP visited and spotted a tiny skin lesion on his face that was found to be a type of skin cancer. The GP was able to tick the appropriate box on the forms and within a couple of days the hospice at home team arrived and he had excellent care for the next 2 or 3 weeks until he died.
Yes, it was a round about way of getting the care he needed, but IMO it was entirely justified because he was on home oxygen, in a lot of pain/distress and desperately needed nursing care.
I hope you manage to get adequate care in place.

Thanks, ill speak to DH, he doesnt like asking for help and just gets on with it, however he did last week which is how I know hes reaching breaking point. Its good to know there are other things available.

Some good advice above OP. I have heard a familiar story over the years of elderly parents who are not coping but refuse more care and this has the effect of either forcing their children (and their partners, especially women) to cope instead until the inevitable crash or to draw a line in the sand - drawing the line is emotionally and psychologically very tough but struggling on can eventually be a lot worse.

GPs often have an adult social care co-ordinator attached, and there should be equivalents in hospitals as pp say and they have a duty to find a solution - they will generally let family take the burden first until you make it clear to them that you have drawn the line. You can be co-operative, helpful, involved and kind and still have drawn the line.

The number of nights Marie Curie can do is usually v limited and often not guaranteed.

I'd suggest instead of having 5 double up calls you ask for one carer either live in, or for a long shift, with a second carer coming 4x day to be the double up.

Live in person will need to sleep and it sounds as if your MIL needs 2 people for some of her care needs so a CHC funded night sitter may be needed.

You have the CHC funding so use it! People are often unaware that it gives the freedom to move aware from the standard 4 double up calls a day which social services provide and so the tailored options are underused.

Where I work it simply needs an email from a clinician stating why they need the variation - lives alone, family burnt out, totally unpredictable toiletting needs, pressure sores, confused would be enough. The Macmillan nurse would be ideally placed to do it we do this all the time in my team

As other posters have offered Continuing Health Care need to increase her care. Every person has a right to be at home and die at home.

As part of the CHC framework, they have to provide the correct level of care and can not top it up with the use of family members.

My Mum came home from the hospital on palliative care and was fast-tracked for CHC care on four visits a day. We eventually got her full-time care from CHC.

They are a nightmare to deal with and you have to fight them every step of the way but your Care Agency should be able to contact them, social services and you as her family. Do not accept no for an answer from them, escalate, escalate, escalate.

They can put in a live-in carer and provide double up care when needed.

I am sorry for you and your family, it is a battle on top of everything else you don't need.

Beacon is a great source of advice for CHC and free to speak to someone.

www.beaconchc.co.uk/

Good luck.

I do think she needs more care, she does have 2 carers per visit to lift her (now a hoist has been ordered), but DH is trying to get her from bed to commode on his own, in fact he pulled his back recently and could so easily injure his mum. Because hes filling in the carers see her as toileted, meds given, clean and settled...but thats because DH has intervened and washed her down. Ive told him he needs to tell the DN what level of care hes doing so they see the full picture (hes often not there when the carers are). Hes had some conversation as they are putting in a 5th visit but said either he can clean his mum or leave it for the carer to do.....nice.

I know this is going to sound really horrid but clearly cleaning his mum is a 2 person job not a one person job - he has proved that by injuring himself doing it alone.

A lone carer wouldn't do it - they do the manageable bits but anything else they would wait for the second person.

Is she even well enough to get on the commode? If he can't get her to the commode safely on his own he shouldn't do it.

Speak to the Macmillan nurse first thing in the morning.

Every person has a right to be at home I wish that applied to dementia!

You are quite right OP to say your DH should not be filling in, and here's why.
Something happens to him - COVID, food poisoning, falls over and sprains an ankle - and where does that leave his dying Mum?
Whereas if she were properly covered by professionals, if Carer A rings up and says, "can't come in", the team leader rings round and gets Carer N to turn up instead. Yes, it's not perfect, but compared to what would happen if he were incapacitated...

It also means - as people frequently say elsewhere on this board - that he can go back to being a son, and spend time with her that isn't just running around clearing up pants.

If she has stage 4 bowel cancer and is on palliative care it may well not be long (I had a friend with that - first symptoms were digestive issues one January - they didn't make it to May).

One final update, MIL has passed away, peacefully at home, as she wanted.
So here we are, DH is broken and is trying to wade through the mud of funeral arrangements and legalities - there was no will made.
I feel relief and guilt, relief that MIL is no longer in pain and guilt because im lookng forward to having my DH back and ill no longer be spending nights and weekends alone.....it will take time, we have difficult weeks ahead but im looking to the future.
I appreciate all the help and advice given on here, sometimes its good to talk to strangers!.