We've become carers, and I don't know how we're going to cope

[Gazelda]

MIL has been very ill. Has been in hospital for about 2 months but recently discharged.
In our opinion, she's not safe to live alone. But she is insisting she wants to be at home. She has capacity so SW are complying with her wishes.
She's immobile and doubly incontinent.
She has the highest level of carers from social services, but still falling out of bed, not eating/drinking etc
Me and DH both work FT. Have a school aged child. Live 40 mins from MIL and don't have downstairs loo so she can't move in with us.
We're 1 week in and she's had falls, 2 ambulances, we've each had to rush out of work to go to her. DH is in tears every night feeling he's letting her down but also trying to keep his job.
How the hell do we cope?

It's good that your MIL is part way through a reablement program. You need to make sure that SS know about every incident and problem over the remaining time. If they've already lost the initial carers, it's looking like it's not going well.

We've been in a similar position with 2 relatives, at the same time, at opposite ends of the country. I also had young children - it was a tough time.

My advice would be to find a care home which you and DH like the look of, prioritising what your MIL would want, that has spaces free. Then strongly suggest to your MIL that she goes there for a while, just until she gets back on her feet. Once she is settled, she might well decide to stay. My Gran was relieved, although she wouldn't admit it, when she no longer had to worry about getting to the toilet, and also had her bills, cooking and cleaning all sorted. My other relative was not so happy in a care home, he went back and forwards between care and his own flat, but 1 out of 2 was massive progress for us.

I had power of attorney for both relatives - one granted before they were ill, another done afterwards, as he had capacity. This meant that I could deal with all the paperwork and practicalities of assessments, selling their property, paying bills in the meantime. This helped persuade my Gran, as she was worried about sorting out her retirement flat, which I could reassure her I was dealing with.

Good luck, I hope your MIL comes to realise she needs full time care of her own accord, it's early days yet.

You are right to press SS. Not only are you unable to Keep doing what you do, but it's unsafe. If she's falling and you're going to scoop her up that's not safe or tenable. Even if you're willing.
This kept happening with my dad, with my mum refusing carer help. Upshot was we kept getting called. And eventually social services took action, and when dad was hospitalised refused to let him out until mum had accepted carers and adaptations like a bed which drops to floor level.

Your MiL isn't safe. If she is incontinent and has mobility problems you may even be headed to double handed carer territory.
I would push and push SS and litter comms with words like 'falls' and 'unsafe.'
The situation re carers is awful. More recently mum had a serious stroke and the hospital wouldn't let her home until we'd got double handed care. No local companies could provide it so she has two
Live in carers at huge expense (tho worth every penny might I add). It's the inheritance but sod that. But even that took w long time to source and mum was essentially a bed blocker.
Sympathies. It's awful

@julieca

It amazes me that so many people think they can just put their elderly relatives in a home as if they were children, rather than adults.

But in some cases there is no alternative and it's the safest and best option. The obstacle is communicating that to the elderly person. S/he can have a lot more dignity in a good, well staffed nursing home than being constantly losing continence or being picked up off of the floor at home. Tears are in my eyes typing this because I've seen the indignities of an elderly person insisting on being looked after at home without proper kit or staff. We tried abs in the end were complicit to an inhuman situation. The reality is that a nursing or care home can be better.

@julieca

It amazes me that so many people think they can just put their elderly relatives in a home as if they were children, rather than adults.

I don't think anyone thinks that. It's a massively difficult decision and one people take for the safety and well-being of people they cannot properly look after because of time and distance and work and children and commitments etc. And no-one thinks of them as children, but as fragile aging adults who deserve care and safety and dignity. That's why it's so hard. I think your comment is both mistaken and out of place.

heldinadream there are numerous posts on this thread saying social services just need to put her in a home and that OP needs to press them to get them to put her in a home. Completely bypassing the fact that if she has capacity and is refusing SS can't. It's not won't, it's legally can't. So I think juliecas comment is very justifiable on this thread.

@julieca

It amazes me that so many people think they can just put their elderly relatives in a home as if they were children, rather than adults.

Maybe because the parents become dependent needing others to care for them, need protecting from causing themselves harm, start showing unreasonable behaviour, get stroppy if they can't have their own way, becoming unable to think of anyone except themselves and what they want however unrealistic that is. Which is pretty much what children are like. So they behave like children but don't want to be treated like a child. Then if their exhausted family walks away to prevent themselves, their marriage, their job, their sanity, their physical health, their relationships with their own DC from being destroyed and their lives from crumbling around them... Oh that's wrong in their parents/SS/society's eyes too. IMO parents shouldn't put their own DC into a parental role if they're not prepared to be treate like children. Can't have your cake and eat it too.

What's amazing is that people don't discuss or plan for when they are unable to manage in their home or care for themselves.
Apart for 'don't put me in a home' no plans are made or options discussed.
(I have plans btw - we have a big house and carers could live upstairs and us downstairs)

@julieca

It amazes me that so many people think they can just put their elderly relatives in a home as if they were children, rather than adults.

But what's the alternative? In-home care isn't working here. The decision the MIL has made isn't working.

The "put" must be a really tough thing if you don't have a parent who can see sense. I have one friend who, along with two siblings, left their mum alone for a week because she kept insisting she could manage and refused to go in a home. She only "managed" because her three kids were run ragged helping her. She had two carer visits a day in that week.

She was furious but at the end, she agreed to go in a home. And she wasn't like the lady described in the OP. I'm still stunned that someone immobile and incontinent thinks this situation is better.

The bar for mental capacity for a decision is very low, and mostly I think that's right, in fact. But the sheer complexity of understanding that you've lost x y and z ability, the impact of a hospital stay, the fact that your children have to prioritise your grandchildren plus earning a living and can't just drop everything... the decision to 'just go home' isn't simple.

My mother is currently in hospital. So this is the easy bit as she's cared for and funded. But I'm spending 2 hours a day just doing logistics, visiting, laundry, liaising with therapists and social workers, iausing with family, managing her bills and her flat. I think I've just sold her car so that's one less thing to worry about. She's lost capacity for any more complex decision than what she'd like to eat. That doesn't mean I ignore her wishes but frankly I'm not putting a very confused, very unsteady, totally incontinent 87 year old lady into a place where her basic safety and dignity can't be ensured.

The alternative is you walk away. Parents are adults and can make their own decisions. It is not the role of adult children to continually rescue parents from their bad decisions.
And it is not the role of adult children to treat their parents like children. Wanting help is not behaving like a child. But if you cant or wont provide it, then don't. Then it is up to parents if they continue at home with inadequate care, or go into a home.

julieca it amazes me that people at the end of their lives are quite happy to let their busy adult Dc with jobs, lives and families of their own to run themselves ragged trying to meet their unrealistic needs often because they don't want to spend any money
Her MIL is entitled to make all the poor decisions she wants, but this is only acceptable if it doesn't rely on and impact the mental health and quality of life of others.

@MamsellMarie

What's amazing is that people don't discuss or plan for when they are unable to manage in their home or care for themselves. Apart for 'don't put me in a home' no plans are made or options discussed. (I have plans btw - we have a big house and carers could live upstairs and us downstairs)

Many do but they don't have an idea of the reality. There is an acute shortage of carers even if you can pay and can afford the space to put them up in your own home (you are clearly in a very fortunate position, as are my parents - but no everyone can). My mum lay in hospital for a month because no care company could provide the two people needed to care for her in her home. She could afford to pay and had the space but there weren't the bodies. When we looked at care homes as an interim arrangement they all said they either had no beds or had beds but not the staff to staff them safely. We can have plans but they may not be realistic. Any by the time we get old and needy it could be even worse. It actually scares me a bit having seen the sharp end.

Yes, very true @shallIswim it's a nightmare really and criticism of social workers when care packages aren't considered sufficient, really they are firefighting a worsening situation .

@cptartapp

julieca it amazes me that people at the end of their lives are quite happy to let their busy adult Dc with jobs, lives and families of their own to run themselves ragged trying to meet their unrealistic needs often because they don't want to spend any money Her MIL is entitled to make all the poor decisions she wants, but this is only acceptable if it doesn't rely on and impact the mental health and quality of life of others.

I think when you are ill, lonely, frightened and in pain you are not always in the best place to consider others needs. Which is why adult children have to set boundaries.

@shallIswim it scares me too. And yes in some areas there is an acute shortage of anyone. Never mind getting good people. I always wonder about those people who move out to rural isolated cottages. They haven't any hope of getting carers, or often even cleaners, to work for them.
And getting good carers is even harder.

Hi.
Do feel for you over your situ.
I was looking after my hubby who died in
April.
My Dad who is the same as your Mil.
Except he lives at home.
My mum who is in her own flat.
Over time you get more and more mentally
Exhausted !!!!
It’s like being on call 24/7 Seven days a week.
Agencies are expensive and not worth the money. Look at private cares.
Also Volenteer services are almost nonexistent.
If I knew what I know now.
I would never have take it on.
And now I can’t walk away from the situ.

Your really have to look after yourselves.
Because it Soul destroying.
My Dad has dementia as well.
He would be horrified if he only knew
What he was doing !!!!
If your mil is a danger to herself or others
Then she needs to be in a care home.
And I do know how difficult that will be emotionally.
If my situ continues I will be 6 foot under before my parents.
Then there will be no choices.
Look for a small care home.
It’s more personal.
Good luck 🤞

First of all, tell us about her mental capacity. See if she can get any help from the local adult social services team and a occupational therapist may also be able to offer advice etc.

There is no such thing as "having capacity". this is a common preconception.
capacity is a shifting thing - so while someone may have capacity to do their day to day cooking and shopping, they may not have capacity to run their financial affairs. Having Capacity in one area does not mean you have capacity to make every decision.
someone that has capacity to make a certain decision today may not have capacity to make that decision tomorrow.
what are SS saying that mil has capacity to do ? Are they suggesting that an immobile lady has capacity to arrange her shopping and cook herself meals ? Is it capacity to make the decision to live alone ? Or capacity to regulate her financial affairs.

Having mental capacity means that a person is able to make their own decisions and under the Mental Capacity Act the starting position is the assumption that the person has the capacity to make the decision in question. As you say, capacity may shift and may not be consistent but generally if you have the authority to make a decision on behalf of someone, such as a Lasting Power of Attorney you have to show that you have made every effort to encourage and support the person to make the decision themselves, or involve them in it. The problem for the OP is that just because a person makes a decision which could be considered ill judged, eccentric or unwise, this does not necessarily mean that the person lacks the capacity to make it.

Under the MCA, you are required to make an assessment of capacity before carrying out any care or treatment if you have reasonable belief someone lacks capacity – the more serious the decision, the more formal the assessment of capacity needs to be, involving the appropriate healthcare professionals or other qualified assessors.

It takes a team of experienced professionals to manage this level of incapacity. With the best will in the world, two loving relatives will never be able to do it. The kindest and safest thing is to hand back to SW, keep saying you can do nothing, and they WILL sort it (personal experience here). Good luck, you sounds lovely, but exhausted from it all

It was quite surreal to see this thread resurrected. I started it last October when things were at rock bottom. Well, they carried on in a similar vein for a few weeks and nearly broke us all. MIL ended up in hospital again and our voices were finally heard. She was persuaded to move into a care home. It was a lovely home, not all shiny and all mod cons. But homely, rough round the edges and full of caring. She was there for a few weeks but didn't get her strength back. She finally died at the end of November. DH, DD and I all had chance to spend time holding her and saying goodbye. She's now at peace.

Any advice I'd give to anyone going through a similar situation - keep fighting to be heard. You know your relative best and have their best interests at heart. And even if they don't want the care you know will be the most comfortable for them, you have to keep fighting for adequate and appropriate care.

The system is often against you, but everyone is just trying to do their job as best they can. It's the social care system that isn't meeting the needs of people when they need it most.

And lean on those around you. Don't be proud. Don't soldier on. People who love you will be desperate to do what they can to support you emotionally when you feel most helpless. We found love and compassion from the most unexpected people.

I'm so glad you got the help you needed. So often it takes a crisis for the truth to come out. My mum went into hospital in June last year, then to rehab and from there to a home. She hates it, she's miserable and she wants to come home but she is doubly incontinent, immobile (requires a hoist) and has dementia. Even with the highest level of input from SS I can not meet her needs so have reached the point where I accept that she is clean, warm, fed and cared for and that is more than I can achieve for her at home.