Who has final say in this situation?

[abovetheweather]

Hello - any advice or experience on this situation gratefully received.

My MIL lives alone since her husband's death a year ago. She's been completely bedbound for four years. She refused physio to help her sit and walk after falling four years ago, and her condition has worsened to this point. Her husband cared for her up until it got too much for him, when we organised private carers. Since his death, she receives 4x daily visits from carers who do all her personal and feeding care (she's doubly incontinent and on a catheter, can't sit, stand or walk, cook etc). Her two sons (one being my DP) visit every other weekend to shop, clear out the fridge, empty bins, keep on top of her prescriptions, sort out her newspapers etc. They both live 2.5 hours drive from her. It's gruelling, and affecting all our family lives, and we need more help. The house is becoming more dilapidated, with an old boiler, a failing washing machine, and more. Among her physical issues, which also include being pre-diabetic, she is losing feeling in her hands, and can no longer dial a phone. She suffers short-term memory loss - for example, she can't remember if a GP has called or why she's had a blood test, and forgets to write things down. Undoubtedly she is grieving too, although she never / rarely mentions her husband. She's lying in a bed, 24 hours a day, with only visits from the carers to break up the day. DP phones every day too.

For reasons that don't need detailing here, a GP visited her in December 24 and said that the best next step was for MIL to go into private nursing / care home. We are in total support of this, feeling that she will be much safer, have more company, have more stimulation and it will very much ease the burden on all of us.

MIL does not want to go into a care home, preferring the current set-up. She is not really aware and doesn't care about the effort and admin that it takes the brothers. The brothers do not have POA for her health.

Social services have recently visited and say that despite all the above she does not need to go into care, and that her care can not only be increased (to cover shopping, prescriptions, laundry etc that the brothers are currently doing) but will reduce in cost as the council will fund part of it (which was extremely surprising to learn after a year of paying full whack). However, her failing health, failing house and general safety don't seem to have been considered - and her being at home will not alleviate the worry the brothers have about what the next phone call will bring. It will mean they can visit on a more informal basis.

In summary.

MIL lives alone in a bed 24 hours a day, in a falling apart house, with her sons worrying about the entire set-up and constantly in fight or flight mode for the next phone call where something has gone wrong - which could be anything from the oven is broken to running out of toilet paper based on past experience. She does not want to go into care. The brothers don't have POA. The GP states she should go into care. Social services think she can manage at home with more care. What happens next? I fear I know the answer, and that it's MIL staying put as she can still decide, despite her failing health and short-term health issues. Who do we speak to first, can we request another social services visit? Who has final say?

Thank you so much if you've reached this far. Even typing this out is cathartic.

This.

it’s really hard, but the strain of the care along with all the driving is intolerable. Her poor choices can wreck her life, but not everyone else’s.

I feel for you all, I had this for years with my dad until it all ended very badly, because he just wouldn’t listen

@HobbyHorse30 in England under the Mental Capacity Act is decision specific. There's no certificate to say you lack capacity.

So a decision about care, the decision maker is the social worker if they are funding it. While a decision about medication would be the GP as they are prescribing it.

@AnSolas While a catheter is a medical device, having one in doesn't mean the MIL doesn't have capacity to decide about her care. The catheter is one decision (and quite possibly not even made by the GP but by a District Nurse or Continence Nurse) and social care is a completely different decision.

Sorry AnnaMagnani
my post may not have been clear.
Inserting/removal would be a medical process which requires capacity to consent. I would see that capacity to be low and use is a daily event. That if a GP/nurse form a belief that she has not got that level of capacity that rolls out to other decisions and results in a safeguarding concern.

No capacity doesn't roll out like that, it's specific to each decision.

And a long term move would generally be seen as a more serious decision than a catheter.

Dreadful post. How selfish would you have to be to put your busy adult DC with jobs and families of their own through this indefinitely.
The wants of one person at the end of their life don't trump those of people in the prime of theirs.
Not what I'd want for my children.

Quite, @Sunnnybunny72

I’ve promised my dc I’ll never behave like that, and have put a very full welfare and financial POA in place, although I’m only in my fifties, so hopefully won’t be needed for a while, if ever!

That’s interesting, thanks for explaining. That must make PoA a tricky thing to manage, if capacity has to be established each time a decision needs made. Obviously I can see the benefit for the individual, but goodness what a big grey area

TBH there are situations where it is obvious the person lacks capacity for all decisions.

But often even very cognitively impaired people will have capacity to make some decisions for example what they want to eat/drink/wear, what they want on TV and so on.

And in some decisions reality just takes over - if the person lacks capacity to agree to a treatment, if they are going to be kicking and screaming all the way through it, you aren't going to do the treatment.

This.

I hate these threads bashing SS because they don't do exactly what you want them to. SS often are standing up for the rights of people to make decisions about their own lives.

Yes her life isn't good, but it's not going to improve much in a care home. She'll still be cared for in bed but it won't be her bed and won't be her home. Maybe she feels safe where she is.

Yes it would be easier all round for mil to go into a care home but if she doesn't want to then so be it.

Many people live like this and don't have any family supporting. If the family don't want to provide the support any more then they shouldn't.

That makes sense.

In Scotland, we have legislation which sets out how people’s choice etc should be safeguarded in the event that they don’t have capacity. For example, their views should always be considered, any action taken should only be when there is a tangible benefit to the person which cannot be achieved without intervention etc. So essentially it’s recognised that the person doesn’t have the capacity to make a balanced decision, but also that they should be included in all decisions where possible. There is also guidance around “bad” decisions, and how people have to be free to make choices that others don’t agree with

How is it selfish to not want to be put in a care home when care can be provided at home with no issue?

No one is saying the needs of someone at the end of their lives trump anyone else's. They are equally important. But you seem to feel the person at the end of their life shouldn't be listened to? You feel old people aren't important and should'nt have any say in how they receive support?!?

@Oldermum84 but it’s nit being provided “with no issue”

That's brilliant
My friends mum resisted for ages
Eventually had to go in and told the family off , for not moving her sooner (she made Loads of friends)

If the family don't want to provide the support any more then they shouldn't.
It's not as easy at that.
Would that it was.

Unfortunately there are people dealing with elderly relatives who are at their wits end because they demand care from the family and not strangers.

Yes, you are right, it is not what many of us want for our children, but there are so many others who see it as their children's duty to look after them, without making proper legal arrangement (probably because they think it keeps them in control).

The whole business of elder care is a mess and successive governments have fobbed off dealing with it properly. As a society, we need adult conversations about how we deal with it and as individual families, we need to have the difficult conversations sooner rather than later.

The sons are doing 2.5 / 5 he round trips once a fortnight- while working full time
imagine the impact on your life.
most tiring and unsustainable.
the mum cannot look after herself.
I would not impose myself on my adult children in this way
elderly parents can become stubborn and unrealistic (and very selfish) in their expectations of their adult children.
And in my experience these people weren’t particularly kind when they were younger either.

This is such a naive and selfish perspective. The reality is that lots of families will move heaven and earth to help and support those that they love. It is extremely difficult to withdraw this support if you know that the consequences of this decision could lead to a much loved family member suffering terribly and potentially dying a horrible death.

This is why lots of us feel almost blackmailed into supporting situations and setups that we fundamentally think are completely inadequate, harmful and take a terrible toll on us because we fear the alternative of withdrawing care and highlighting the seriousness of the situation to the elderly person and outside services could lead to a terrible outcome for our loved ones.

I know you think SS are standing up for people's rights but sadly they also will allow people to deteriorate and suffer to an unbelievable and dangerous extent all in the name of autonomy and consent. This conveniently reduces costs and obligations for them and forces families to fill the gaps.

How is it selfish to not want to be put in a care home when care can be provided at home with no issue?

Disgusting to say that the very real risk of death or serious harm by the mother is "no issue". People have kindly explained the situation and you're pretending the issues aren't there.

Well, precisely. MIL's last years took a significant toll on DH and his siblings, and also caused a lot of friction between them.

Many people reach a state of mind where they lack clarity and manage to delude themselves into believing that 'I can still look after myself' when they can no longer cook a meal (can just about shake out a bag of salad and warm a slice of supermarket flan), change their bedding, arrange for someone to come and mend the fence, or do the shopping. They refuse to recognise that many things are being done by their adult children, while complaining about how the adult children do them ('Well, she weeded the flowerbed, but she didn't make a terribly good job of it, she was out there for two hours and I used to do it much less than that, it wasn't in that bad a state, she said there was terrible bindweed but I've never noticed it, when I looked out she was having a chat over the fence to Barry next door.' 'I think they were talking about finding a fencer.' 'Were they? She didnt say.')

I KNOW that I will mature into a bolshy old crone, and have told my DC not to stand for it. I don't want to put them through what I saw DH deal with and what I'm now seeing friends and relations deal with.

I think the problem is that people think moving to a care home will magically solve any issues. Someone cared for in bed in a care home doesn't have a much different experience that someone cared for in bed at home. There isn't someone sat by their bed keeping them company... They are on their own, in a room, with carers popping in and out to provide necessary care. The same as at home. Just at home it is likely to be more peaceful (no one in the next room crying out, no carers chatting outside their door at 3am, no alarms going off etc), they may be more likely to feel safe and happy. I am not saying this is in all scenarios, some people want to go into a care home and that's fine. What I'm saying is it should be a choice made by the person themselves so long as they have the mental capacity to do so.

I don't think my view is "disgusting". It also happens to correlate to the law! I happen to have visited people in care homes for my job who literally sit there all day crying. It is heartbreaking. (I have visited people in their own homes who do this too and who I think would be happier in care homes, but if I can't persuade them to go then I still support their choice. I have to.)

And no, there isn't a "risk" of death as you put it, death will definitely occur. And being in a care home won't change that.

@EdithStourton you raise a point I've been musing about - do we all morph into selfish, demanding people as we age, leading to the difficult situations we're reading about here? I've seen grown adults saying they'll never make demands on their offspring like their own parents did to them... and then going on to do just that, makes me worried that I might do the same, despite my determination now, not to!

Moving into a care home doesn't solve all the issues (and can bring up new ones) but it does solve:
How to cope with elderly parent when carers can't get there (lots are off sick, snow etc).
Adult children no longer having to worry about the buggered boiler (which the parent refuses to have serviced until Darren can do it, but Darren is currently off sick and unlikely to be back at work any time soon if ever), cranky washing machine, etc. And then deal with the fallout when, inevitably, the boiler breaks down on 23 December, or the washing machine floods the kitchen.
Elderly person being less lonely as not stuck indoors solo 23 hours a day, bar Barry next door popping in to change a light bulb ('I don't know what I'd do without Barry!'), the other neighbour calling in dutifully once a fortnight, and the under-appreciated adult children, who come every few days but spend their time running endless errands.
And so on.

DM was not moved in hospital for 7 weeks. After a few days in a home she was helped to be with other residents in a special chair and talking to people. The DM here might be helped to get out of bed! Carers 4 times a day won't do this. People pop in all the time. Not 4 times a day. It's definitely better for everyone. DM was noticeably brighter and happier. Yes, she missed her home but she accepted we had no choice. With dementia parents do not think of others. That often disappears.

A care home means family worry less. That's worth a lot and in many ways it's the last thing a parent does for dc. They should recognise when dc need help to get through the situation too. The DSs here have given a lot of time and their own families matter too.

It sounds like she has a terrible quality of life but she also has capacity to choose that quality of life. If social services say she can access more care paid for by the council then that's what needs to happen to take over some of the tasks the sons are doing every weekend. Then the sons need to reduce their visits and see if she manages or if the wheels come off. She's not going to get sectioned or made subject to DOLS if she's got capacity and not at risk of immediate harm which honestly it doesn't sound like she is. She's stuck in bed waiting for carers to help her 4 times a day which sounds shit but that's her choice.

And no, there isn't a "risk" of death as you put it, death will definitely occur. And being in a care home won't change that.

So the risk of falling downstairs and dying alone in agony shouldn't be addressed because they'll die anyway at some point.

Sorry but I don't share this view and find it quite horrible.