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.

They need a lpos and poa asap while she still has capacity. If she becmes unsafe in her home she would have no option and lpoa would enable her sons to determine it. Ideally she would agree before that point.

I hear you , but if these people can only stay in their home, at great personal cost ti their adult children, being run ragged , doing it all behind the scenes, and causing themselves ill health and stress ( and arguments ) in their marriages and relationships with their own children.
then yes it is the best option.
they are not independent and their adult children are not there ti wait on them hand and foot

one of my best friends had a nervous breakdown - her mothers demands and constant criticism.
my friend was destroyed
my friend had to step back
her mother is still at home with carers - who she is leading a merry dance - but at some point she will be in a home.
(she Also had mice because she can’t clear food debris away properly) - has a Cleaner once a week.

You are right in terms of the right or moral choice and in terms of what makes sense for the older person but none of those are reasons to force a person with capacity out of their home.

Ah, the mice. We discovered mum's residents when she was making tea and just tipped the poos out of the mug and carried on! Was very annoyed when chucked out the poster because the mice had been shitting in it a lot while eating the crumbs.

OP here. Thanks so much for all your comments and debates, loads of food for thought. What's happened since I posted is that we've (sons and wives) decided to present the options of a) staying at home - what will happen in terms of care, shopping lists, when things break or go wrong, detailed finances etc b) trialling respite for eg two weeks over summer so that we can have a proper break and c) care home option, what will happen, quality of care, chance to be around people, detailed finances etc. This can't happen for a couple of weeks due to work travel, but it seems the fairest option.

@abovetheweather At what stage do you prioritise yourselves though? Why carry on in a situation that's making two families unhappy? You could stay with the status quo but at what cost?

Privately funded care here is £5,500 a month and they decide if they can manage the needs of the potential resident. If not then it's going to be a very expensive nursing home. I think you need to start looking near you and DBil to see what's available given the circumstances. Here LA would not pay if DM is managing at home and has above £23,000. (I think!) So you do need some hard facts before you meet. Your DH is facilitating DM "managing" and gives a false impression.

We all recognise this is a very sad situation but I think you need certainty for the future and holidays! What do your dc think? They must be affected by this. My DH would never have done so much for his DM. Nor our 3 elderly unmarried aunts. It's impossible. So there had to be give and take and ensure the majority of people involved are happy. Not just one, who, being honest, has had a lot of effort and love given by family members. Time for change.

No, not everyone.
One of my elderly cousins was offered a home by a couple of her DC, but said no, it wouldn't be fair on you, your spouses, the DGC - and she went into a care home.

Another part of the issue seems to be that a lot of the people who are very elderly now never had very elderly parents to worry about themselves, not for more than a few years anyway, because average life expectancy was so much lower. A lot of the increase in life expectancy since about 1950 seems to be due to the elderly living longer due to medical intervention, rather than young children surviving because of vaccination and better hygiene. See https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/lifeexpectancies/articles/howhaslifeexpectancychangedovertime/2015-09-09

So - to get back to my point - not having had to deal with a parent in a state of dependency for more than a year or two, and not having had many friends who had to either, they have very little idea of the amount of stress and hassle they're causing. Only ever having worked part-time after having children (or never having been much involved in childcare), they forget that their DD, retired herself, has her grandchildren two days a week to save her own DC nursery fees. It doesn't occur to them that that for the 18 months that they 'kept an eye on Mum' (who just needed someone to drive her home from the supermarket once a week, change the landing lightbulb and hoover the stairs), they were a ten minute walk down the road, not 30 mins (or 3 hours) drive away, and had no childcare responsibilities (because their kids were already into their 20s and didn't have children yet).

So I honestly think a lot of the very elderly just have no idea. Others would if they thought about it but close their eyes to it. And others 'have capacity' but are no longer 100% rational.

Unfortunately 'capacity' often seems to be 'the capacity to delude myself that I can manage on my own'.

It is VERY difficult. Nobody wants to make the elderly person miserable, but when the cost of them being at home is miserable adult DC and marital barneys... what then?

It's just intractable.

Those are excellent points @EdithStourton really interesting to look at things that way. And does explain the total lack of ability to see how their behaviour is affecting everyone else too.

I've been the family carer for my DMiL, she had dementia and would tell all medical visitors, or staff in hospital, that she did all the cooking and cleaning but they always checked for confirmation. We were very lucky that DD and DSiL were both in the care industry so they did that side of caring.

My sister lived opposite her MiL who was in a wheelchair but managed otherwise. Then she started forgetting things, nearly setting her kitchen on fire . At that point she was told she needed to go into a home. They spent a few weeks looking for one and arranged a two week tester session. After all this I don't want to go into a home changed to an I'm staying here attitude. Could you find a home that would do this and tell her she's going on holiday.

FIL was self funding. MIL took him to a day centre at the care home and one day just didn't take him home.

Totally different world if you don't need funding.

No it wouldn't, if she has capacity to understand the risks and make the decision, she is perfectly entitled to choose to be unsafe in her own home and the PoA would not be activated.

Equally the sons do have a choice whether they continue bearing the burden of care that they do - they also have capacity and can balance their own needs and risks accordingly.

It's much better for everyone that these conversations happen calmly with all parties behaving constructively and investigating options together collaboratively. A good social worker can be a great facilitator of this more positive discussion.

There can be a world of difference. At home, my dad was on his own with the TV, and had 4 x 15 minutes visits from carers. They'd make him food but his sheets didn't get changed, his clothes didn't get washed, and the toilet didn't get cleaned. In the care home, all those things happened, plus he was encouraged to eat, had a choice of food, and had company down the corridor if he wanted it. He was safe and if he fell, he'd be seen and picked up; if he soiled himself he'd be cleaned up; he was showered, shaved and helped to dress every morning, help his lovely carers at home had never been able to get him to accept. So I'd disagree that there is 'not much difference'. My dad wasn't happy in the care home but due to the dementia, by then he wasn't happy anywhere. If you'd asked him if he wanted to go home, he'd have said yes, but he meant home with my then dead mum in it, and no one could provide that. That was heartbreaking.

If you'd asked him if he wanted to go home, he'd have said yes, but he meant home with my then dead mum in it, and no one could provide that. That was heartbreaking.

I think that's the crux of it quite often. Everyone wants things to be different but it's not possible. It's so sad but ultimately the best decision is going to be hard whatever it is.

It sounds like the MIL owes a home outright which the 2 sons will inherit?

Can't you frame it in your mind that your DH is 'working' for that inheritance?

I personally think it's something that families do to look after their elders (yes I am English!) but if they don't want that there is the option of paying for more care or a housekeeper visit at the weekend.

And yes I have cared for both of my parents (together with my siblings - we shared the load) I also lived 2.5 hours away.
It was hard at times, but also a privilege to spend time with them and return the care they gave me when I was a child.

One parent died at home the one did go into a care home for the last 12 months of life and we kept the house until their death so we could use it when visiting them.
I found once they went into a home they declined so much that it felt we lost him then.
Especially as although the home & staff were nice it always felt awkward living in public like that.
You could tell my parent didn't like it, but they accepted their fate (also dementia but still kept their reasoning and never forgot who we were) and just gave up.
That was ok to be at peace with because they'd stayed home for as long as possible.

But I'm glad we didn't put them into a home a second sooner than we did.

I would strongly advise you (based on personal experience) to set the scene carefully for this conversation. Even if your MIL is the calmest, most rational person in the world, this conversation is about matters fundamental to her life, and it will be distressing and may make her angry if the conversation is presented as a "united front against me", which will happen if you've discussed it between yourselves in advance, but the conversation is "sprung" upon her. This is not intended to be a criticism of you, the kindest person in the world can trigger this reaction if the conversation has no foreshadowing.

You've said this can't happen for a couple of weeks, so that gives you a couple of weeks to do the groundwork. If you're able to visit her, if not write a letter (and if you are visiting, write a letter or make a recording anyway so she can revisit it as she needs to), organising a date for the conversation, and explaining your point of view and outlining the options as you see them and have described above. Explain that you are doing this so she has time to think about what she wants. Don't get drawn into having the conversation in advance, but do explain to her what and why you need to have the discussion. Ask her to think about what she wants her life to look like going forwards, and to think about how she can be supported to achieve that.

When you have the conversation, make sure you are centering her wishes for her life. Of course this can be tempered with what you can provide, but ultimately you need her to lead on this decision, and the best way to do that is by listening and concentrating on her needs and wishes and how she can be supported to achieve them while meeting your needs.

Make sure you have also done some research to know what is possible with what she has. While noone should ask her to choose a care home as part of this conversation, knowing what kind of home she might be able to access given her condition and financial status means those questions can be answered confidently and honestly.

Remember whatever her physical state, her life has meaning to her. She will have needs, wishes, things that bring her joy and sadness. She's not "just a burden", though I completely understand it feels that way sometimes.

Finally a practical recommendation. Have a safe word agreed between you all, especially those who she is a blood relative of. If they need to, they use this word and the non-relatives need to faciliate a break in the conversation. It's just to give people a safe way to release tension, so the conversation can be kept calm.

I got Mum assessed by the mental health team when I felt she had dementia but at this point I'd already got POA for her.

Shes in a home following a fall and a spell in hospital. She's had a subsequent fall at the care home and is now bed bound which is sad as she was wheelchair dependent to get around and to do activities with her friends at the home.

Unfortunately she is way over the threshold for the LA to pay for part of it So she's funding it herself out of her savings.

I'm sure you can speak to her GP to get her assessed and hopefully put in a home. They have to take into account the wishes of family members and their mental health as well.

@roundaboutthehillsareshining Unfortunately that type of conversation centred on what the older person wants gets most of us nowhere! We know what they want. No change. Everyone has to be the centre of the discussion because others are making huge sacrifices in this situation to facilitate what one person wants. What about what dc might need? The dc of the carers?

It's also not the case the MIL hasn't had a huge amount of input and consideration from her family. Maybe now it's her time to give something back. Their time and work/life balance. Maybe they need to be kind to themselves and do need to be clear about their needs. It cannot be one sided with agreement to everything mil wants. She could of course fund everything herself. Or a home much nearer op. Just because you are old you should not stop being considerate.

@TizerorFizz
Agree.
Mil wants her sons to keep picking up the slack....so unless you're prepared to step back, and let the cards fall, nothing will change - except the health and wellbeing of the sons gets worse.

But ultimately her choices are at the heart of this because she has the capacity to choose what her life looks like. If she tells Social Services she wants to continue at home and she is found to have the capacity to make that decision, then that is what will happen. The family will either have to go along or leave her to cope without their support.

By centering the older person, by listening to their needs, wishes, etc, it is much easier for everyone to have a constructive conversation about what the future looks like, and that horrible but much used statement "what good looks like" and to steer the conversation to the goals that work best for everyone. Just telling a person that they have to live their life according to the wishes of their family doesn't work, it just creates conflict and anger.....

What her life looks like! Not much without her sons. A life she's not experienced. What she wants is the status quo. If she didn't, her sons, Dils and GC would have been considered. They haven't been. Yes, a two way conversation but continuing to expect this level of support should not be in the table. Maybe working out what her life looks like without constant attention from her sons would be a start, but many old people cannot imagine this. Sons feel guilty and carry on. You get absolutely nowhere if the elderly person decides with no reality check. The OP's family need to have a united front and think of their lives.

My DM thrived in her care home. Got a new lease of life. Op needs to see what homes are possible. SS won't do anything. It's down to family. Where dm was, lots of people were self referrals. They were not pushed into anything but realised relatives needed to get on with their lives and be sure about safety. They need to be able to stop worrying.

Just telling a person that they have to live their life according to the wishes of their family doesn't work, it just creates conflict and anger.....

'The person' here could easily be the sons, though, as well as the mum.

That is great advice! Thank you

I'm not familiar with a DOL but isn't b that directed at keeping someone in place somewhere?
What grounds would she be sectioned on - she's neither a danger to herself or anyone else.

I can only speak from our family's experience re DOL and sectioning.

FIL had dementia, refused any care and was seen peeing into an electric fire / heater. Totally unable to prepare his own meals and refusing meals on wheels yet complaining he was hungry. He was just about mobile but physically and mentally frail. He was seen by a psychiatrist at home and deemed to lack capacity and therefore a danger to himself as he was refusing assistance. Was sectioned and taken to hospital. From there he went into a care home, were he lived for another 3 or so years.

The OP's MIL can't contact anyone outside of the 4 times a day visits from carers. She has short term memory loss, is doubly incontinent, bed bound, unable to get herself a drink, let alone a meal. I'd say that was dangerous.