Caring for ex-Alcoholic MIL

[vitahelp]

I’m posting this here even though the person in question is only 65, but feel it is the most relevant area. I’m looking for some advice from anyone who may have been in a similar situation or understand the support system in place for these situations.

MIL has been an alcoholic for over a decade and sadly became seriously ill last year and almost died (was given 48 hours to live). Miraculously she survived and spent a few months in hospital followed by several weeks in a care home (private home but covered by NHS on a temporary basis). She developed hepatic encephalopathy and was predicted to remain at Level 3 meaning she would need to remain in care on a permanent basis. But again, she defied odds and has improved to Level 2 and is now at home – she lives alone.

This should be considered a good outcome but actually it has created many problems. BIL and family live 20 mins away from her, whereas we are 1.5 hours away. Therefore, they have taken on the lions share of the work. It is now getting too much for BIL who says he doesn’t feel he can make plans on weekends anymore due to the possibility of her needing him for something (he does her food shop, cleans her house, has had to go out several times because she has collapsed). He also plans to move closer to where we live within the next 6 months (not to get away from her, but for other work related reasons) so soon there won’t be anyone in close proximity to her (aside from some friends/more distant family members).

So, the question is, what happens to these people who aren’t elderly and aren’t so unwell to need to be in a nursing home, but still can’t look after themselves as such. Where do they go and who looks after them? Do we have any options?

Does MIL own her own home?
If she has low savings she may qualify for social care, you can request a social services assessment. They may fund or advise domiciliary care visits.

If she doesn’t qualify this is one situation where equity release could make sense. Look around for the best rates; then install a ring doorbell and employ a cleaner and engage for a carer to visit x times a week.

Then you, your BIL and any other relatives can focus more on social visits, bringing bits and bobs and doing odd jobs amongst it, rather than carrying the full burden of care.

She may need sensitive persuading and her sons will have to convince her that her well-being and comfort now are far more important to them than any inheritance after she has gone.

In general I would say an assessment of her needs by social services. At least a conversation with them. But if trying to think ahead to future needs, be prepared for them to do absolutely nothing until the crisis has actually happened.

Age UK helpline may be able to give you ideas and contacts to set up some support too.

Does she have carers?
She either needs a good care package with a falls alarm or pendant or supported living
Ask her permission to request a social services Ax to get the support she needs

What about looking at a retirement flat/village where they have access to wardens etc on site but live independently? That way she has someone on call. And they will be able to 'progress' her care as she needs it.

@LightDrizzle Yes she does own her home, and her savings are very low. Sorry for sounding stupid, but would you mind explaining how equity release works in this circumstance?
I think we worry that because she is so young and could potentially live another 30 years, wont her money run out quite fast with the cost of carers etc?

@PermanentTemporary This is the odd part, I'm quite sure she was assessed by social services when she left the care home and they decided she could come home. But for some reason she doesn't have visits from carers. Would we request a re-assessment?

Yes, that is my concern. The thing is the crisis has already occurred to some extent, since returning home she has 2 x ambulance transfers to hospital after collapsing, and one including firefighters breaking down the door..is this enough to justify help when it is using resources in this way?

@AssignedBlobbyAtBirth I don't think she does, no. I must admit we are a bit unaware of what exactly is going on and what support she has, my DH is having a call with BIL today and is going to find out exactly. But as far as I'm aware she doesn't have carers visiting hence why BIL keeps having to drop everything to go there.

Do you have to qualify for a care package, I don't understand why she hasn't already got one. Is it something you have to push for?

@LittleOwl153 I did think about retirement villages, but do you have to pay an ongoing cost? So say her house was equal to the cost of the retirement flat, how would she pay any additional costs for the services included in the village? Is it something we can request financial help for if we can prove she needs to be there?

Thank you all for your help so far, and I'm sorry to respond with so many more questions. My knowledge is very limited, and it isn't something we expected to need to deal with in our early 30s while we still have dependent children ourselves.

[quote vitahelp]@PermanentTemporary This is the odd part, I'm quite sure she was assessed by social services when she left the care home and they decided she could come home. But for some reason she doesn't have visits from carers. Would we request a re-assessment?

Yes, that is my concern. The thing is the crisis has already occurred to some extent, since returning home she has 2 x ambulance transfers to hospital after collapsing, and one including firefighters breaking down the door..is this enough to justify help when it is using resources in this way?[/quote]
Hello, it's not so much about her not 'justifying' help, it's more I suspect since your BIL lives nearby the person doing the assessment will have assumed (or possibly your MIL told them) that she would be looked after by family and so the possibility of carers wasn't explored further. This is really, really common, social services are very short staffed and cash-strapped so they won't push care onto someone that (a) has capacity to make their own decisions and (b) doesn't seem to want it. The family and the person themselves often underestimate how much work it is to support someone frail and needy (particularly if they were relatively fit and well before and then there's a fall or sudden disabling incident/illness) and the person themselves often is resistant to the idea of outside carers coming in and/or assumes family will be fine doing it all so it's too easy to say to SS 'oh yes my son/daughter will look after me' thinking it's a case of popping over once a week and it ends up being much, much more than that and SS won't typically push back that hard.

For sure go back to social services and ask for an updated assessment, you may need to be a bit pushy, your BIL needs to be crystal clear about how much care your MIL has needed and how much he can reasonably do himself which may mean an awkward conversation esp if she's a bit in denial about how unwell she really is. The maximum assistance your MIL is likely to get is 4 visits a day (maybe 1.5 hours total) so it's not like having someone there full time, she is still likely to need assistance as council carers won't usually do shopping or more than light cleaning but having at least some outside assistance would make things easier and mean someone checking on her regularly. I would suggest talking to her GP and/or specialists about the 'collapses' - are these falls or faints or what - if she's to live safely at home those need to be controlled? There are often fall prevention teams with OT input that can be helpful.

I'm a big fan of retirement villages in general but they don't sound particularly like the solution for your MIL in this instance, they are for people that largely live independently and just want the reassurance of warden presence and perhaps some light assistance with housework, meals etc. There may be someone on site 24/7 but they generally aren't supposed to be constantly coming out to help, it's more for emergencies - you'd need a residential care home for more of a 'call button' system where someone will come and help her whenever she needs it. If you think it's reached that level talk to the social services about that although if MIL has capacity and doesn't want to go she can't be forced to. If she does want to go for sheltered housing I would consider a social housing/council run scheme rather than a private retirement village, the latter can have absolutely sky-high service charges so while she might be able to afford the initial purchase price she might struggle with the ongoing bills. Whereas the council/housing trust owned ones are usually far less swanky and you usually rent rather than buy (although some are mixed) but the service charge/rent is usually capped at housing benefit level so affordable for all - there's often a waiting list for these though so if it's something you want to explore get on to it now.

On a practical level there are things you can do to make life easier right away, get her a keysafe for one so no firemen breaking down the door if she has another fall. Get her a pendant emergency alarm too. I'd insist on online shopping or click and collect rather than your BIL running round the shops for her, or better yet perhaps a meal delivery service like Wiltshire Farms Foods who will deliver and put everything away. One less job for BIL to do! If she or you can afford it I would start outsourcing things like cleaning, gardening, laundry and also get her used to taking taxis to appointments etc rather than expecting family to drive her everywhere. Like I say even if you do manage to get some SS assistance it won't cover this kind of thing so a solution does need to be found... good luck!

[quote vitahelp]@LittleOwl153 I did think about retirement villages, but do you have to pay an ongoing cost? So say her house was equal to the cost of the retirement flat, how would she pay any additional costs for the services included in the village? Is it something we can request financial help for if we can prove she needs to be there?[/quote]
I'm afraid I don't know anything about them. I know a friend looked at it in similar but not identical circumstances.

Their parent ended up in a council/social housing residential block, where again she has her own flat and the capital from her house is used to pay the rent. I guess when that cash runs out she claims housing support? I guess that depedns on the availablity in her or even your area. Our area has a shortage of family homes but flats in these kind of blocks are plentiful!

She needs a new care needs assessment. Your dh and bil need to say they can no longer provide any care so she needs to he assessed for what she needs. Cover what problems there have been and what she cannot do herself.
AGE UK can provide helpful advice on what social care should do.
You will need to push for it.
Your family will need to be strong in telling mil they will not be able to do stuff so she needs to accept care.

What Maxely said ^
But this is an example of supported living where carers are on site to support with low level care etc own flat, rented or bought, communal stuff if wanted.
I know this is in Derbyshire, but maybe something like this in her area?

https://housingcare.org/housing-care/facility-info-116213-stonelow-court-dronfield-england

All the best op

My MIL has alcohol dependency too, and frequently falls which has resulted in various levels of injury and hospital visits/stays. She isn't seriously ill though, so far as we know at least.

I am trying to persuade her to have a 'home help' rather than a cleaner, which would be provided by a local care agency. They would come in and clean, change the bed, help with her chores, have a cup of tea with her. More expensive than a cleaner, but she will at least have some companionship from that too. She already wears a pendant in case of falls - not that she ever uses it.

We are applying for attendance allowance to cover the cost, as she has chronic pain and mobility issues now as a result of a spinal fracture caused by one of her falls. Have you looked into that as a means of funding and care/household help?

@hoochyhag

What Maxely said ^ But this is an example of supported living where carers are on site to support with low level care etc own flat, rented or bought, communal stuff if wanted. I know this is in Derbyshire, but maybe something like this in her area?

[[https://housingcare.org/housing-care/facility-info-116213-stonelow-court-dronfield-england]]

All the best op

Yes that's a good point, there are 'extra care' facilities now which are for people with a higher level of need than 'normal' sheltered housing. This could potentially be suitable for the OP's MIL but it's still not even close to 24/7 on call support, I know because my own mother lives in one, she gets 4 carer visits a day, one to get her up, washed and breakfast, one short visit at lunchtime, one short visit at teatime and one longer visit to get her to bed, and aside from that she's largely on her own. She is really quite seriously physically disabled and has what we're told is amongst the highest physical needs for someone living outside a care home in our area. There is a manager around Mon-Fri 9/5 and overnight carers on site 24/7 but just because they are there doesn't mean she can just call them whenever she wants and get them to pop to the shops or help her change the batteries in her remote or the million and one things she wants help with - I know because serious words had to be had with her about doing just that - if she falls or is seriously ill of course they'll come but if this became a regular occurrence I am sure they would say the facility was no longer meeting her needs and say she needs a care home - even in an extra care scheme you do still need to be largely able to cope alone (or have a high level of family support I guess). Of course all the care provision is still means assessed and although my mum is on a low income she still has to pay a contribution out of her pension/benefits - plus she has a cleaner and meals on wheels service on top of the carers which she also pays for herself...

Does your MIL agree that she needs help? A lot will depend on whether she thinks she copes or whether she realises that things will have to change.

@maxelly Thank you so much for your detailed reply. I suspect you may be right regarding the assessment being based on the fact that BIL lives nearby. We will definitely request a new assessment and ensure BIL makes it clear that he is no longer able to offer any support.

Unfortunately we don't have a lot of information about the collapses. The last one involved her being unconscious. All we are being told is that it relates to her not taking her medications properly. It doesn't help that none of us have POA so the hospital don't tell us anything and she hides everything from us, as she is still in denial about a lot of it.

Thanks for the immediate suggestions too (key safe, pendant etc). We will definitely implement some changes.

@Stripyhoglets1 Yes we will definitely be requesting a new assessment and making it clear that we can't help as much as she needs. I think I was a bit naïve and didn't realise you had to push for these things and they would just happen, but it is kind of obvious now I think about it.

@hoochyhag Thank you for this, I hadn't realised there were places like this. We will look into this too.

@AlwaysaLittleBitTired I'm sorry to hear you are in a similar situation. That sounds like a great service and I hope your application for the allowance. I will make a note of this and look into it.

@freshcarnation She is constantly claiming to need help, but only seems to want it from family. The cries for help are usually more after the event though and used to guilt trip people, rather than requests for help at the moment it is actually needed. Apparently she has said she won't move anywhere which isn't a great sign. But it would be good to have support in her home so BIL doesn't need to worry so much and so she is safer and less likely to end up collapsed on the floor for an entire day.

Does your MIL agree that she needs help? A lot will depend on whether she thinks she copes or whether she realises that things will have to change.

Is she still drinking? I wonder if the collapses could be alcohol related. My mother has a history of falls, which tend to happen in the evening when there is an open bottle of wine on the table... She is in her 80s and has very limited mobility due to arthritis and previous strokes, so even a glass or two of wine can affect her balance and coordination.

In any case, I would second many of the suggestions already made: key safe so that emergency services/carers can get in without bashing door in; alarm pendant - look up what her local council offers, they are usually called something like 'Careline'; get a care needs assessment - I am surprised that there hasn't been something done if she has been hospitalised after falls, but you can push for it.

And if they carry out an assessment but still find she does not 'need' care, can you try employing someone privately at least a couple of days a week, to be a home help and run errands once your brother is not around?

Also try to set up LPAs for health and finances as soon as possible. Have you looked into whether she is eligible for attendance allowance, which will help pay for a bit of care?

Hopefully you will get a care package sorted, but the calls are mainly a maximum of 4/day and 30 mins each - there is an awful lot of time alone and an awful lot of hours when your bil could be called still. I insisted on the fullest package possible, and yes had to be more than firm I couldn’t just pick up and I also have cleaning/social calls booked separately and privately, but I still spend a lot of time dealing with shopping and admin and attending appointments, plus answering calls from carers or random people for random stuff - also been called over at night 3x in 2 weeks. Just so you know the care package resolves a lot but not everything. So be clear what you can put in place, and also what you can do - then halve what you can do - honestly the best tip I had. Good luck with it all.