Care options for bedridden mil and sick fil who was her primary carer

[thisoldchestnutyetagain]

Need advice and options please as we are out of ideas for this situation. Bullet pointed for ease although warning, still LONG. 

Mil has been fully bedridden for three years at home.

Primary carer for two years was Fil, until he couldn’t cope.

Now they have paid-help (Caremark) twice a day to help shop, clean up MiL etc. She needs EVERYTHING doing for her, she cannot leave the bed. She spends her time sleeping, on iPad, doing an occasional crossword…

FiL has had a number of bad spates of illness necessitating hospital stays in the last four - six months.

He has been in hospital for the last two weeks with infection, delirium…from which he is now medically recovered but 

He now needs up to six weeks rehabilitation and is still very confused / delirious.

We await assessment of if he can live at home let again once more look after MiL. He is no longer allowed to drive.

We have been told his delirium WILL recur.

My DP and BiL have been dividing care - both have jobs and families and live two hours drive away from their parents.

That’s the general situation. The further complicating issues:

Mil is refusing ALL conversations about any kind of respite or longer term nursing in a care or nursing home.

Mil would instead like to increase care at home in order to stay at home. But we believe live-in care is not possible due to size of house / one bathroom.

DP and BiL are under pressure from work to let them know a pattern of working and their absences strain our own family lives.

For those reasons they are unable to keep up their constant presence at the parents’ house and travelling between there, our homes and hospital - which with at-home care potentially leaves MiL home alone and vulnerable for long periods of time. We’re not sure if this is even legal, never mind ethical!

Crazily, she seems happy with this concept if it means she can stay home.

By far the safest option is to have MiL in respite care while Fil either recovers to go home or recovers to join her. 

Or she ups her paid care at home in order to be safe and clean, and also help relieve her sons. However, as advised by the hospital FiL’s condition will recur sooner or later necessitating dashes again from DP and BiL. 

Neither could live with us.

Help. Our brains are fried thinking of all possible options and outcomes. Have you ever faced a similar situation? What did you do?

Thank you. 

[Wrongsideofpennines]

There are many people living bedridden (or hoisted to a chair) with just carers visiting daily. The maximum number of visits council services would fund in this circumstance would be 4 times a day. Which is legal and acceptable if this is what your MIL wants. If she has full mental capacity then she is within her rights to decide this. Things like pendant alarm/falls detector/mobiles etc so she can summon help in a emergency would be prudent.

Its unlikely that a live in carer would want to take on the role without a separate bathroom but you would be privately funding it so they can decide themselves. MIL isn't actually using the bathroom so it would be theirs in theory.

My concern would be that if FIL is deemed safe to return home whether he/she expects him to pick up his caring role when he returns, and that may well fall apart quickly if they cancel any care increase. He may also need his own care which may affect financial assessments for both of them unless they would both be self funding all care.

[rookiemere]

If MIL refuses to go into a home then all I think you can do is increase the carers visits. Unfortunately that means she will be on her own for long periods, but if that's her choice then it seems you might as well try it until the wheels come off the bus again.

[Babymamamama]

You could possibly get a live in Carer. They are entitled to breaks so you’d need a back up Carer to go in for a couple of hours daily. That would mean they would be covered 24/7. It’s not cheap but would free up the sons’ time.
Maybe get a couple of agencies to do their assessments to see if that is feasible.
Yes the delirium can speed up things like dementia sadly not sure if that’s part of this picture?

[DSD9472]

Its an awful situation. So MIL is bedbound, yet only having a carer twice a day? So for 12hrs, she is sitting in her own urine and faeces until the carer returns? Who is turning her during the night and the day time to prevent bed sores? Who is feeding her a 3rd meal of the day, if only twice daily visits? Even IF she could afford 24hr carers, there would normally be at least 3- to cover all shifts. Not just 1 living in!

Even IF FIL recovers somewhat, its clearly too much to be MIL's full time carer. Are adult social services involved? I'd think respite is the only option short term, with plans to a permeant placement unfortunately- for both of them.

[thisoldchestnutyetagain]

@DSD9472

Its an awful situation. So MIL is bedbound, yet only having a carer twice a day? So for 12hrs, she is sitting in her own urine and faeces until the carer returns? Who is turning her during the night and the day time to prevent bed sores? Who is feeding her a 3rd meal of the day, if only twice daily visits? Even IF she could afford 24hr carers, there would normally be at least 3- to cover all shifts. Not just 1 living in!

Even IF FIL recovers somewhat, its clearly too much to be MIL's full time carer. Are adult social services involved? I'd think respite is the only option short term, with plans to a permeant placement unfortunately- for both of them.

Thank you for commenting! She is in a hospital bed. No turning. Carers have been in addition to FiL care until last few weeks, but it now seems unlikely they can return to that situation.

[DSD9472]

She is in a hospital bed. No turning
Sorry, what do you mean no turning? Does she have an air mattress? Is she physically able to reposition herself in bed, roll side to side, move up to sit up, lie down herself etc within the bed without assistance? If not, I would absolutely be concerned about skin breakdown!

[AluckyEllie]

A live in carer might be an option but they are unlikely to turn/clean MIL on their own if she is unable to help. You’d need another carer to visit as well. I imagine your FIL has been doing unsafe manual handling for the bits he’s been doing alone- which is absolutely fine if you are happy to but a professional isn’t going to risk injury.

Eventually FIL will become ill again and your DH/BIL will be traipsing up and down the motorway for 2 hours at a time again. They both need to enter care/residential home or move closer to you so it’s not such a burden of travel. I imagine they won’t agree so it’s very hard, either you let them fail and end up in crisis forcing a move or you exhaust yourselves and likely become resentful. It’s really hard, you have my sympathies. If only they had thought/planned about this a few years ago
but unfortunately many people put their heads in the sand about the inevitable aging/declining health.

[Soontobe60]

Why is she bed bound? I remember my grandma, aged 101, completely unable to walk, weight bear, speak, with advanced dementia. But she did not spend all day in bed. Her carers got her up every day, she was sat in a suitable chair, had her meals in the dining room despite having to be fed. It’s incredibly unusual for someone to be medically bed bound unless they are in a state of unconsciousness.

[onetwothreeee]

Soontobe

My Grandfather is 95, lives in a nursing home (has full mental capacity) but has not been out of bed for a year.

(he can't adjust himself, and he has an air mattress that vibrates to prevent sores etc)

He can't, and almost certainly wont, ever get out of his bed again

[KestrelMoon]

What about assisted living? Its a step between home and care home.

https://www.ageuk.org.uk/information-advice/care/housing-options/assisted-living-and-extra-care-housing/
“You live in a self-contained flat, with your own front door, but staff are usually available up to 24 hours per day to provide personal care and support services. These are tailored to you and can include help with washing, dressing, going to the toilet and taking medication. Domestic help, such as shopping and laundry, and meals may also be provided.
Common features of assisted living accommodation include:

• help from a scheme manager (warden) or a team of support staff 
• 24-hour emergency help through an alarm system.
• social activities arranged for the community.
• a minimum age for residents, usually 55 or 60.
• self-contained flats allow you to stay independent.
• communal lounges allowing you to socialise as and when you feel like it.
• Some extra-care housing is available to buy or rent privately and some is available from the local council following a care needs 
• assessment, but it isn’t available in every area.

Unlike sheltered housing, assisted living housing is regulated by the Care Quality Commission (CQC). They inspect the facilities and provide ratings.“

They’d sell their home and could move closer to your DH and BIL. There would be a chance for FIL to socialise instead of being trapped as carer to MIL.

[secondscreen]

Family needs to withdraw - if MIL thinks she can manage with live in carers then let her try, and pay for it.

[KestrelMoon]

What your DP and BIL need to do is request adult social services do a full care needs assessment on MIL and FIL. The care needs assessment will recommend in home care, assisted housing or residential care. They need to make it clear that no one is available to be an unpaid carer for MIL and FIL.

[Octavia64]

If MIL has capacity then yes she is allowed to decide that she does not want to go into a care home and would rather have carers coming in.

She will be left alone for long periods of time. This is legal. In general it is considered ethical to preserve agency for as long as possible - so yes she is ethically allowed to make bad decisions.

At the moment she is not facing the consequences of her choices because her family are filling in. However, this cannot be kept up.

So she needs to be left.

[Flopsythebunny]

@Soontobe60

Why is she bed bound? I remember my grandma, aged 101, completely unable to walk, weight bear, speak, with advanced dementia. But she did not spend all day in bed. Her carers got her up every day, she was sat in a suitable chair, had her meals in the dining room despite having to be fed. It’s incredibly unusual for someone to be medically bed bound unless they are in a state of unconsciousness.

My mil was bedbound for the last year of her life. We had a hoist but she got so distressed when using it that we made the decision to stop using it. We had a hospital bed with an air mattress so she didn't need turning.

[olderbutwiser]

She clearly has capacity to make her own decisions about care. She can up her carers to 4x a day (more if she’s self funding and can afford it) and your DP and BIL need to step back from personal care, work out a sensible pattern of social/admin visits and stick to it. See how it goes. She may be perfectly safe and happy with that.

[CrotchetyQuaver]

I think in the short term I'd be getting social services to assess the situation. When did she last see a doctor? I also think respite care for her until you know when/how things will be for your FIL would be the best way to take the pressure off your DH and BIL. It may be her wish to stay at home but it doesn't sound like the house is suitable for live in carers which might be necessary for FIL when he gets back. They might both have to move into a care home of some sort as they can't manage at home any more. Always hard when something like this happens and you need to decide what's in their best interests which is often not the same as they would like.

[Owl55]

Could you ask the hospital to send your dad for convalescent as he will be unable to be a carer to your mum and his health needs take priority, meanwhile put extra carers in place for mil , I agree social services need to do a full assessment of their care needs and will explain to mil care options .

[Alex Drake]

I'm in Scotland so not sure if it is different elsewhere but I'm pretty sure that those of pension age are entitled to a personal care package from their local council. This is only for personal care, showering, toileting / changing pads etc and a maximum of 4 visits a day. Any other care type needs, eg shopping, cleaning, meal preparation etc has to be paid for.

Has your MIL had a needs assessment done by her local council? Arranging this would be my first port of call if not already done.

My Mum has had no mobility for a number of years now and now has severe dementia also. She has carers 3 times a day for personal care and these carers also use a hoist to move her into her living room during the day, she has a hospital bed in her bedroom. My Dad remains at home 24/7 with her and prepares all meals (my Dad is currently, thankfully, very able). Twice a week my mum goes to respite centre, this has to be paid for and is funded from my Mum's PIP (my mum's PIP continued into pension as she had a valid claim while of working age)

Does your MIL receive Attendance Allowance? If not, it would be worth starting a claim as this could help pay for additional care needs like a home help for cooking/ cleaning.

[TheSoundOfMucus]

@Alex Drake the free care is only in Scotland. In Wales it is chargeable but a maximum of £100 p w if you have over 23k in savings, less if you don’t. House is not taking into account in Wales for care at home. In England, you fully fund if you are over the threshold, whatever that is. Not sure about Northern Ireland.

[thisoldchestnutyetagain]

Thank you for your time and replies! We are leaning towards maximum care at home as that is what she wants, and we believe she has capacity to decide. Seven days a week and that helps relieve other family members. Assisted living also a great idea, if Fil also has care needs after rehab - hopefully somewhere that can manage their differing needs. A new in-home care assessment needed first. Thank you.

[KestrelMoon]

Don’t forget FIL has a say too. This is a couple and it is not all up to MIL what decision they make in regards to living situation and a care package.

[thisoldchestnutyetagain]

@KestrelMoon

Don’t forget FIL has a say too. This is a couple and it is not all up to MIL what decision they make in regards to living situation and a care package.

Absolutely. We hope his confusion / delirium fades away. We believe another step may be a best interests meeting if not. Thank you.

[AnnaMagnani]

By the sounds of it, MIL is a long way past the level of function needed for assisted living. This is generally for people who need some help but can go out for walks, take part in activities in the centre and so on.

Fully bedbound = care home with nursing.

It's not 100% clear that assisted living would be an option for FIL either. Have all his admissions been for infections, does he have underlying health conditions?

[KestrelMoon]

Fully bedbound = care home with nursing.

It’s a little more complex when you have an elderly mixed sex couple who do not want to be separated for their final years.

So long as one of them is fairly mobile and the bedbound one is mentally all there so can hit that call button, then assisted living with extra support for the bedbound one is an option.