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?

@viviennemary, sorry about that. I see exactly what you meant now. I get a bit fired up about AgeUk!

Do YOU think she has capacity?
Do you think she fully understands all the risks and is weighing them up and making an informed choice to stay at home?
Have you seen a copy of the capacity assessment?

Does she have a cognitive impairment of some kind that could be affecting her decision making?

If not… and if you think she really does have capacity then no one can force her into a home.

In my experience the situation won’t stay the same though, she will reach a point where an agency refuses to care for her at home, or she requires hospital admission again, or her needs change,
The situation does not sound sustainable so in a way take heart that something is going to change/give.

If you have concerns about her capacity then challenge the capacity assessment.
Ask social services to do another one.

There is the issue of ‘executive capacity’ I.e. where someone says all the right things.m, says what they will do etc, but their actions don’t follow through on this.
They can use evidence of her actions and incidents at home to evidence lack of capacity,

Perhaps our alarm system was diffierent but we had to have neighbour and family answering alarms. Not ideal if it happens often and family is not nearby.

saraclara

I wasn't responding to you, but to the poster who suggested that Age UK would provide a falls alarm, which is what they do in some areas but not all.

I haven't read the full thread but what I will say is that getting power of attorney for health and finances doesn't change anything at all whilst MIL has capacity.

I'm a social services OT and while social workers are often painted as the devil, if someone has capacity they have to follow their wishes putting in support to meet their assessed needs. You and your husband are absolutely not obligated to provide support, and the locality where I work it is not expected from family.

It sounds like an OT assessment is required to assess why she's falling from bed and to consider any other equipment that could be provided to keep MIL safe at home. This could include a hi-lo hospital bed to be set at the lowest height with a falls mat meaning that the risk of injury is reduced or bed rails although they wouldn't be appropriate if someone was actively trying to get out of bed as they could act as a restraint if they're unable to put them down independently. Depending on how she transfers and if she has rehab potential bed based rehab might be an option for her.

If you would like to ask to ask me any questions feel free to give me a message as this type of situation is my bread and butter.

I would try not to get too distressed by DMIL - there is no magic wand to make her fit and able again. It's hard to accept your DM in such dire straits but this comes with ageing for a lot of people.
She will probably continue until the next bad fall when she will end up in hospital again then will most probably not be fit enough to go home and go to a care home. Best to find a good one now.

Was she mobile and not doubly incontinent before going into hospital ? Two months is a long stay and she will have quickly become very deconditioned. Was she offered rehab at all or was she deemed to unlikely to be rehabable ?

If she is falling out of bed, is she attempting to get up herself or rolling over and slipping out ? Is she realistic about her physical abilities or does she believe she will get better in time simply because she is home ?
Did she have a diagnosis of delirium at all when she was in hospital ?

[quote endofthelinefinally]@godmum56
I already explained that my opinion isnt the legal definition. Just my opinion. I know that people are allowed to make dangerous/ unsuitable decisions.[/quote]
But your opinion on this is a moot point. The social worker cannot go against a capacitous adults decision.

Age UK varies a lot for good reasons. Where my FIL lives local Age UK branch is one part-time worker and volunteers. Where I live they have a number of staff and volunteers.

OMG! I could have written this about my own experience.

My MIL lived locally but slowly deteriorated, eventually ending up in hospital following a fall. She had been getting more and more confused and forgetful but insisted she wanted to go home. SS got involved and said as she had mental capacity (even without any assessment) and that her wishes had to be respected.

We arranged for live in care but it just didn’t work. MIL was also incontinent - needed her sheets changing sometimes 4 times a night. Her bathroom was inappropriate for her physical needs but she wouldn’t agree to any work being done so was often quite smelly. She kept her carer up all night because she was confused about what time of day it was. The carer was supposed to have a couple of hours break during the day but MIL kept calling for her. She still regularly fell and we got calls day and night to help the carer pick her up.

In the end, we had to tell SS we were not getting involved and they would have to deal with the issues. We used to pay the care agency ourselves but in order to firc3 the matter, we stopped paying. SS contacted us about the outstanding bill so I told them they would have to as MIL to pay it as “apparently she had mental capacity” MIL didn’t have a clue how to pay anyone! It was brutal having to do that to a family member but it was the only way we could get MIL into a CH with the right facilities and enough staff to suit her needs.

We were finally successful and she got the care she deserved so her last months were so much better, but it was awful having to do battle with the authorities who insisted they knew best.

@frumpety

Was she mobile and not doubly incontinent before going into hospital ? Two months is a long stay and she will have quickly become very deconditioned. Was she offered rehab at all or was she deemed to unlikely to be rehabable ? If she is falling out of bed, is she attempting to get up herself or rolling over and slipping out ? Is she realistic about her physical abilities or does she believe she will get better in time simply because she is home ? Did she have a diagnosis of delirium at all when she was in hospital ?

Was she mobile and not doubly incontinent before going into hospital ? Two months is a long stay and she will have quickly become very deconditioned. Was she offered rehab at all or was she deemed to unlikely to be rehabable ? If she is falling out of bed, is she attempting to get up herself or rolling over and slipping out ? Is she realistic about her physical abilities or does she believe she will get better in time simply because she is home ? Did she have a diagnosis of delirium at all when she was in hospital ?

She was slightly mobile (could shuffle a few metres, in pain). She was mostly continent.
She had 3 weeks rehab after hospital. She's now into week 2 of a 4 week reablement programme.
We believe she fell out of bed because she was trying to get to use a loo.
I don't know if she thinks she'll get better.
We don't believe she is delirious.
She has a careline pendant, but didn't use it when she fell out of bed. She was wearing it when we found her.
I think she is just so desperate to get out of hospital, that she's saying she wants to go home without thought of the consequences.

Thank you all so much. This is hugely depressing reading, but I appreciate your thoughts, suggestions, good wishes.
There are some tactics and contacts that we're going to pursue.

DH has sent an email to the social worker to say that neither he nor I can respond to calls for help. We'll visit socially and to do shopping, housework etc. He emphasised that we don't believe she is safe at home. She is not getting care to help her have any sort of quality of life.

This is heartbreaking.

Can you have a frank discussion with her about the realities that come with her decision to be at home? Capacity is linked to making an informed choice. Knowing the options and the potential consequences. It's very important that she has the full picture in order to decide.

Also bear in mind, a lot of elderly people say they “want to go home” but it doesn’t always literally mean that. What they mean is they want to return to a time when they were happy and safe etc. It might be worth gently asking MIL where “home” is. I was told this by MIL’s care home manager and interestingly, when I asked MIL about her home, she told me all about her house in Hampshire 40 years ago!

@Gazelda

Thank you all so much. This is hugely depressing reading, but I appreciate your thoughts, suggestions, good wishes. There are some tactics and contacts that we're going to pursue.

DH has sent an email to the social worker to say that neither he nor I can respond to calls for help. We'll visit socially and to do shopping, housework etc. He emphasised that we don't believe she is safe at home. She is not getting care to help her have any sort of quality of life.

This is heartbreaking.

I think you’re doing exactly the right thing. Sadly, if you are too helpful, the authorities will let you bear the burden. It’s desperately sad but you need to look after yourselves and your child first otherwise you will be burnt out before long too. Once your MIL is at this stage, she won’t get better, only worse, so you need all the help and support you can get - even if it means getting a bit stroppy!! Xx

There's only so much SS can do though.

You and DH need to talk to her, explain you can't keep this up and get her to agree to go in to a home.

I've supported discharges from hospital with people like your MIL who have absolutely no friends, family it neighbors to do any of it. I've felt they should be in a home but because they have capacity and have refused, I have to send them home.

What should happen is that the state should fund more care, or homes should be better so people don't see them as a place of last resort.

You have done the right thing with that message OP. In my experience the intransigence is often not social services but the person needing care.
I've lost going of the time my parents have told carers coming under a reablement package they aren't needed which has usually rapidly resulted in another hospital stay. And they hardly ever call DB who lives local to them gor help - just the 2 or 3 times a day and the regular phone calls to me, over an hour away, because the tv/heating/washing machine isn't working (usually solved by switching on) or dad has fallen yet again. But they "don't need help", they think they are managing fine on their own.

This is a link to the Montreal test which was used by a psychiatrist to see if a family member had dementia here in Scotland don't know if it is used all over but I woudn't be surprised.
www.parkinsons.va.gov/resources/MOCA-Test-English.pdf
It sounds from what you say that your DMIL would struggle with parts of it. Just posting to give you an idea of her capabilities.

Can I just point something out. Capacity is a legal term with all sorts of ramifications and because determining that someone lacks capacity can leave them open to abuse, there is strict guidance on assessment. If someone’s capacity is being challenged, ultimately only a court can make that determination with input from specialist assessors.

When my mum was diagnosed with vascular dementia I was advised to take out a lasting power of attorney while she still had capacity - the fact that she had been diagnosed with the condition in no way spoke to her capacity at the time of her diagnosis. An assessment determined that she had capacity - and two years on from diagnosis, she still has it. Even though I have her power of attorney, mum still makes her own decisions until such time as an assessment determines that she can no longer do so unaided. Depending on the health condition, the capacity to make decisions can come and go, depending on the complexity and the attorney is responsible for ensuring that the person is as involved as they are able to be in any decision taken on their behalf. The OP is in a difficult situation and from her post, it sounds as though her MIL is a long way from losing capacity, so unless and until she can be persuaded that full time care is in her best interests, no one can force the issue. A PP suggested that if she is admitted to hospital after a fall, the hospital can prevent her from going home. This is incorrect. If she has capacity, they have to allow her home with appropriate care services in place. I don’t think care homes are seen as a last resort these days - IME it’s considered that the person does better with support in their own home as far as possible, and reasonable. A difficult situation all round.

Yes you can have dementia and still have capacity.

And capacity is assessed based on the particular decision do you can have capacity for some things and not others.

@countrygirl99

And capacity is assessed based on the particular decision do you can have capacity for some things and not others.

It's both decision AND time specific. Some people have capacity in the morning, but lose capacity as the day goes on. Others fluctuate hour by hour. I've assessed someone as having capacity, got them to determine their decision to the issue at that time and they've lost capacity 30 minutes later. I still have to honour that decision and could only go against it if circumstances change.

@joborplay. Yes so many people think that it's black and white, that you either do or don't have capacity and it is so complex. Going through this with my parents at the moment.

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.