Care levels insufficient

[lessthanBeau]

Aibu to think if you are unable to be allowed out unaccompanied as you are a danger to yourself, if you cannot make any meals for yourself, if you cannot bath and clean yourself properly, you need help with your medications, you cannot make financial decisions and the drugs you take knock you out so hard that you wouldn't hear a smoke alarm and may not be able to escape even if you did hear it. Then you should not be living at home alone with only home care visits.
something has happened between Mil and fil who was Mil primary carer along with four home visits per day, I don't want to say what as it's personal information to them, however it has meant fil has left the house and the la has assessed Mil as being able to live alone with just the care visits during the day. Mil has Huntingtons which will progress even though she is still mobile(only just) at the moment. My dh and bil have set up motion sensor cameras to be able to watch her, she also has lifeline button round her neck and they think this is enough and she'll be fine, dh does stick his head in the sand where Mil is concerned, Mil and fil have both been subject to financial abuse from a previous carer in the past and fil has full capacity so if this could happen when he's there how vulnerable is Mil going to be alone? She does refuse to go into a carehome but I think she has been assessed previously as not having capacity. they are talking about her going into a warden controlled accommodation but still with the same care package to me that also sounds like not enough how is it different from being at home with the lifeline? Also fil is an alcoholic and was told that if he was discovered drunk while caring for her then they would take Mil into full time care regardless of his wishes to keep her at home, so with the problems outlined above and ss previously saying if he can't look after her full time she had to go into a home, does this care plan seem feasible to you?

It sounds as though she really needs to be in full time care. I'm sorry, awful situation.

I agree that sounds insufficient. But I'm going to play devils advocate here. Your Mil wants to be in her own home, even if that entails some risk.

If infirmity happens to you, you realise that being safer isn't your main priority, and being where you feel comfortable is far more important. There's a reason why many people say they don't want to die in a hospital ward. Hospitals are safe and full of doctors and nurses, but they are impersonal.
I realise its tough for relatives to deal with. But it may be the case that someone living with Huntingdons has spent a lot of time thinking things over and deciding to have some control at the end.

Why not give it 4 weeks and see how it pans out? It may be that she realises if she falls and is injured, the decision will be taken from her, and she may change her mind and agree to more support.

I think if she is saying she doesn’t want to go it should be put off as long as possible. Yes, potentially this could shorten her life, but a lot of people (including a terminally ill relative of mine at the moment) would rather have a shortened life at home than a prolonged life in a care home. It’s not much of a life in a care home, it’s often more surviving than living.

And you can give DH and BIL your views, but ultimately it’s their decision.

What does she want? You say FIL doesn't want her to go into care, but what does she want?

I understand how scared and worried you must feel, and I really feel for you as you obviously only want what you think is 'right' for her, however you need to think very hard about what is about what you want, your 'piece of mind' and how you feel, and what is about what she wants and how she feels.
It's what's left of her life and her demise and you have to try and remember that what you want isn't always going to be the same.

It may be that SS are trying to save money, accommodate her rights, or even know the only current place for her is one of the really awful places and are trying to do her a favour and buy time for a beeter place to be available, knowing her situation will force hands soon enough

The treatment and quality of life in many care homes is so poor that many would prefer both risk and loneliness, and ultimately an earlier demise, than be stuck in one watching one's rights and quality of life systematically stripped for the easier running and profits of a business and being at the mercy of poor and angry staff.

I'm disabled with direct experience of what can happen, and I know that I'd have had a better quality of life and more rights in prison.

No question in your mums position I'd be fighting for my basic independence no matter what, and because of what I've already experienced, I'd take matters into my own hands if need be.
I can't begin to tell you just how miserable an already reduced life can be made to be.

"being safer isn't your main priority, and being where you feel comfortable is far more important"

^ This

I would rather live out my old age in my own home, letting my physical/mental health and declining ability to self-care bring me to a natural end, whenever that may be, and however unpleasant/messy to observe from the outside. Rather that than be kept like a living prop in an alien shared home, fed and cleaned to a clock by rotating staff, for years and years and years.

Just my own opinion, and I'm sure many others would prefer to live in a home and be very happy there (as I'm sure many are). But it's not for me, I would absolutely rather have a slow, naturally declining (or suddenly ending, ie. via fall) death at home. I think we should be more prepared to listen to what older people tell us they want, and less fixated on what we want for them.

Agreed. I too would prefer to live out my life in my own home, with as much autonomy as I could manage, and the prospect of that stage of life being shortened as a result is a bonus. I do not relish the prospect of being imprisoned in a care home, with no control over what I do or eat, and this non-life being extended because I am "safe".

It really is about what MIL wants.

I think there's a point at which it is not simply a matter of one's preference. If you need full time nursing care then that won't be provided by the state in your own home. You can stay at home if you can pay for the care needed over what the state would provide, otherwise you'd be moved to a nursing home. At least that's my understanding from the end of my mother's life

The third choice would be to stay at home with the maximum care provideable (ie. 4x/day), and with some care needs chronically unmet, leading to an earlier death.

I think that's the option many people actually want (including myself), but the people who care about them (understandably) find the hardest to accept/tolerate.

I'm not sure the State would be able to allow that. If someone is assessed as needing significantly higher care or nursing than is available in their home and they have no other means to provide it, the State would be required to find a way to provide it. If they refuse residential placement there may then be a question over their capacity. They, or their relatives, can pay for extra services themselves. In theory that is

Has she had a recent capacity assessment and does anyone have power of attorney. If she has capacity and wishes to stay at home that is her decision. Has she had a home assessment to see what equipment she could have to help her stay at home.

If she does have capacity, then she would do well to put her care wishes into writing now. LPA for health and welfare at the least.

If you are concerned about her you can call the social,services and ask for a home assessment, there is plenty of advice available on the Huntingdons Disease Society website. You can also ask if the gp has seen her recently. A warden flat offers a bit of security to people but only if the warden is available onsite to deal with emergencies. What's the purpose of the motion sensor camera,

There are many people who successfully live in their own homes with the same sort of needs you describe and worse, and the same number of care visits or less. As a social worker nothing you describe immediately jumps out at me as definitely triggering the criteria for residential care.

She may be unsafe to go out on her own, but that is only an issue if she is actually trying to go out on her own. All of the other stuff is fairly normal care needs that can usually be met at home.

The tipping point for residential care from a local authority funding perspective is usually when a person has night time needs that could only be met in 24 hour care, or there were high falls risks that couldn't be safely managed at home (e.g someone who doesn't remember they can't walk without a stick and keeps attempting to) or has needs that can't be met by 4 carer visits and assistive technology inbetween.

As the law stands currently even if someone lacks capacity around their care needs their wishes should still be taken into account as far as is safe and practicable unless the risks are so great that abest interests decision is made on their behalf to override their wishes.

If things change then the current care plan can be changed, it isn't a forever decision, it is just the decision for now. It may be a very short term decisions to see how she gets on so that they can show they have given her the best possible opportunity to live independently first before deciding she needs to go into residential care. Presumably she would object to going into care so the local authority need to show they have explored all of the least restrictive options first before they will lawfully/morally be able to place her.

Thanks hatgirl, great explanation, much better than I could give. I had forgotten about nighttime needs and least restrictive setting.

If she has capacity she can live where she wants. Even without capacity each decision should be considered on an individual basis (so she will have capacity to make some decisions and not others) and she still had the right to make ‘unwise’ decisions.

I certainly think it sounds like something that should be tried if she wants to stay at home. My parents elderly neighbour lived lived with a similar level of need very happily for years (plus my parents popping in each day). She only needed more at the end - (for about the last 6 weeks) when my mother nursed her so she could stay at home.

It is possible to have extensive care packages at home as well. My son’s care package that is in the process of being set up provides 24 hour 2:1 care in his own house.

If a person lacks capacity around their care and does not want to move into a care home then an application needs to be made to the court, even if thought to be in their best interest. A judge would want to know that everything had already tried and failed.
With regard to fire risk telecare can be put in place to minimise risk.

Exactly what @hatgirl said. I am also an Adults social worker.

My mum went home from hospital with secondary breast cancer which had paralysed her legs and she only had the use of one arm with four care visits a day. She would rather have died sooner than be in a care home. It wasn’t ideal but what she preferred given the options available.

If there is money there op for full time caters if you don't want your mum to go into a home ... sounds like she would benefit having 24 hr support.

Not necessarily, @Beacauseisaidso. If a mental capacity assessment indicated the person did not have the capacity to decide where they lived, a best interests meeting is held with all involved parties, an advocate would be appointed for the person if they had no family, and often even when they do. It would only go in front of the court of protection if someone disagreed with the decision being made, if someone has LPA for welfare they are the decision maker, otherwise it's usually the social worker.

If the decision was to move the person to a placement such as a nursing home, contrary to their wishes, there would then also be. DoLS assessment under Deprivation of Liberty Safeguards.

Some of the issues you think your MIL is facing can be addressed by telecare. If she is at risk of falls then she can have the pendant around her neck or a wrist worn falls detector if you are worried that she may become unconscious from a fall. Forgetting her meds may be addressed by a pill mill which can buzz until she takes her meds or you can record a familiar voice saying something like 'mum it's time to take your tablets'. The pill mill only releases the tablets needed at that time.

If she is unlikely to hear a smoke alarm would she wake with a vibration under her pillow? If so a fire angel will help with that.

If she is unable to go out without support and you're worried about her doing so then door sensors can be fitted.

There is a whole host of technology available through your local telecare team that could support her to retain as independent a lifestyle as possible at the moment. Her SW of a duty social worker will be able to sign post you to this.

Her needs will change and therefore the support she needs will change.

SS are not there to meet the social needs of a person, budgets do not allow for that anymore. Those needs are expected to be primarily met by family and friends. The SW or duty should also be able to point you to a department or agency that has information on voluntary or private organisations that can meet her social needs in hobbies that she is interested in.

Meant to add, if she cannot make meals for herself but can use a microwave then there are companies that deliver ready prepped meals that only require microwaving, such as Wiltshire Farm Foods.

If the person doesn't want to go even if everyone else agrees, there should still be an application to the court. Lots of local authorities don't do tjis but they should. Dols is for anyone living in a home who lacks the mental capacity to consent, regardless of it they are happy to be there.
Court of application is also required for anyone living in a home environment who lacks capacity is under 24 hr supervision, including telecare .