MIL with Alzheimer's refusing to go into a care home

[Mummynumber2]

I'm just wondering if anyone can help us with the legal side of this.

MIL has had Alzheimer's disease for several years and it's now got to the point where there is no way she can live alone any more. She doesn't know where she lives, who her family are, what year it is or what happened 5 minutes ago. Most of the time she thinks she lives with her grandmother and there have even been occasions when she didn't know who DP was.

So, for the last few months she's been staying with DP's sister, who's had to take unpaid leave from work and we're helping out as much as we can during the weekends. She can't be left on her own even for a few minutes as she tries to leave the house and she doesn't know where she is. To be honest this arrangement really isn't working for anyone and we've all come to the conclusion that it would be the best thing for her to be cared for properly in a home.

Several social workers have come to assess her and the one who visited most recently asked her if she was happy to go into a home and of course she thought it was a terrible idea as she thinks she's completely capable of looking after herself and doesn't realise that she has an illness. She also told the social worker that she had to carry on living where she is because she needs to look after her grandmother. The social worker has now told us that we can't force her to go into a home against her wishes despite the fact that she quite obviously can't look after herself. I'm just wondering if anybody else has been in this situation what we can do now!
Thanks for reading.

I think most people sell it as 'going somewhere for a short break' rather than going into a home - certainly thats what my grandmother had to be told to get her to go. After a few hours, she didn't remember she'd been anywhere else

That's the way we've been playing it and I'm absolutely sure she'll be fine when she's there. She'll probably think she's on holiday, which really can't be a bad way to spend the last years of your life!

The problem is the social worker wants her to agree to going into a home before she finds her a place and says it would be illegal for us to leave her there without her first agreeing to it.

Sorry for bumping!

My mum was in a similar situation. Unfortunately she had a bad fall in her home, was admitted to hospital and because there was no-one to care for her 24/7 at home, the hospital discharged her to a care home as a place became available.

Obviously not the ideal way forward, but it was the best for everyone. I cannot ever recall a social worker asking my mum for permission - I don't understand how they can do this, after all you have to be of sound mind to make a decision of this nature. She certainly would not be allowed to make a codicil to her Will etc as she was not of sound mind.

I would suggest that you ask for an assessment by the team at the hospital who deal with dementia care (I cannot remember what they are called now) or by a psycho-geriatrician. Although the social worker may say she needs consent from your MIL, how can she get it from someone who does not even know who her own family are? After all, she is not a clinician is she?

Your mother is clearly a risk to herself and I am very concerned that the social worker has effectively abdicated responsibility for her, whether it adheres to the "rules" or not. She is not of sound mind and cannot take decisions for herself.

My mum gave money to people who came to the door, regularly locked herself out in the cold, fell in her back garden and was left in the cold for hours. She thought she lived in a town 80 miles away and was getting the bus there. She could not tell the time, count money, could not work the TV or even the kettle, let alone bathe herself or make a meal. She became aggressive.

Also, do remember that carers need a break and a route you could take is respite care as effectively your family member really does need a break.

I hope you can resolve your difficulties for your MIL's sake and your families.

Does Age Concern have an advice line?

I would try them.

Actually, I don't think they're called Age Concern anymore, I think they merged with Help The Aged and now have a new name but sorry I can't remember it.

I forgot to say, rather than Age Concern, you could try the Alzheimer's Society. Age Concern do not specialise in dementia care.

I am sure they will be able to assist you or point you in the right direction. They support those with dementia and their carers and will try to achieve or assist you in the outcome best for you and your MIL.

social worker should assess if she has the mantal capacity to make that decision and if not a best interest decision can be made on her behalf.
This is a very common situation so sw should be well aware of this

We had exactly the same problem with my grandma, I was so cross with the social worker at the time. We took Grandma to look round hte home with the social worker there and asked questions to Gran like "isn't it nice", "wouldn't you like to stay here". Gran was a bit bemused but being polite agreed with everything I said enough to please the social worker.

Of course once the social worker had left she was kicking up a fuss refusing to go but too late by then and we moved her in. She was fine once she was there - well as fien as anyone with alzheimers is who can't understand why her DH who has been dead for 10 years hasn't come abck from work.

Sorry you're going through this. You might need to speak to your MILs GP and get him/her on board. Maybe if they do an assessment of her understanding that might help?

Thanks for all the replies. I'm so sorry to hear other people have been through the same thing. It's so sad to watch someone just disappear so quickly. I hadn't thought about contacting Help the Aged of The Alzheimersr's society, thanks I think that would be a good idea.

I do think that maybe the social worker is trying to stall things as she has told sil that mil isn't a priority as she has care at the moment. The problem is sil can't carry on looking after her because at some point she has to go back to work! We're having her most weekends to give sil's family a break but to be honest that's becoming a real strain on our family (especially as I'm 6 months pregnant and we will need the room she sleeps in for the baby fairly soon).

Mummy they are not going to put her in a home whilst her family are providing her care for free. I think you will probably have to "evict" her

I know Cargirl. It's very sad but probably true. The problem is we can't leave her on her own anywhere as she won't know where she is and could end up in a dangerous situation within minutes. But we can't really go on like this so something needs to be done....

The social worker doesn't seem to have told you that actually you can force her to go into a home against her wishes. You do it by having her "sectioned" under the mental health act - two doctors have to agree that she is a danger to herself or others because of her mental state. I know that sounds a harsh thing to do, but it's quite a common thing to have to do for a relative with dementia, if they need to be looked after fulltime and are unable to accept that fact because of the dementia so won't consent to going into a home. In fact, people who are in care home on that basis have more legal rights than the ones who go in willingly!

Get an LPA which gives you the power to act for her in all health/welfare issues and you can make that decision.

Hi, Adult Social worker here. Definitely my field. She doesnt appear to me from your scenario, as if she would meet criteria for Mental Health Act assessment.

But you do need to speak more to her CPN (Community psychiatric nurse). If she doesnt have one, ask her GP to refer her to the local CMHT (Community Mental Health Team). You are essentially concerned about her deteriorating short term memory loss & capacity, she appears to be becoming disorientated in place, at risk of wandering, her risks are increasing and DP's sis is under main carer strain. Get her CPN involved and on board. It will help you.

It depends on what DP's sister wants. Does she feel she's at the end of the road now, she cannot manage anymore and her mum needs to go into residential care? It really is her call as MIL is living in her house.

If you are all in agreement, then you need to ask social workers back to reassess her needs, explain her needs have changed.

Ask them to assess her mental capacity under the Mental Capacity Act (MCA) 2005, on whether she understands her level of care needs and can make a decision about whether to move into a care home. The CPN could also assess her capacity in this area and tell the social worker (only one professional needs to assess capacity).

If she is assessed as not having capacity to make that decision, then her family, the social worker, her CPN, doctor/whoever else is involved will all make a Best Interests Decision for her, which might be that she needs to move into residential care.

You need to be sure that the social worker has full list of risks and risk incidents that have happened so far including when (date/time) and number of times she has tried to wander. What care is provided to her. How much prompting and orientating she requires to do her daily tasks.

The Best Interests Decision depends on each individuals risks, what everyone knows about the person's past and present wishes, any advance directives and what the least restrictive options are (that adequately meet her needs).

For example there are alternatives to residential care, including extra care sheltered schemes. There are also lots of respite options to give DP's sister a regular break if she is not keen herself on MIL moving permenantly into residential care. As well as residential care being an option.

The MCA does not give you powers to convey someone to the home if they refuse to get in the car, but talk to the social worker/CPN as they will be full of advice.

Getting LPA for finances and health and welfare is a great idea and good future planning. However if the solicitor agrees that she is still able to give you LPA (Lasting Power of Attorney) at this point via a solicitor, then s/he is advising you that she has testimonary capacity (the solicitor makes this call) at that point.
In which case, this might indicate to me that she possibly may retain capacity in other major areas too (but they are separate tests for each decision so this is not a given).

I hope this helps.

Sorry. to make it clear, the Best Interest decision in this case would probably be made by a group of involved /interested professionals and close family members, who all have opportunity to be involved & discuss their view, in light of all the identified risks and options.

The capacity assessment can be done by one person, but the Best Interests Decision is a consultation when it's a big decision like moving accomodation. (Unless MIL had already appointed a named individual with LPA for her welfare decisions when she still had capacity).

I often find, trying a short stay ("a holiday") at a residential care home is a good way to introduce someone to residential care, and see how they settle and if they like it. It gives someone who does have capacity, an idea of what it might mean to move into a care home. It's a big decision.

Thank you so much whereismumhiding for answering so fully. You've given me some very useful information. I'll pass it on to SIL. She really can't cope for much longer, and we can't have her any more than weekends.

DP has been to look at a couple of homes and hopefully we'll be able to get her into a good, local place, where we can go and visit her lots and take her out for day trips.

Happy to help. Good luck x

Could you not do equity release on her home and use the funds realised to pay for her care at home if that is her wish?

The truth of the matter is that the powers that be do not want to fund care home provision if at all possible. While your SIL has your MIL living with her they will not want to change the status quo if they can help it. Whenever I make enquiries on behalf of my aunt (who also has demntia) I get told that her "family" should do this, that & the other for her. Even though in her case she has no immediate family, no family at all in the city she lives in & most of her extended family live in another country.
Until something catastrophic happens no one wants to know.

There is one other way of getting your MIL into a home, and it's one not often mentioned at all, even unofficially.

If your MIL does not own or rent the house she's staying in, then if for any reason she's away from the house overnight for any length of time, the person who owns or rents the house can turn around and refuse to take her back into the house, which effectively will make her homeless and force the council/social workers into action.

My parents had to do this to my grandad to get him into a home. They were heartbroken, but as they are both disabled and my grandad needed ever more physical care, they were simply unable to help him any longer.

The sheer stress of looking after grandad caused my mum to have heart problems. He fell out of bed at home a couple of times in the night, and they had to call an ambulance to get him up, as they couldn't even do it between them.

My brother lives overseas, I worked full time then and was only able to help a little bit, and actually none of mum's siblings really bothered to help.

It was the best thing to do in the end. Grandad had the care he deserved, and Mum's heart problems subsided.