Respite care legal issues

[Makingitupasigoalong13]

Hi all - I'd appreciate any help you can give on how to handle this.

My elderly MIL suffers from fairly advanced Parkinsons (potentially also now showing signs of dementia). Until now my FIL has been her only carer - until recently they have both been absolutely opposed to having any in-home care arrangements, despite her condition deteriorating rapidly. My DH and rest of family have been asking for years that they accept more help as we all fear that he will run himself into the ground, and that he is no longer physically fit to look after her, which is dangerous for both of them.

My FIL has now realised that he is no longer able to manage on his own, and has very reluctantly arranged for some carers to come in occasionally. He has also asked that we arrange respite care as he needs a break. While this is a massive step for him (which we all completely support), he is feeling extremely guilty about everything. This isn't helped by my MIL continuing to refuse help, crying, and claiming that she is being bullied/ ganged up on by carers being 'imposed' on her. I think at least part of her reaction is a result of the anxiety that comes with her illness, but obviously we are all very concerned for them both and don't want to do anything to make the situation worse. From our perspective, wanting to have additional care is more about making sure they can both stay in their own home for as long as possible as the only alternative is for her to go into a nursing home, which none of us think is right at this stage.

Anyway, my question is this: given she is so resistant to the idea of any external help, and has already complained of being bullied into accepting help she doesn't want (I must stress that my FIL is the kindest man in the world and i have absolutely no concerns around any sort of mistreatment, there have been no arguments/ raised voices or anything, simply calm discussions about how we can make sure they both have the support they need), what do we do if - when we take her to the home for respite care - she refuses to stay? She's not physically capable of leaving, but we worry about the legality of whether my FIL could be forced to take her home, or worse be accused of some sort of neglect by leaving her there against her will?

Does anyone have any experience of this, or any advice? I feel so guilty and like we have a huge responsibility to make sure she is properly looked after in her illness (the way i would want anyone to look after my own daughter if she was ever in a similar situation and i was no longer there to look after her), but he also needs help and surely we need to look after him too.

Hello, what a difficult situation. Brief background: my grandfather had PD, I was responsible for arranging his care as my mum and grandma predeceased him. Then my Dad got Alzheimers and again I was responsible for arranging care.
My first piece of advice would be to park the guilt. Easier said than done, but i find an excess of empathy in this situation can just end up debilitating you at a time when you need all your strength and mental resources. You have nothing to feel guilty about!
As people age (not always but in my experience, not infrequently either), and especially if dementia is in the picture, the areas of the brain involved with processing new information, and with empathy, get smaller. Everything can become about self protection and clinging on to routines . Seeing the other person's viewpoint gets harder. Put simply, your mil will have to accept professional help because FIL is on his last legs. Do not be afraid of putting it quite starkly: he is exhausted, and if he has a stroke/ heart attack etc the only option for her would be to go into a home permanently. Therefore he needs help. Add in whatever sweetener you know will work after you've delivered the message.
re the respite home, if she is known to have capacity (and the bar for this is set fairly low in my opinion) then you cannot force her to stay. My dad was taken to a home, raised utter hell and we had to take him backto his own home 3 hours later. He didn't even have capacity, but the home told us they couldn't cope with him. So best to get her cooperation if you can at all. Good luck.

Does she the capacity to make her own decisions? Has this been assessed? If it's the legalities that you're asking about this is important. I'm in Scotland so only really know the law here but if she is assessed as not having the capacity to make her own decisions then she cannot refuse the respite or carers and your FIL can't be asked to take her away. Does anyone have Power of Attorney?

Horrible situation though and in my case really dragged on. Eventually relative ended up in a nursing home which was best for everyone but horribly long journey there. Best of luck. x

I'm a bit rusty as on mat leave but I think that there are people called DOLA (deprivation of liberty safeguarding or something like that) who should assess if someone wants to leave a respite placement. I'm not sure though if that's only if she's already been assessed as not having capacity, or if the capacity assessment would be part of the DOLS assessment. How will the respite be funded? If it's government funded is there a social worker you can call? Maybe call your local council and ask to speak to someone for advice? Obviously on Monday! Hope that was vaguely helpful...

Tum the DOLS assessment would include a capacity assessment. I work in a hospital and the Safeguarding Adults lead does capacity assessmentS and imposes a DOLS if he feels 1) the person does not have capacity and 2) it's in their best interests to remain in hospital. OP not sure what the equivalent is in the community, but you could ring your local hospital and ask to speak to the safeguarding lead/ safeguarding CNS for advice.

Thanks all - really appreciate your advice. Not sure re POA - i think its in place but am guessing from what you've said there are extra steps that need to be taken (DOLS/ capacity assessment etc) to actually use it. Completely agree the best thing would be to get her on side- I'm just worried that given previous experiences, she'll say she agrees, then forget the discussion, and then refuse at the last minute anyway. Lots here to go at though so thanks for your responses.

Is this so unique?

My mother forgets where she is, and sometimes describes her sheltered accomodation as "a prison", at other times she raves about it.

I used the fact that she knows she forgets to be quite assertive. "You agreed to move". I also gave her a get out - that the move was temporary until she felt better. Luckily she did not like to admit she had forgotten something, and also accepted the logic of my explanation. After a few months she also acknowledged that having the right support was easier than fighting to retain independence.

I think you need a few white lies. She is staying somewhere temporarily because your FIL is ill. (Which is true - he is exhausted.)

I woud speak to the homes you have in mind. They will be used to the problem. They will probably have some strategies, like inviting her for lunch and making her feel welcome.

I took having a POA as permission to make the right decisions for my mother. She could not live on her own, and any other form of support would have required too much sacrifice from other members of the family. She may have had views, but these views lacked context and so were unworkable. No one challenged me, because I was clearly acting in my mother's best interests.

Is there a Parkinson's Nurse involved ? If so I would talk to them for support & advice re care homes. Parkinson's UK have a helpline, they may be able to help with legalities 0808 800 0303. I have MIL & mum with PD ... I know how difficult getting them to accept support is ...

Turn you do not need a DOLS to start using a POA. It's ready to use as soon as it's been registered by the Office of the Public Guardian, no matter what the capacity of the donor is.

Sorry my last post was addressed to the OP, not to Turn!