When the caring spouse isn't up to it?

[Watchagotcha]

I've posted before about my PIL and things have moved on, but not in a good way. MIL has osteoporosis, Parkinsons and LB dementia - the latter of which is worsening slowly but steadily. She is probably over the edge of not being able to do personal care - muddles her medicine / decides not to take it / hides it away "for later". She struggles to get clean in the shower, struggles at the toilet and can't keep her hands / nails clean. She mixes up her clothes - trying to put a top on as a skirt etc. And she's wobbly and recently fell, bruising herself.

But the problem increasingly isn't her - it's my FIL who is her carer. He is basically unsuited to the role of carer, but determined not to let anyone (other than my SIL) do it. They've had visits from the social care team to do a care assessment for MIL - he told them they didn't need it and sent them away. Ditto the mobility awareness team, who wanted to do an assessment for MIL getting out of bed / her chair which she really struggles with - he sent them away. They recently had a mtg with her dementia consultant, where he got very angry when the consultant suggested that they should start looking at personal care now rather than when it becomes a crisis - he started shouting at the consultant, demanding a cure for dementia, and generally refusing to engage in anything that he suggested. Ditto for a meeting with a Parkinsons nurse - he wanted to know how bad it was going to get, and why wasn't there a cure for this, etc. The consultant and nurse both emphasised how important it was for my MIL to have social interaction and for him to access carer support - again he has refused to take this forward, despite DH having made the contacts and told him about it. The only thing he has agreed to have done are to have some bars fitted in the shower and some walking aids supplied.

I can see why he is being so obstructive. He doesn't want this life, he didn't sign up for this life in retirement after a long working life, and he's really angry about it. He has basically been looked after (domestically) by women his entire life, and he is finding it very hard to become the one organising meals, laundry, shopping, bills and admin etc and at the same time coping with a wife who is confused, slow, difficult to deal with physically and mentally. Yet he won't engage with any of the services on offer to help make his - and her - life easier. Instead, he is passing the buck to my SIL (another woman) who now goes in at least 3 times a week to clean, wash and iron for them.

POA is in place but atm he technically has capacity so he is attorney for MIL unless he decides to hand it over to SIL and DH.

I guess my question is, what do we do when the carer / attorney is not up to the job - but won't let outside agencies / cleaners / online shopping accounts / etc be brought in to help? I think it's going to end up in a big fight between him and DH which is hard as we don't live nearby and don't have that much time with them. SIL lives close to them, but unfortunately is not assertive in the least: ideally she would just tell her dad that she's not doing the cleaning / cooking / etc any more and that MIL is frankly getting smelly and needs carers coming in to help her shower etc, and that she's going to put things in place to sort this out. But she will never do this. The best she can manage is to suggest things like a cleaner or online shopping - then back down when her Dad says he's not keen on that idea.

Help!

With his.poa you can ring the.office of the public.guardian for advice. If she is at risk of neglect because he wont get help for her then call the adult safe guarding team at social services.

I should have said we're in Scotland, so it's a different agency that oversees the POA.

It's not so much that she's being neglected - she isn't. She's fed, watered, dressed, kept company, taken to appointments etc. She's helped when she needs it, as best he can. But he either can't or won't get his head around what the dementia diagnosis means in practice - he still thinks he can tell her to take her tables, and she'll go and do it (she hides them, or loses them, or puts them somewhere else and forgets). OR when she comes out dressed, and has wrapped a top round her waist as a skirt, he thinks she's just made a mistake and is puzzled as to why she doesn't seem to recognise this. I think he's turning down the offers os assessment and care because he thinks (hopes) that things are going to get better and go back to normal.

It does sound difficult but he is turning away assessments that could help her. She has had a fall, she needs a full mobility assessment and any equipment that might make life safer for her like raised chair, bed, alarms, falls mats etc. It is her right to have an assessment. If she is not able to keep herself clean and choose clean clothes then she is also at risk of getting infections like uti or a skin infection, this can all be prevented if she is allowed to have professional carers in to look after her. With her advanced illness she may have difficulties in swallowing certain foods which is something that the pd nurse can advise on, that is very important, her medication may be important too and if she isn't taking them or is taking them incorrectly that could affect her ability to move around, that's not fair. It must be very difficult for him but her safety is the priority, do you have an agency like Age UK where you are who could help you find out what can be done. It could reach a crisis point where she takes a nasty fall, becomes very unwell and is taken to hospital. What a sad situation for everyone, dementia is such a terrible disease.

www.publicguardian-scotland.gov.uk/power-of-attorney/power-of-attorney/our-role

I'd have a word with the social work team.

My DM and DF both supported each other and both qualified for attendance allowance. My DM - although pretty confused- still helped my DF put on his shoes,socks and braces even though she was away with the fairies.

Their social worker saw them as a team and tried to keep them together as long as possible.

While doing his best to feed my mum, DF almost always ate her lunch when she said she didn't feel like it, and gave it back to him. This was observed by the Alzheimer Scotland visitors and relayed back. ( My DM was about six stone.) The SW team arranged for my DF to go out once a week and do the shopping while my mum was visited by someone else who made her scrambled egg and toast etc.
As time went by the care required escalated and the SW team organised it and we also put extra money towards two weekly cleaning visits.
I'd also get in touch with your local Alzheimer's Scotland brach to see what they suggest. They were wonderful. OPGS less so.

Really difficult time for you. It is really hard to help them be helped.

www.mwcscot.org.uk/about-us/who-we-are-and-what-we-do

We had this and we kept pounding the drum as Dad was not coping and becoming ill himself. We were rotating care between the 6 kids with the brunt falling on the "Girls" (ie all women over 45) It took two of the girls pretty much having breakdowns for things to change and some tough talking to Dad by one of my sisters working closely with social services - in the end the threat of sectioning Mum to gt her care sorted is what made Dad accept he had to have carers in. The last two weeks with Mum we had massess of carers etc too many really but she was 100% reliant on others and actually the last week didn't eat or drink at all.

We had stand up rows, I walked out twice, it was utterly selfish in my view and Mum DID suffer

Absolutely get things in now - be there when the carers or cleaners are there - we started the ball rolling by getting housekeeping help and being there whilst it happened to stop any abuse or nastiness towards the cleaners, then they became accustomed to that and we moved onto Dad having an extra carer in whilst he went out for his health so the gym and cardio and hospital appts and blood tests etc. It takes a team of 6 or 8 people to provide 24/7 care and have back up - you need social services, District Nursesm, GPs and any other services on side with this - oftn the district nurses are the co-ordinators of all of this so its best to get onto GP to put this forward and get things moving - in the short term be with them when they are around - it is fear that is driving the behaviour and the teams are well used to this

I just wanted top mention (as you probably know) care is free in Scotland, unlike in England where it is means tested. In case there is that also (some people worry about having to pay for it) Maybe that could be a selling pit for the FIL..also that it might make his life easier?

It sounds like he might be in denial about the diagnoses. I see this with my own in laws. It's not helpful to her is it.

It's not so much that she's being neglected If she's not getting her medicines, she is being neglected. Remember this, it helps to stiffen your resolve in discussions.

@RB68

I think this is what it is going to take. Unfortunately my SIL is not as robust as you, and it's going to be up to DH to get through to him - but we only visit twice a year, and are often so busy that it's hard to find the time to sort these things out. We are going to have to engineer time when it's just us and them, with the children and SIL elsewhere, so that we can have these difficult discussions / stand-up fights.

The medication thing is difficult. SIL thinks that MIL is not taking them all - when she cleans she often finds tablets in odd places - but she's not able to be there all the time as she works full-time. MIL - even if asked an hour after - has no reliable recollection of whether she has taken them or not (sometimes she says that John from upstairs has come to help her with that - there is no John). And FIL can't seem to grasp that she needs to have the tablets handed to her, and he needs to watch her swallow them every single time: it's not enough to just remind her to take them and assume that she has. He just doesn't seem to grasp this - and TBF when she's more lucid MIL totally resents being told to take her tablets, as she believes that she's totally capable of taking them and gets pretty grumpy with him so he backs off. It's a mess.

when she's more lucid MIL totally resents being told to take her tablets, as she believes that she's totally capable of taking them and gets pretty grumpy with him so he backs off Had this with my father. There are three reasons why he's so much healthier now he's in a home 1) he's being given his tablets and watched taking them 2) he's being fed well 3) he's being turned in bed in the night. 1) and 2) sound such easy things to do, but it proved quite impossible with him at home, given that he does have capacity and his stubbornness is unmatched.

Would it be useful if your DH contacted their social work team to say he’s not local and heavily committed elsewhere but v concerned for his sister . Could he press upon SW to try to factor out your DSil in the arrangements that need to be put in place.

Scotland here too and was in your exact situation. My heart goes out to you. My dad had Parkinson’s and lb dementia for 13 years. Mum was his Carer and as things got worse refused all help and support from social work. Carers would turn up and be refused entry.
She cared for him until 6 weeks before he died when she herself had a stroke. He was admitted to respite care where he died. She to this day can’t see if she had just accepted help things wouldn’t potentially have got so bad. Breaks my heart

And it doesn’t matter how many times I contacted social work she turned it away every single time they tried to help. I run myself into the ground helping and the ironic thing is not we are back in the same situation with her refusing care for herself as “she has her daughter”. It will be me having the stroke next at this rate

Tbh I would say she is being neglected as your FIL is unable to meet her needs through no fault of his own. My FIL nearly killed himself caring for my MIL 24 hours a day. He still insists MIL understands everything he says. I would put money on this not being true but at least it no longer affects her wellbeing.

Ultimately it was a hospital admission that made things change in their case. It may take something similar for your pils.

I would write to her GP about the medication and the care assessment. Then at least you have put concerns on the record.