Can anyone recommend anything to help my dad caring for mum with Parkinson's?

[Spookyhallo]

My mum has had Parkinson's for around 15 years, it started off as quite a mild case but of course is getting much worse now.

Mum hasn't really left the house or been walking or exercising to help herself really since the diagnosis but during COVID barely left the house and hasn't since. She hasn't kept up her walking or had sunlight on her skin

Mum spends her time in bed watching TV this has been the case for many years.

Mum has piles and constipation and spends hours a day on the loo, it is very painful for her. Mum is weak and can't walk far at all so likes my dad to walk her down the landing to the toilet and pop her on the toilet where she can be for hours every day.

Dad is at breaking point because he can't go anywhere or do anything because mum needs things doing for her constantly. He is at his wits end and very emotional. Yesterday I saw him briefly and he was crying and looked desperate.

He pours our water for her to drink every day and gives her vegetables for her digestion but she refuses to drink the water (has about 1/4 of it) and doesn't help herself.

They did have a carer twice a week for a few hours because dad said he needed some help but after five weeks mum asked them to go and not come back.

Mum doesn't want dad to leave the house so he can't come to see his grandchildren. Mum doesn't want the phone landline on so that has been pulled out of the wall.

I realised some time ago that my mum has narcissistic tendencies, she never wanted a relationship with me, I lived in London for ten years and she didn't come to see me, we've never been out for coffee or lunch together, when we do chat it is always about her. My children's successes are down to her etc. I have offered to go and sit with mum to help dad but she doesn't want this.

Lately my dad has been braking down at the drs. They are involving social services to help my dad but I'm not sure what that will do apart from advise she needs to go into a home. She will hate this but it would be the best solution in some ways for my dad although he will feel very guilty.

Has anyone else been through something like this and do they have any advice? Tia x

Social services I think are going to be able to get in there and hopefully assess. He has been to the GP and has cried at least several times and reported the situation / coercive control so I hope social services can go in with this in mind.

The problem is your parents’ relationship. Your mum is controlling to an abusive level, and unless your dad cracks nothing is going to change.

Is there any way you can support him to assert himself better? Either she is completely dependent on him in which case he’s in a position of great strength, or she isn’t dependent on him in which case he can leave her to look after herself without worrying.

How does she “punish” him for leaving her?

He said yesterday he feels like he can't argue generally and she regularly has his claws out for him (he said yesterday that she has done throughout the marriage) and shouts is unpleasant and everything has to happen right now eg she is unreasonable and unappreciative. He does what he is told for an easy life except it isn't any easy life for him sadly. It is difficult because I have my own issues with how she has been as a mum. He has always largely taken her side in her behaviour towards me and yet now I am having to try and protect him and help him from her. I feel very sorry for him and for all of us tbh.

Do you think the Parkinson's is causing her not to be able to drink much?

Yes. It will affect her perception of thirst. Her ability to decide to take a drink. And possibly her ability to actually pick up the glass. Not only from tremors, but because the brain sometimes can't make the body act.

One of the main features of Parkisons is a large, and very unpredictable, 'stop' switch. There was a famous actor (might have been Terry Thomas - one of that generation anyway) who lost the ability to walk through doorways. He could still walk fairly normally at that point, but not through doorways. His body just wouldn't do it. He had to imagine a bar of chocolate on the other side, and then he could move again.

It's a peculiar thing. That doesn't make it any less difficult to care for someone with it, but it can sometimes be slightly less frustrating if you realise that refusal may actually be inabilty. Getting angry doesn't help if the behaviour isn't a choice.

Has she definitely still got capacity OP? Not been any mention of developing the associated dementia? What would happen if your Dad was admitted to hospital?

This is interesting. As mentioned above mum didn't go to the most recent consultant's appointment. There has been so much avoidant behaviour generally it is very hard to know what is avoidant and what is capacity. It is a good thing social services are going in to assess I just hope mum can be honest. My concern is she will play everything down and my dad will be no further forward.

Thats a good question as mum wouldn't want me caring for her not that I could anyway as much as she would need. I think she would at that point need to go into a nursing care home x

Your Dad deserves a retirement that he can enjoy, not the 24/7 relentless drudge of caring for someone. I used to work in elderly care and quite often, the carer would end up so run ragged that they'd die before the person they were caring for. Don't underestimate the physical and mental impact of this.

Your Mum needs to be cared for professionally, whether she wants it or not. So that means either live in care or a nursing home. But your duty here is to protect your Dad.

I haven’t read the full thread, but I’d suggest contacting social services for a Care Act assessment as well as an OT assessment to see what your mum can do or ways tasks can be adapted.

Secondly, each local authority area will have a carers service. They can provide all sorts of different support but it does vary place to place so wouldn’t want to give specifics. I think putting your dad in touch with them would be helpful.

I think this can happen a lot when people become completely dependent on other people especially people who are prone to even mild narcissistic tendencies, they stop seeing the other people in their own right and start seeing them as instruments to have their needs met.

A family member who was always very nice and kind but always had some pronounced dependent/selfish traits became endlessly selfish as her Parkinsons progressed and no longer demonstrated much care for her carer’s needs after a certain point.

A point came where a care home was the only option because the care needs were too high.

The intention was that she would get better and come home (for both the carer and the patient) but of course realistically that was never going to happen.

She died in a relatively short time in the care home which was a mercy in the end as she had very little quality of life by then.

It must be so hard knowing you are becoming really ill and there is no cure it must be very hard. My mum had a very very difficult childhood and I wonder whether she feels in some way this is her chance to be looked after? Just from some of the requests for help dad has shared with me. I have no idea what she has capacity to do and what she doesn't and maybe she doesn't even know that now but in her head only my dad can do everything and that is the problem as he is going downhill and I have seen him cry so many times in the past couple of years yet he can't seem to put his foot down.

Could you help arrange some counselling for your Dad? It might help him see his relationship with your Mum for what it really is and also give him some strategies to assert himself more?

This is a good idea, I will speak to my Dad about this. I think the GP may also be organising this for him but I will check.

That is the key point, when your Dad has reached his limit. We had it with the family carer. Even after all that she had done she still got pressure from some to do more so nothing is ever enough.

You won’t be able to decide that for your father but perhaps you could have conversations.

I suggest using questions not comments though because when this was raised with the carer in our family there was huge initial kick back as she could not deal with the guilt of starting to make a change and saying no.

Explorations worked much better. Therapy would be great if he’d go for it.

As others have posted, the focus needs to be on your dad. He needs help and is at breaking point.

The best thing you could do is help your dad set up cleaners etc so everything isn’t down to him. So initially I’d have careers in the house but not have them doing anything with your mum. They will be there to support your dad with cleaning, washing, meal planning, shopping lists etc. I know this doesn’t solve the issues with your mum but it gives some instant relief for your dad.
This is is exactly what we’ve had to do with my InLaws. Both are ill, FIL wth Parkinsons and MIL is recovering from cancer and has heart failure. She’s absolutely refused any help for the last two years, despite us seeing she needed it and relying more and more on FIL and us!
She was recently in hospital for 2 weeks and we took things into our own hands and set them up with careers ti come in for 4 hours a week. FIL was very much onboard. They help with cleaning, shopping lists, medication reordering, going to appointments if we aren’t around etc etc. For the first month MIL was clearly livid but she’s now telling everyone how wonderful they are. Life for everyone is so much happier!
Will add both PIL are receiving the higher Attendence Allowance, so get over £200 a WEEK!! This is despite them having a lot of money in savings. It is given to anyone with high needs. This money is now being spent on the careers rather than just putting it into a savings account!!

That is such an encouraging story @LizzieSiddal. I've also had that experience of seeing someone go from adamant about not having strangers in the house to deciding that actually they aren't so bad after all. I think that if the carers are nice people they can become part of the team around the person and are often very much appreciated.

It may be wishful thinking, but is there any way that you could encourage your DF to take a respite break for himself? If your DM is not "allowing" him time for himself and he's at breaking point, would he agree to just go elsewhere (your house perhaps?) in order to regain his own mental health for a week or two. Would his GP or SS be able to say that this has to happen before he breaks down? Your DM will then either need to accept full-time carers or herself go into respite care for that period (which may then either break her intransigence or allow carers to see and report on the full extent of her illness). But I realise that your DF may not be ready to do something so drastic. It's really a shit situation for all of you.

Your dad needs to step away. Contact social services, cite carer breakdown and given them seven days notice he will be moving into yours (temporarily) for an indefinite period and your DM will be home alone 24/7 with no family input at all. Force a crisis.
Sounds horrendous, but her wants don’t trump everyone else’s.
We had a similar situation with PIL. FIL then died first, we refused to plug the gaps so MIL went into care and we all got our lives back. Too late for FIL who lived a tortured last few years. And yes, they had over £1 million in assets and just banked the AA every month! So wrong.

Has he ever said no or asserted himself with her? It’s going to be extremely hard to change the dynamics of the relationship at this stage but, barring a crisis of some sort, that’s what has to happen.

What does your mum do to keep your dad in line? Shout, say nasty things NHS, call him names, throw things, make him feel guilty, give him silent treatment? Unless he begins to stand up for himself, then nothing is going to change. Does he recognise this? Or does he want you / GP / social services to intervene on his behalf so he doesn’t have to?

I’m sorry OP, it must be hard to support someone who didn’t support or protect you like a parent should,

Thanks for the comments. Dad does need to step away and get respite as he is completely exhausted and drained from the whole experience. I know he feels so trapped. The reason I think mum has narcissism is because she has never had any empathy or care about others. She also comes from a family of narcissists (her brother and parents etc). We were fed meals but there was no heart there underneath to really care about how we were. I imagine she is being the same with my dad. Feeling superior around him and as though she is too good and special to be this ill so raging at him and taking things out on him. I think he is very sad that this is how their marriage is ending. Because he knows that mum won't listen to anyone else, he has been insightful presenting to his GP and showing how much this has been affecting him, I know he has been doing this for some time. I have everything crossed for social services stepping in and helping somehow.