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

Hi OP
I'm so sorry I have no advice as I’m in a similar situation. Both my dad and my stepdad have Parkinson’s. Dad is more advanced and now wheelchair bound with Lewy Body Dementia. They live in Scotland and seem to get more support than here but my step mum still struggles.
My step dad is older but his is getting more advanced more quickly and he’s constantly falling. My mum is really struggling and has her own health difficulties. I think a care home would be best but I know the guilt that comes with it so it’s tricky. I really feel for you and your dad. Parkinson’s is an awful disease

Contact the Parkinsons society.
My mum has been diagnosed for about 18 months.
She's still mobile, but has the bowel issues and continence problems.
The dementia and memory problems are escalating.
In our area, there are Parkinsons nurses. They have been very helpful.

Thank you so much for replying and I'm sorry you are also going through this. It's very hard seeing my dad so desperate with no realistic way out in terms of needing help but mum not allowing help. I think a home would be best too. Mum would hate it and dad would feel guilty but also worry about fees. If my mum could manage her health better with the food and water and just try walking a little and building up then it would make life much much easier for her and my dad but she is refusing I wonder whether this is down to what I am sure is narcissism. Just feel so bad for my dad. This is a man who never used to cry but does half the times I see him now. It is very tough. Also I have heard that carers often do not outlive the person they have cared for. I fear this may be the case x

How awful for both of them. 2 weeks respite care in a home would give your dad some space and time to catch up with himself. My dad has parkinsons and is better in the home. The burden of care is shared and the spouse can visit without the burden of responsibility. If social workers are getting involved they should be able to start the process of working out whether your mum still has capacity. I hope you find a better way forward

Thanks yes the Parkinson's charity has been out they recommended a carer but mum sent them away after about five weeks. They also recommended a Parkinson's carer group for my dad but mum has told him she doesn't want him to go there. Also they recommended a new Parkinson's drug but after two days on it mum wanted to go back to her previous medication so ditched the new medication x

Thank you yes dad needs this I am very worried about him. She shouts for him to come and plump up her pillows very regularly and he is exhausted it is constant get me this get me that. When dad goes out food shopping he is only allowed out for an hour. Mum manages to get to the toilet on her own when dad goes out x

How dad your dad cope with going into the home? I hope he is okay with it all..

As is often the case it happened in a crisis situation. He was falling a lot at home and had a bad fall which ended up with a trip to a & e, then admission to a ward then discharge to a home. He just never left as it became clear to everyone that it was much better than the previous arrangement. Since then the parkinsons has progressed further and he no longer has capacity. But hes much safer and happier than before.

Intervene.
Accept all assistance available for your father.
A cleaner.
Meal delivery.
Organise your mother to get a second opinion from a neurologist/psychiastrist who specialises in Parkinsons. Go with them. Take notes. Ask about new drugs that can be stuck on with patches.
Always stick up for your Dad.
Remind Mum that without Dad she will need a nursing home tomorrow.
Bring in recommended exercise devices like stationary peddle frames. Walk with your mother from room to room. Extend her routine. Seek advice from a physio.
Give Dad a break once per week. You learn what is needed then train up local carers to be able to cover for Dad often.

Ah understood. I am glad that he is in the best place for him x

Thanks I've tried. I've gone to sit with mum so dad can get out, she won't let him out the house.
Mum refused to go to the last consultant's appointment but told dad to go on her behalf. Dad did and consultant was perplexed!
Dad does remind her that without him she would be in a home, her behaviour improves for around two days and then goes back to type.

But can she physically stop him leaving the house? If you were there why didn't he just go? It sounds like a very difficult dynamic between them.

I've known some specialists to make home visits to Parkinsons sufferers. Inquire broadly.
Your mother is not physically able to stop your father from going out, answering the door to medicos, accepting meals at door etc.
Persist with rational ways to help. Your father needs a champion on his side.

This sounds very difficult, and from your description it does sound like your mother is abusing your father to a certain extent (coercive control - she will not let him leave the house). However, I don't know how much this could be attributable to the illness? And also, I am in no way saying you are deliberately lying OP, but it's very clear you can't stand your mom (perhaps I ith good reason), so possibly your understanding of the dynamic between them could be subconsciously biased?

If she is indeed the diabolical abuser she comes across as, then I can understand why you might want her to be in a home even though "she would hate it". In all other circumstances, I feel like the fact that she would hate it is quite a negative indicator and that other solutions, such as carers visits in her home - could be tried first. (Explaining to her that if she can't accept carers in her home, the alternative is going into a home).

We kept my elderly father at home when his dementia was very severe and most people involved advised us to find him residential care - so I do realise that this can be a very tough commitment, and it's not one all families are able to make. If your dad is too broken at this point to continue, and nobody else is able to step up as her carer, and if her actions make it impossible for her to have external support, then perhaps this is just what has to happen.

Good luck, I feel for everyone involved and hope to fine a way through this very complex situation.

There was emotional neglect when I was growing up particularly from my mother so we don't have a close relationship. She has never wanted a close relationship and has often been quite mean and nasty, used to laugh at me and that sort of thing. I am now particularly worried about my dad because it does seem to be an abusive situation partly because of my mum's fear of falling when she is on her own ( she has fallen several times) but also due to toilet habits which she could improve but chooses not to work on. That is the part I am personally struggling with the most tbh. If she could help herself in that department then it would be easier to go and sit in the house and for my dad to go out. When I have tried to go and sit to let my dad out she has refused to let my dad out so yes I have stopped trying as very busy as well with young children and our own business etc

Hi there. I am very sorry you are going through this, it sounds horrendous. I appreciate this is much easier said than done, but you are going to have to get really tough and get some interventions in place on your dad's behalf before this kills him and destroys you too. I say this as a carer (with my own family and full time job) for a parent with Parkinsons and dementia who is currently teetering very close to the edge.

Brutal as it sounds, she can't physically stop your dad going out as she is barely mobile. She can be upset and angry, but his quality of life sounds awful anyway so how much worse could it be? She also can't physically kick carers out, so get them back. Even if they don't do any direct care for your mum, they can clean, support your dad, allow him to get out.

Definitely worth trying to get her to see her consultant if possible, as there could well be dementia here too impacting on things.

As i say, i know how hard it is. Every time I try and put something in place for my mum she cries and makes me feel incredibly guilty. But she is not safe and not functioning, so I am having to get tougher. Huge hugs to you- it is a pile of shit.

It sounds to me very much like your mum is wallowing in her diagnosis and her Parkinson’s has exacerbated some of her narcissistic tendencies.

My mum has had the same illness for eight years, four of which were untreated because he GP refused to refer her for testing when we first noticed the symptoms.

She still goes out for a walk every day, does her garden and cleaning and is as active as she can. Yes she has a sleep in the afternoon and she is more anxious and routine changes upset her now whereas she was always very laid back, but she is doing pretty well.

Your dad really needs to start being tough with your mum, which I appreciate is easier said than done. If he can’t do that, then a care home will need to be found for her. He will end up making himself ill if he carries on like this, then undoubtedly you’ll be called upon to look after the pair of them.

Thanks for commenting and sorry you are going through something similar it is very difficult isn't it. My dad is naturally my mum's safe place but to the point where she has taken over his life completely. I am still quite shocked he doesn't see his grandchildren unless I take them there. Occasionally he used to take our son to his hobby but he hasn't done that in several years. I think my mum is keeping him to herself and that is a deliberate thing, as seen not just with not letting him go to the Parkinson's carers group but also not letting him come here etc. I think there are moods and she is abusing him in that way just making him feel bad about himself if he does anything outside the home. I am still a bit shocked that the carer was discharged when mum knew that was what dad wanted and needed. It is as though she really doesn't want him to have any sort of life at all outside of being at her beck and call. I am angry on his behalf he is very skinny and emotional. In the summer he even found it hard to spend time in the garden because she constantly needing him to do this for her (they are not tech savvy so no mobile phone etc). I agree that dad needs to say no and stand up to her. He is trying to keep to his marriage vows after 60 years of marriage but honestly there is something seriously wrong with this situation and I am very worried x

Thanks for commenting. Your mum is trying her best and trying to keep active this is great and I wish my mum could be more like this!

I feel that my mum has taken the diagnosis, hasn't helped herself in the keeping fit / drinking water and eating the right food / taking supplements ways and now my dad is having to pick up the pieces for her which might not have been so bad if she had helped herself more. It is not fair to treat him the way she is he is exhausted. I do think the narcissism is at play here as well as the Parkinson's and also potential Parkinson's dementia that could be creeping in.

I think that unless she changes she will have to go into a home to save my dad tbh. He doesn't have much left to give as things stand ATM. He has been going to see him gp for a while and I am glad that social services are going to get involved as hopefully mum will realise how serious it all is for his health and will listen to them in a way she will not listen to any of us, that is the hope anyway xx

It’s absolutely rubbish @Spookyhallo

My dad was diagnosed with COPD many years ago and was told to keep active with swimming, walking and attending the special COPD exercise classes at the local leisure centre. He was also told to watch his weight.

Did he do any of that…no! He took to his chair with a woe is me mindset, did nothing for himself and put on lots of weight. He ended up on 24 hour oxygen and ran my poor mum ragged. At a time when we were noticing her Parkinson’s symptoms.

Just before he died, he could barely walk to the bathroom and hadn’t left the house for four years. I’m really angry now that his lack of looking after himself took mum’s last few years of pretty good health away from her. Please try not to let that happen to your dad.

Hi thanks for commenting. This is exactly what happened. Mum was advised to keep her core strong for the parkinsons even though initially it was a 'mild case'. I offered to go to pilates and yoga with her (research told me these were the best options), she refused and said 'don't change me', I offered to go and walk with her once a week, she said she didn't want to do that. When covid came I think she felt she coudl relax with less pressure to go out and do anything and she has been watching antiques programmes / quiz shows in bed ever since which wouldn't be so bad if dad felt able to go out and have a bit of a life but she is not wanting him to do that. He won't put his foot down so hopefully social services can do that on his behalf and maybe the home will be the only option. Also there has been a lot of telling Drs she is doing better than she is, eg acting, as Dad has called it when she has attended appointments. This hasn't helped with getting the right medications. It has beena struggle x

There are 2 separate problems here - you need to deal with them as such.

Firsty, the abusive relationship and coercive control. It sounds as if this pre-dates the diagnosis, and your dad is already in a pattern of accepting and appeasing. It's not part of the disease. It's not something you can make your mother stop. Your father has to resist it himself. Therapy. Domestic abuse services. He needs to engage with help. Ending the relationship entirely is likely to be the optimum solution, although that's emotionally difficult when there's illness involved. Her going into care would at least give physical separation.

Secondly the Parkinsons. You say several times that she 'won't' do things to help herself. And this may well be part of her existing personality. But you also need to remember that often that 'won't' is actually a 'can't'.

Parkinsons is a mental and neurological disease, not just a movement disorder. It comes with the apathy of depression, and with an inability to initiate actions - both physical and mental ones. Drugs can help, but they're only a partial solution. Someone else initiating actions for her and keeping her in a rhythm may sometimes work. But sometimes there is simply an insurmountable.block. My father actively wanted to stay fit. He bought exercise equipment. But he couldn't use it - his brain wouldn't start the action of using it. Even if he did manage to mentally begin, his body wouldn't cooperate.

Time perception changes. Perception of reality changes. Paranoia is common. Executive function disappears. The body and mind refuse to engage. Even if she wanted to do all the things you think she should be doing, it simply wouldn't happen.

In short, it's an awful.situation for both of them and there's a limit to what you can do. You can't make your mother do the things she should or stop doing the things she shouldn't. You can support your father to step back and look after himself, but you can't make him.

Picking up a couple of.points from your last post.

There are no 'mild' cases of Parkinson's. Only early ones. It's a progressive disease. There are a few things that may help slow progression, but it's not really controllable.

'Acting' in appointments and with strangers is universal. And a lot of it is unconscious. Same with dementia. Same with masking in conditions like autism.

The persion may be in denial/putting on a brave face/performing, particularly in the early stages of Parkinsons or dementia, but there's also a mechanism deep in the subconscious brain that does reduce symptoms in the presence of strangers and strangers environments like medical appointments. That's not done on purpose. It's a deep-wired survival mechanism.

And it isn't possible for her to accurately self-report symptoms. The condition causing them prevents her seeing some of them.

Thank you yes this is all understood. Mum herself was happy she had what she referred to as the 'mild' version of Parkinson's but it hasn't been like that for a long time of course. Do you think the Parkinson's is causing her not to be able to drink much?

Dad has made attempts to step back but they've been together since they were teenagers and are enmeshed and he has been unable to override her in this regard to help himself.