Resisting Carers

[AnishH]

Anyone else had experience with one parent resisting care for the other parent? Trying to manage everything themselves and failing?

My mum diagnosed with PSP in July this year has fallen down over 60 times in the last 2 years. The most recent one led to A&E and an overnight stay.

My father adamantly refuses to pay for extra care (we get nothing from adult social services). It’s breaking him but I don’t know how to get him to accept help.

Currently they pay for 1 hour a day.

We have daily arguments as I think it needs to be 4 x a day or even a live in carer which I know will drain their finances over time. But isn’t that what savings are for?

I’ve now temporarily left my wife and kids to move in with them to help. But it’s not enough. I’ve even lost my job.

I suppose this post is asking if anyone else has experienced anything similar and how they got around it. How long it took to convince your parent? What tactics did you use?

My worry is the wake up call will happen when she has a major fall and breaks something. And by then it will be a case of we should have got carers in sooner.

Grateful for any support or advice at all. This is a terrible disease and I fear it still has a way to run its course for my mum.

[Postie7]

Good morning, Your predicament is very common from my knowledge. One of the difficulties of this disease is that it is totally unpredictable-the falls come without any warning whatsoever. I am the carer for a relative who has always lived independently and still wishes to do so. In hindsight he first showed symptoms in 2018 at the age of 66 but was only definitively diagnosed with PSP in 2023. He often had falls, mostly backwards but this summer fell and we called an ambulance. He was admitted to hospital but hadn’t sustained any serious injury. However the hospital soon realised that the falls come out of nowhere and a deprivation of Liberty order was placed on him after he fell backwards twice in 4 hours. This meant that he had to be accompanied everywhere including toileting . The hospital decided that a padded helmet should be worn at all times except for sleeping. This was totally unacceptable to him and upon leaving hospital has never worn it. There really is nothing short of putting someone in a padded suit that can protect against these falls.

Deprivation of Liberty is not what someone with PSP needs. There is no confusion in my relative’s mind as he knows how he wants to live and that is without outside intervention. I had thought when he was admitted to hospital that this was the game changer and he would accept help but he has railed against it and so we as a family have accepted his decision as he is of sound mind and it is only with 24 hour one to one care that you can prevent falls.

It is a most cruel disease and we have taken the decision not to object to his wishes as we are not walking in his shoes.

Take good care.

[Kelmisty]

it’s very difficult as your Dad probably doesn’t want to admit he can’t cope with it all and eventually he will crack. It took me three years before admitting Mum needed way more than I could give. My Mum is now in a nursing home, and even though I feel guilty the falls have all stopped but she is getting worse in many other ways.

Can you contact your local council to access to carers support for him, they can provide two weeks respite for him once a year at no cost I think. Have they applied for attendance allowance, they should be entitled to the higher amount of just over £100.week - this isn’t means tested. They could use this towards the cost of more care.

Also your local hospice might be able to offer some counselling support/medical and practical support. Ours were amazing when I was looking after my mum. They now offer advice to the nursing home if needed.

The other thing that might come up in the future is social care might contact in regards to safeguarding issues if she has regular falls where the ambulance comes out.

Have you told your Dad how this is effecting your life? And explain even if you got a little help in it would make things easier for you as well as him, also your Mum could get her personal care done by someone else, he could even just use the time to do other things that need to be done?

I think unfortunately it will only be when your dad gets to utter exhaustion as someone who has been there it eventually happens and only then are you open to getting more help. Having carers doesn’t mean you don’t care, it takes a team of people to look after someone with psp.

You might need to stop providing the gap filling to help, you need a job and to be at home with your family - surely your Dad and Mum would understand that? Also you don’t know how many years this will continue for.

There’s no easy answer unfortunately. I do hope your Dad comes around as this is more than about him and money.

[Bergenser]

Dear AnishH

This is clearly a difficult situation and no easy answers. I'm reminded of my father-in-law, who cared for his wife who had Parkinson's Disease (at the time they thought it was Richardson Steele i.e. PSP, but that's s different story). He firmly resisted help from their four children or from outside carers, and even when he got diagnosed with cancer (twice) he insisted he was the only one who could care for her. The family had to stealthily remove her from the house and get her into respite care when he became too ill - this was a traumatic time for everyone, especially his wife. She outlived him by 15 years and had a succession of great live-in carers, allowing her to stay at home till the day she quietly slipped away.

This was obviously on my mind when my husband got diagnosed with PSP. He didn't want or need much help for the first year or so, but he then had a bad fall and broke his heel, and was sent home from hospital with a promise of OT visits and hospital physio - and with me taking on the care 24/7.

I think of it as the "love test". I knew it was totally unsustainable for me to become his full time carer (even with a supportive workplace and the opportunity to work from home) - but at that stage of his illness he was so scared of being abandoned or put in a care home, I simply "had to" get him through the period of recovery after his injury. Once he was starting to walk again - four months later - I was able to broach the topic of outside help, and he reluctantly agreed for a care company to come one day a week while I went to the office. I had to stress that this was "for my work" and not that I'd stopped caring for him. Luckily his first regular carer was a good fit, they got on like a house on fire and she now feels like part of our family.

Your parents considerations might be similar to what I felt when my husband's needs changed so suddenly. Caring for a spouse is an "act of service" that proves your love during a difficult and scary time. It can very much feel like it couldn't or shouldn't be replaced by a professional service.

When you suggest more external care, your dad might feel like you don't believe he is willing and able to do absolutely everything for your mum. Your mum might also subtly resent the involvement of strangers, intrusion on their privacy and the potential loss of intimacy.

Perhaps you can talk to your parents, acknowledging that your dad has proved - and surely will continue - to love his wife endlessly. However he must show that love through looking after his own physical and mental health. He might also see that he can make their days more enjoyable with outings, activities and exercises, if there are extra hands to keep your mum safe. If you could find a Personal Assistant who is a good fit for the family, this could feel less like typical carer visit (I still find that could be a bit "clinical") and more like a good friend & companion enriching their days.

Finally - you are also showing/proving your commitment as their son - and I am sure they feel grateful for that - but they are probably also worried it could turn to resentment if you continue to give up too much to help them.

It's not an easy conversation to have. Perhaps the PSPA have someone who could offer a bit of family counselling to get through these conversations? There is a lot at stake and as you say - it can last a long time and keeps getting harder.

I wish you and your family all the best. 🫂🌻