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.
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AnishH
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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.
Thanks Postie7 that’s a very sad account and I can relate. And thank you for taking the time to reply.,
I think I’m unable to get past the bit where I walk in my father’s shoes. I try but I always come back to everything should be about her safety and quality of life. If I accept his way it’s like watching a car crash in slow motion.
Hence the arguments. Often in front of my mum which can’t be nice for her.
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.
Hi Kelmisty thanks for replying. Off the back of your post I’ll call the council next week as I wasn’t aware there is non means tested respite care. This is useful information!
Attendance allowance - yes she gets the higher rate.
I’m coming around to your point about letting go and moving back with my family. I’m going to try for 2 more months here. And try to set things up so it’s safer. This means moving her downstairs and getting someone in to help dad on a daily basis.
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.
Hi Bergenser such great advice here. I hadn’t considered the family counselling bit but I shall.. I may also read your reply out loud to him as it’s empathising with his situation. You have made me really stop and think about where he is coming from.
*Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance and surveillance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.
Remember that the main caregiver jobs and occupations grow along with age and the disease progression. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.
Rest and sleep well is essential. Combat stress, too.
On the first years of the disease, the patient resists losing their autonomy trying movements and exercises that are increasingly difficult and logically increase the risk of falls and damage. The patient often discharges his/her frustration and complaints about the primary caregiver. It is a very hard and discouraging situation but it must be overcome. It is one more symptom. Also it is exhausting being on call 24 hours a day 7 days a week.
From our experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential, supposed an effective and intense help with trained personnel throughout all the year.
JEN2017 said: “Nobody could/should go through this hard disease alone. Especially the caregiver”.
Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”. And I would add that the main caregiver is the most appropriate to frequently express affection and accompaniment to the patient without excluding other friends or relatives.
There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when attacks the feeling of guilt, unfairly. Be careful.
No one will understand you unless they have been through such an experience. There is always the feeling that you could do better and always keep your nerves under control. We are not perfect and whoever does everything she/he can is not obliged to do more. It is relatively frequent that a situation, a small accident, a major difficulty, a rebellion of the patient puts the caregiver on the verge of losing his nerve. Leaving the place for 10 seconds and thinking that the enemy is the PSP and not the patient, can avoid difficult situations to regret.
It is worthwhile for the caregiver to report on the typical progression of the disease and then take each day as it comes. All patients are different and even with a lot of accumulated experience about the disease the caregiver must be prepared for what he did not expect.
Faced with the dilemma of caring for the patient at home or in a nursing home, I share these words from “Dance 1955”:
In our case, we decided to care for the patient at home. This implied a significant economic cost and a demanding personal dedication on the part of the caregivers, especially the leader caregiver. As well. On our case and circunstances I believe we did what was best for the patient, caregivers, and family members.
On april 2022 Bazooka111 contributed these meaty reflections with which I am completely in tune:
“I think I’m losing my mind as a caretaker. In fact, I feel like I have lost myself on this journey. Respite is my salvation.
Mental Health is important for the caregiver, but also for those we care for —- talk to them as if the disease isn’t present, make them feel included, share your day without requiring a response, offer insight on what is happening in the world …. Love them as you always have, and don’t allow this disease to rob them of some of the simple things that we as their caregiver can bring.
Being a caregiver is something that no one will ever really understand, unless they have been there.”
Carers anxiety /panic morning episodes.
This thought is not uncommon among caregivers:
“This disease is so unpredictable I feel dread day to day of what it will bring”.
I submit for your consideration the following reflectio
The first thing that makes you think is that external and professional "psychological support" is NECESSARY for caregivers.
Neurological diseases, and PSP in particular, bring with them a "roller coaster" of symptoms that impact the caregiver.
I reproduce below the teachings of a prestigious Spanish psychologist:
The work of a caregiver produces a STRESS that is good to face the challenges that the diverse and changing symptoms produce.
If the caregiver does not have effective help and that STRESS is not adequately relaxed, it is likely that this will lead to ANXIETY trying to personally reach out and solve all the problems. If ANXIETY is maintained, the nervous system is blocked and if this situation is maintained over time it can lead us to DEPRESSION, a mood disorder that can lead to very negative situations such as not feeling useful due to being overwhelmed, generating harmful thoughts such as hating oneself being able to reach very serious situations.
Statistically, DEPRESSION affects women more than men.
Without health you cannot love or care for anyone in good condition.
In short, the caregiver must take their own physical and mental health and well-being very seriously.
Finally, reproducing the phrase of “Anne Heady”: "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
It’s a terrible situation. My mum has PSP and my elderly father was her main carer as I worked overseas. I agreed to come back to UK to ‘support’ dad, but what has happened is that I’ve become to full time live in carer with no chance to go out to work myself.
My mum gets 3 care calls per day through social services- the first is longer as they help her shower and dress, but she still needs constant supervision lest she try and get up to do something- at 82 with several bad breaks to wrists and ankles she’s not independently mobile anymore. I do get 3 hours per week respite from a charity called Crossroads and once I’ve found a suitable care home I hope to get a respite break, we had 2 weeks in February but the care home used offered no activities and I wouldn’t want to put her there again (the staff were kind and gentle but it was too boring). Mum now has a dementia diagnosis as well so have to find somewhere that will be able to meet her needs.
There is support/help out there it just takes some time to find/access and none of it will cover 24 hour at home.
Thank you Salamanda X that’s heartening you have found respite care through a charity. There are some amazing organisations out there. Wishing you all the best in your search for a suitable care home.
I’m not sure what I can add here : my dad has late stage CBD, my mum is his primary carer.
His needs are complex as he has developed other health issues as well as CBD - principally he cannot do anything for himself, he is catheterised and immobile.
He was diagnosed in Dec 2019 although the symptoms were apparent well before - he played golf twice a week and was generally in good health.
After a long battle, we secured CHC funding to support his caring needs at home. He has two carers three times a day.
I took a break from my career 12 months ago to support my parents, my brother supports them as best he can as well.
My mum has always been resistant to any form of care or support - it’s only been put into place and accepted when they reach a crisis point. My mum is stubborn to the point that it has impacted her own physical and mental health to not have our dad go into a nursing home nor have too many carers that invaded their privacy.
It’s a cruel disease and for us has gone on too long given dad’s quality of life and dignity is non existent - yet our mum who is amazing continues to burden the weight.
They could have night sitters, they decline - my mum hasn’t slept for weeks or properly for over 12 months. She will be in a home along with dad if she doesn’t accept professional support.
We’re reaching a crisis point again ….
My advice is
- contact the GP and ensure an MDT team is in place. With a palliative diagnosis the Gp should follow the gold standard framework
- with the diagnosis, you can unlock more professional care BUT you have to battle for it
- depending on the stage and their needs, go an investigate CHC funding - it’s a massive support
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