hello, my husband has PSP , he was diagnosed 3 years ago , but had a lot of symptoms before .
He’s now at the stage where his mobility is so poor. but he still tries to get up . He talks in a whisper , and his eyesight is very poor .
We have CHC funding , for 50 hours, which I know is amazing, but he fell so much at home that we felt it best to put him in respite care for a couple of weeks .
His case worker and lots of our friends think he is best to stay there , although he wants to come home .Its breaking my heart .
Advice ??
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bladesmad
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Hi, i understand your dilemma, it's so hard. My husband wanted to stay at home, he understands everything but can do little for himself and it similarly impulsive so so try to mobilise usually when you're not watching. We have chc and more hours - carers, male for full days, 2 nights to give me a break and 2 hours at bed times so we manage and I have full care duties 5 evening from 5 or 6 until 9 and then carer comes. I use a sara stedy to move him, I have a camera monitor at night. So will all this we manage. I say all this to give you an idea of how it can be done and I think a better life with 121 care, outings in the car by carers activities to engage him at home and help at hand, it's intrusive but works. So the answer could be to ask chc for more hours and the right strong male carers. Once you have chc they should cover all care needs. They initially offered to cover the care hours I was paying for, I kindly said thank you but I need more until they have me full days and as things progressed they added more recognising that as a small wife and big husband with high fall risk they needed to. Hope this helps xx
I recognise your situation, there is no “right answer”. My husband was at this stage when we went through the CHC process - they acknowledged he needed full time supervision (day and night) and granted 70 hours, with me covering the rest of the week as “natural support”.
I kept my husband at home, supported by a self-employed carer (female PA) and additional hours through a care company (sending male carers). The PA would take him to see family and friends and we could take him on outings when he was up to it. It was what he wanted, and though completely exhausting, I don’t regret anything at all.
Even with full time supervision, falls happen. Do you know how the care home manage this?
The psychological well-being is as important as physical safety. With speech difficulties and lack of impulse control, it’s important he is supported by a small set of people who understand and can anticipate his needs and impulses. The impulsive mobilisation demonstrates he has motivation and the urge to be independent, so there is a balance to be struck. Are the Care home able to support him emotionally?
As mobility declines, there will be less falls. The situation won’t be this way forever.
As long as CHC offers regular respite - and as long as you can manage - I would try to push for the level of funding that keeps your husband - and you - as happy as possible.
PSP is a heartbreaking illness and the caregiver burden is immense whatever you choose. I wish you all the best
it’s very very difficult, there is no right or wrong answer.
My dad has late stage CBD - he lost all mobility over 12 months ago. He is catheterised and cannot do anything for himself. He is still fully aware however his speech is nearly gone. Prior to that he had plenty of falls over the years.
My mum is his primary carer and it’s been really tough, they have CHC - 2 carers 3x a day and 4 night sittings if they require.
My brother and I are there a couple of times a week, it’s a 3 hr round trip.
Dad wants to stay at home for as long as he can and we’re doing our best to make that happen.
I led his CHC meeting post his fast track anas we needed a full DST and made it clear that dad must sit with us on the basis that no decision is made about him without him.
It’s so very hard whatever yet with dad we’re trying to respect his wishes.
Can you not request that his package of care is increased as part of the CHC? I made it clear at Dads supported by letters from his neurologist and palliative consultant that his condition was not going to get any better and he will continue to unpredictably decline requiring clinical oversight.
It’s important you do what’s right for both of you and then ensure that the CHC is adjusted to support
Just to give a different perspective, I tried my best to keep my Mum out of a carehome as she didn’t want it. But I hit rock bottom after two years of increasing need, she was in her own flat with multiple carers coming in and out and overnight care. But when left for even 10 minutes she would try to go to the Toliet or for a cigarette then be on the fall and the warden would be calling me out. I was working full time and running two homes + emergency everything. I think she had around 90 hours care a week at this point.
Mums now been in a nursing home for six months and she’s going down hill as expected but there is no way I could be doing what she needs now. She never wanted to go to one, still hates it even though it is lovely and the staff care for her well. I feel guilty for it but I need to work and be able to be me. She needs 24/7 supervision.
I couldn’t do it. So I did what the best thing was for her care, made sure she had the best home we could find and support her that way. I’m there 3/4 times a week or more if needed, have a say in all her care, make sure the staff are educated and aware of Mums illness.
This illness is very hard and I think the real question to ask is can you do it? There’s no shame in saying no, I can’t do it, before it becomes a crisis which it was in my case as I was almost at breaking point.
My mum was desperate not to move into care. We had live in care full time and top up for morning and evening routine. Despite that it got to the point where we couldn’t cope and I was dealing with a crisis every day.
The initial conversation and move out wasn’t nice but mum is happy since she moved into the home. They have been amazing and tuned into the psp symptoms.
As well as taking the day to day stress away for me, it means I can now spend more quality time with mum - not as her carer. Importantly there is also a pathway for her progression .
You should make the best decision for you in your circumstances. It won’t be easy but try to remove the guilt from the decision making.
Also think about the plan future progression as part of this decision.
There is no right or wrong. My husband died 18 months ago and spent his last 7 months in a nursing home. I was ill and exhausted. The home was ok. Eg he was Bed bound and doubly incontinent but never got a bed sore. But emotionally it helped to kill him. And I was exhausted in a different way, trying to engage with the staff, explain PSP. advocate for Alan. His death wasn't peaceful, the staff were out of their depth. I wish he could have stayed at home
I am in a similar situation do not have funding except going through the financial checks from social care. I have been caring for my husband for around 5 years. He barely speaks and requires help with everything and is incontinent. The hardest thing for me is the apathy as he has no will to do anything & only leaves the house for appointments.
I am waiting for him to be assigned a social worker to discuss he needs & what is on offer.
I work full time and feel like I am no longer his wife but just a nag. Although it breaks my heart I am realising that I can no longer carry on doing this both mentally & physically.
I believe a home is the best option for him so I can go back to being his wife and not be worrying everything moment l’m not with him. I will always feel I’ve let him down but truly believe he will be safer with 24hour care.
Not sure if this helps but you are not alone in your struggles.
You're in such a tough situation, which we've all been through and completely recognize.
I managed to keep my hubby at home throughout his illness. My Mom lived with us, and she did day shift while I worked full time and then did night shift. She was an absolute God-send, and our situation would have been completely different if she wasn't willing or able to help. Luckily we were able to manage between us, as there is no state-funded care here as there is in the UK.
For me, the decision was around 2 things. I promised to keep him at home unless (1) it became physically unsafe for him or us, or (2) it became mentally / emotionally unhealthy for him or us. We managed to navigate both and kept him at home, but I did discuss it with him so that he understood this too. So the decision was always grounded in what was best for all of us as a collective, not him vs me.
What constitutes the tipping point on either of the 2 criteria is very personal and will be different for everyone. You should feel completely empowered to make that call and decide for you and your family where the line is. Nobody else understands the dynamics and emotions involved.
Also, try and give yourself some wriggle room. Be clear about which decisions are '1-way doors' - that once you make them you can't come back, or '2-way doors' - where you can change the decision later. Maybe right now, your husband being in care / or at home is a 2-way door. You can keep him there a little longer, or choose to bring him home, but you also have the option to move him to the care facility again later. If it's a 2-way door decision, then that will lessen the pressure on you.
I don't know if this helps, but I'm wishing you lots of strength x
I really appreciate the different perspectives given here. The important point is "ditch the guilt". Whether the patient is your spouse/partner or parent, you can only do what you can do. You cannot be expected to to sacrifice your physical and mental health and/or your personal and financial safety. I have enormous admiration for the sons/daughters/in-laws and even grand children who go far out of their way to enable a parent to stay at home - when that is a viable option. Similarly I have no criticism whatsoever of those who have had to make the hard decision of moving their loved one to a care home when the patient doesn't want to be there.
That said, I think there is an additional emotional aspect of moving your spouse or partner out of your joint home - it's not just "geography" or a change of care arrangements - it may also feel like it is ending the marriage or relationship and it adds to the heartbreak.
Be proud of what you manage(d) to do for them, and don't let yourself dwell on any "alternative realities" or "if only..." scenarios. PSP (and CBD) are hard enough, so be kind to yourself.
A lot of very good replies already -- the only thing I would add is to extend on what Bergenser asked about how the respite care was handling your husband's needs -- that one hits home for me, as my mom was in a rehab facility for 3 weeks and it was hard on everyone, concluding the facility. We were forced to bring in extra help, as they were utterly unable to cope with her. If you do decide to not have husband at home, the only advice i would give is to make super sure the place he is at fully gets how his needs are going to change and amplify. Good luck, you are doing great.
Thankyou for taking the time to read and leave your comments and advice, you are truly wonderful people, who get it , I’m so sorry your in this club , but I’m also grateful.
We have decided as a family to leave him in for now see if he settles , with lots of visits and activities. And then review the situation in another months time ( long time in PSP world )
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