struggling with PSP

[Newstead1]

my husband is 72 and was finally diagnosed with PSP in September 2023 after a steady decline for sometime in his mobility. His speech is slurred and difficult to understand and he has swallowing difficulties now. He falls a lot and is covered in cuts and bruises. I am struggling to cope as I myself have a heart condition and am very depressed as I can’t go out much. I have organised respite for 4 weeks with a view to it being permanent if he likes it there. I feel guilty about this but I don’t feel comfortable with having live in carers.

[Sun-flowerwearer]

I’m sure I’m not out of place stating we all understand how you feel. It is very overwhelming and so hard emotionally to process the diagnosis and what it means.

Everything we do and say and think we analyse to see if we should feel guilty but all we are doing is our best. 4 weeks is a good length of time for you both to decide if the care home you have found is suitable. Please try and not waste what emotional resources you have on feeling guilty xx

[DaffodilPrimerose]

Please don't feel guilty, know that you are capable of making the right decision based on care, comfort and safety need. The care facility will be so much better equipped to take care of his needs than we can possibly ever be at home. It could be the kindest thing to do to make the decision for a permanent transition. The 4 weeks is a wonderful opportunity to make the decision. My advice is watch carefully in the four weeks and ask yourself:(1) are there less falls

(2) is moving the psp patient easier and more gentle in the care facility than at home

(3) is personal care quicker, gentler, less traumatic than at home

(4) is feeding easier

(5) am I better able to be a joyful visitor than a tired carer making our time together better quality time

(6) do you see a relaxation in the body language of your psp patient (watch the little sighs like less clenched muscles, eyes that are careful and not red and irritated)

(7) do you feel a physical improvement in your own physical health

Sometimes if we make a decision not to move the patient to a care facility, it is because of placing the management of our own guilt ahead of the comfort of the patient. We won't see it that way at the time because it is a natural and loving way to react really but we have to look at the positive impacts on the patients comfort and care first ahead of our own feelings.

I hope that makes sense. It's just how I see it now a few years down the line.

[Newstead1 in reply to DaffodilPrimerose]

Thank you for the reply. It makes so much sense and makes me feel better.

[Dance1955]

you’ve done an amazing job to get this far we are only human be kind to yourself

Take care x

[David750]

Hi Newstead1, if you have not already done so, please register with the PSP Association (pspassociation.org.uk) by phoning their Helpline. It helped me a great deal to be able to talk directly with someone who understands. They can send you information and point you to any applicable support available in your area. There are local support group meetings in some areas with on line Zoom Groups for carers, Link Volunteers who, if there is one in your area, may be able to visit you to appreciate your circumstances and provide support. There is other online support being introduced in April.The above in no way replaces the valuable advice and help offered here which helped me with my wife with PSP.

[Hdee]

Dear Newstead1, I felt the same when my Mum went into a home, there’s a lot of guilt involved with caring for someone with PsP. Someone at the time told me when she went to the home - “Now you can just focus on being her daughter and not her carer” and I thought about how wonderful that would be to feel that again - for her and me - and it was. You can now focus on being his wife and him being your husband (in whatever form that now takes) and you need to look after yourself in order to be able to be there for him. Please be kind to yourself, sending you a big hug, Helen

[DameAlice]

Hello there, I very seldom contribute to this page but my husband's PSP has moved on since he went into hospital at Christmas with Covid. He came home for a few days but had to go back into the home again and it has been agreed that this has to be a permanent arrangement now. I am also full of guilt, sadness and a multitude of other emotions and am struggling with our new "normal" more than he is, I think. I, like you, could not envisage the alternative of full-time carers in our home, which anyway would not lend itself to that. It is a cruel disease where painful decisions have to make each step of the way and I hope you are receiving some guidance and support. My husband and I have no family so it has been and remains a truly emotional struggle but we just manage one day at a time.

[Newstead1 in reply to DameAlice]

thanks for your reply. I do have two daughters and they do what they can but I don’t want us to be a burden on them. One has got two toddlers and lives a way from us so she is very limited in what she can do.

[nayook]

Hello Newstead1. Your path to this point is very similar to ours. Robert’s symptoms were similar before he went into care. I was in my early 70s then, and like you I have heart issues and was struggling to cope. 4 weeks of respite was arranged. The Care Home strongly advised that he stay there permanently as they felt his needs were more than I could manage. Now, 5 years after his death, I still have injuries sustained when struggling to manage him after falls. Don’t feel guilty please. I look back and wish he’d gone into care earlier. PSP is such a difficult illness. Just enjoy spending as much time with him as you can. Bring joy to him, without the burden of full time care. Love and best wishes to you. Lynne(Australia)

[Newstead1 in reply to nayook]

Thank you so much. I feel more reassured that I’m doing the right thing. I just hope he likes being in the home or I don’t know what I’ll do. It’s a lovely place with lots of activities and people to talk to. It’s got to be better than sitting at home watching boring tv and nodding off to sleep all day.

[Leosta]

What others have told you is invaluable. I didn't have to make this decision, but as others have said caring for a PSP patient is exhausting physically and mentally. Just remember that your health and wellbeing are just as important as your husband's. If you keel over he would have to go into a home anyway. Don't let it get to that stage. You're making the right decision.Sending you blessings.

Leosta 💟

[Dosco]

Moving my wife to a continuing care facility was the hardest decision I have ever made. However, on balance she received better than I could provide at home. This decision meant she had access to specialized care such as dieticians, doctors, physiotherapists, etc. This was especially helpful in the latter stages of PSP.It was a tough call but it gave us more quality time together. My wife passed away peacefully last November.

[Newstead1 in reply to Dosco]

So sorry to hear about your wife. I do think my husband will get much better care in the nursing home than I can give him.

[bbr49]

You are certainly making the right decision. You need to stay well so you can enjoy the time you have left. As the disease progresses he will need equipment that you don’t have at home.

[eaglet]

The hydraulic sit to stand help you get him from point a to point b without fear of falling.