Impact of family death on PSP

[Inarticulate]

Hi

My dad who lives with us, has been diagnosed with PSP last Nov (confirmed) and we have been providing care within the family for last 2-3 years since his falls onset. It took a long time for diagnosis. At present he is wheelchair bound. We provide toileting, showering, clothing and bedtime care. He still has some speech and can make his needs clear. Swallowing is harder but he still able to eat solid non-puréed food. He had some Botox treatment in one arm and the effect of that on him was wonderful. Now though he is stiffer than ever.

We have tried to maintain as neutral a family home as possible as highly emotional events seem to impact him.

Unfortunately my mum has terminal cancer and is coming towards the end of her life. We’ve managed care for them both but I’m really worried about what will happen to dad when mum passes.

I’m not sure how we can plan for this. We are getting adult social services involved and I’ve asked for him to be moved to a palliative care support team so that we can do more to manage his symptoms. I really feel like we’re running out of time but don’t know what else to do or how long we have with them.

Any help/advice would be appreciated.

R

[kenh1]

Is your mum in receipt of palliative care? If so her care team should be concerned about her family concerns and would take your Dad on board. Our local hospice offers day care to anyone with a terminal illness which includes both your mum and dad. I accessed this for my wife through her GP. Love and prayers. Doreen & Ken.

[Inarticulate in reply to kenh1]

Yes she is - we have community palliative teams for mum. We have gp hone visits for both mum and dad but didn’t realise that palliative might be for family needs. Thanks - will chase-up.

[kenh1 in reply to Inarticulate]

Our local hospice have provided both day and night sits to allow me some rest. Many of the nurses approach me with the words "And how are you?"

I have an allocated Palliative care nurse who rings me up every so often to check I'm alright. The Palliative care in our local health authority is run from the hospice and in my opinion second to none.

I hope you are able to get the same level of care.

[AliBee1 in reply to kenh1]

Hi. We have just been contacted by the Palliative Care Team from our local Hospice who will be coming to see us on May 16th. I pray that we too will help with the problems currently being encountered. Thank you. AliBee xx

[kenh1 in reply to AliBee1]

That is good news indeed. I'm sure they will be able to help. Ken.

[Hidden]

What an ordeal to deal with. One would be bad enough.

[Dadshelper]

Sorry to hear you are having to deal with all of this at once. Is you mom still at home with you? No one can say for sure how long either parent has but there are many cases where spouses have passed away within days or even hours of each other. Usually these are couples who have been together for many years and are both quite elderly with some sort of medical issue. The symptoms you describe for your father are not really end stage ones, I say this simply because he is eating solid foods.

I agree with Kenh1 that your mom's palliative care team should offer some type of support for the entire family, including your dad. It never hurts to ask them if they are willing/able to take on your father's care also.

Ron

[Inarticulate in reply to Dadshelper]

Thank you - have asked for his OT to visit and GP. It’s whether the changes in Mum are going to ‘escalate’ his state. Can that happen?

[Gambee19]

Did your dad just get one Botox injection because he should get injections every three months. The paralysis effect wears off.

I hope the stress of your situation doesn’t get you or your dad down.💕💕💕

[Inarticulate in reply to Gambee19]

He had a ‘test’ shot of a lower dose and we were told it would be three months but next appointment is June and he had his shot in Feb and it’s worn off. We’ve chased but been told it can’t be sooner. It’s depressed him.

[Gambee19 in reply to Inarticulate]

Three months is the standard time between injections. Ask the doctor at your next Botox appointment to “up the level”. Explain that the lower dosage isn’t having impact. The doctors want to cautiously up the dosage because they don’t want to cause loss of muscle control, but they need to find a dosage that works. Tell your dad not to get discouraged..they will find the correct dosage. My last injection didn’t work so I talked to the doctor on my next appointment and he changed where he gave the shots. My dystonia has slightly changed. Good luck. 💕💕💕

[LuisRodicioRodicio]

Hi Inarticulate!

I have nothing to add to the suggestions of my "chat" colleagues except my solidarity and a big hug.

Courage and luck.

Luis

[AliBee1]

Hi. How very sad and worrying for you and your family. There is little I can add to the suggestions from the others who have replied so helpfully but just want to send love and a hug. Problems can sometimes seem insurmountable but sometimes the answer is out there just waiting to pop up. Out of interest is your Dad aware of how ill your Mum is?

AliBeex

[Inarticulate in reply to AliBee1]

Yes, but she doesn’t know that his condition will take him too.

I think that if I’m honest, his medical condition has been crueller. This is mum’s second time with cancer and the first time he did everything and didn’t want us to do anything. Now he sits and watches her deteriorate and can’t even get up for himself.

[AliBee1 in reply to Inarticulate]

I agree this is crueller. My 1st husband died of asbestos related cancer when he was 55 but Nigel is just deteriorating before my eyes slowly. If your Dad still has mental capacity have you asked him what he wants to do when your Mum is no longer there or is that sort of dialogue not open? Could you discuss a home with him if that is what he wants and if your Mum is well enough she could go with him to see what she thinks of it so that it is a decision that he will know she has made with him. I know that this may not be possible: it is just an idea. Love AliBee

[Inarticulate in reply to AliBee1]

Dad wants to be at home and does not want to be in a nursing home - though ultimately that might not be a decision he has control over. We know that conversation might need to happen again as he’s deteriorated. Avoiding it though.

[AliBee1 in reply to Inarticulate]

Can understand why. Good luck xx

[doglington]

It seems to me that you are doing really well. It's hard enough taking care of one parent.

I know how stressful it is wanting to do the right thing and not knowing what it is. You can only do your best with the information you have at the time.

I found the hospice and their palliative team were superb and so supportive of me.

Of course your father will be affected by the loss of his wife. How he will react is impossible to predict. You can only support each other as a family.

One of the effects of PSP on my husband was that he became more self centred and therefore less affected by anything than he would have been previously . One blessing !!

I hope things work out for you.

Big hug from Jean xx