Time I think is running out: Not sure what... - PSP Association

PSP Association
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Time I think is running out


Not sure what is truly going on,but at this point it's a pick a poison, PSP or his cancer . he has taken a major downturn he lost his ability to walk and when you stand him up its like his body is broke in half.he is now been caterhrized and his urine is a Burt amber color . he is hydrated and on antibiotics . he said he is done..

He/we have been battling psp for 11 years and prostate cancer for 14 years . I refuse to take him to hospital because of the covid they won't let anyone else go in with him so he would be totally on his own . Doctor is phoning in the morning. See what's what in the am . I know we are both very tired, he has rallied before but I think at this point I think it would be cruel.


37 Replies

Best wishes to you both, will be thinking of you xxx Helen xxx

Oh Dee. What can I say? Sounds like you may be right.

A tea coloured urine is an indication his liver/gallbladder is not functioning properly. Are the whites of his eyes yellowed too? It may be something that can be fixed with an antibiotic and rehydration.

If that treatment does not make an improvement, and your love has had enough, maybe you can plan together how you can both manage this end stage and be together.

Talk to his doctor together again. Get Hospice or Palliative Care involved, if that is the advice, and go from there.

Yes. I agree - keep him at home with you! But find help/ additional carer to look after him and keep him comfortable so that you can concentrate on being his wife and love for however long it lasts.

Enjoy each others company for as long as you are able.

Big hug!

Jen xxx

in reply to honjen43

Jen, I thought your response was so loving and caring. Just wanted to let you know in words rather than pressing the 'like' icon. xx

in reply to Nanny857

Thank you, Marion.

When hubby was sick, I didn't know how to deal with myself or what I guessed was to come. This is where I found the knowledge and care.

So I just pass it on!

Even tho his last 6 months were frantic, I can look back now on numerous happy memories.

In today's chaotic world, foreknowledge and courage is necessary to plan a loved one's stay at home for that time. So many have been denied the opportunity!


Jen xxx

Did you get hospice involved? They would be coming to you.

It does sound like he is ready.

It is exhausting physically and mentally for both of you

Oh Dee thinking about you, sad times, sending you a big hug, can’t find the words to say how sorry I am. Yvonne xxxx

I agree totally with you... the idea of taking our loved ones to a hospital at this point and not being able to be with them is not much of a choice. Sending hugs to you both at this most difficult time... Granni B

Oh the journey you are on, double duty - praying for your situation and sending well wishes of continued strength as you navigate ... xo Kim

Oh, Dee

You are incredible the way you manage your caring.

I'm so sorry things are so bad for him now.

Ys, hospitals are not a good place to at the moment anyway. They are a Covid hot spot.

I hope the GP can do something.

Thinking of you both




I’m so sorry for all that you’re going through. I hope the doctor will be able to send help to you. I would avoid going to the hospital as well. Thank you for keeping us in the loop and I will be keeping you in my thoughts. Sending hugs.

Xoxo ❤️ SewBears

Dear Dee,

I'm so sorry, you both have had a very long battle, not only having to cope with one evil disease, but two. I so admire you both. I am with you 100% in keeping your husband at home but I add, please make sure you are given all the help to take over the role of caring so you can return to being a loving wife. It's hard to do as we think only we can be the best carer for our loved ones, but believe me, this will give you some comfort for the days that lie ahead.

Keeping you in my thoughts and sending lots of love to you both


Dear Dee

Thinking of you at this difficult time and sending you love hugs and strength.

Love Sarahxxx

Dearest Dee

I suspect you are right, talk to your doctor so that you can plan and make however long you have got together as comfortable as possible.

My heart goes out to you particularly as four months ago I was in the same situation. Try to get as much support in as you can, perhaps someone to keep watch overnight to allow you to rest.

Hopefully this will allow you to become his loving wife again and less of a carer.

Keep on keeping on

Sending huge hugs


Hi Dee!

It is very hard but I think you are right. It is inhuman and cruel to die alone. Very hard and stressful for the caregiver. Get all the help you can to keep going.

Courage, luck and a hug.


Thinking of you and praying for you both.


Send you both a virtual hug xxxm

I think you are being very wise. Get the Dr to give what help he can and to make sure your husband is comfortable but there does come a point, Covid or not, where there is no point going into hospital and it is a better option for the sufferer and the carer to be at home in a familiar place.

Thinking of you both at this tough time but what can also be a very comforting time. I treasure the last few days spent at home with Mum, it was a sad but very special time. xxx

thoughts are with you Hugs xxx

I'm sooooooo very sorry.

I think I too would choose the decisions you have gone with. Bittersweet is the good-bye.

Monday will mark 3 years, May 4th, of my 55 year old son's death from PSP.

Los Angeles, CA, USA

Only three years. I’m coming up to two. Seems like yesterday. I’ll keep you in thought and prayer.


Thinking of you Margarita...❤️💖


Gosh, it is good to hear from you. I guess neither of us post much, but we still hang around.

Big hug via the internet that I couldn't do in person.

Keep safe!

You bet I will 😊. Hugs back at you! ❤️❤️

Dear Dee. My heart goes out to you both. Big hug. AliBee

I know how you feel. Be comforted knowing he is with you. That’s the important thing. Let it proceed as God wants it. Slowly and sweetly. Just like you!


Dee, I've been where you are, PSP and prostate, it's not easy. I hope you have some help. Definitely get hospice involved if you haven't already. They will be great support for you. and they will come to you, get you the equipment you need and help you with bathing, etc. It's so much better than trying to take your husband to Dr appts. I wish you well.


Dear Ser I agree totally with LuisRodicio, and all the folk there.

While your husband is clear mind, he has the right to stay at home. Perhaps his bladder infection could be treated at home. Could be he will still decline in his health for a long time or couldn't.

You are brave, you will be the companion of your hubby.

I wonder if you have any help in this sel-fisolation condition.

I don't know in what country you are. But fight for a institutional help.

Besides, the GP must attend the patient at home.

Warm hugs, we are here.

God bless you both! You truly have fought the good fight.

My darling husband died almost exactly 4 months ago with PSP. He suffered every complication and indignity and death was probably a release for him. It was Hell for both of us and after 50 years together I am now in Hell for his absence and my longing for him.

Hang in there Wifey: you are in the worst of it. It never disappears but it will get easier. I too would never wish the psp/cbd life back for hubby, but would do anything to have him back healthy. No wonder we envision Heaven.


Anne G

Thanks for your words; you are right I would not wish him back to suffer as he did but it seems the grief for me is endless. We had an immediate family visitation right after his death in January but had to cancel the April memorial service because of Covid-19 quarantine. Cannot schedule another date because it’s unknown how this virus will play out. I can only emphasize with all those who lost loved ones during this pandemic and feel gratitude that my love was not isolated from family during his ordeal. My heartfelt prayers to all those who fought and those still fighting.......

Thank you for your ENTIRE message......"No wonder we envision Heaven".

Love from a mom of a son who died too early from THIS HORRIBLE disease, PSP.

Margarita, Los Angeles, CA, USA

So sorry ; it depletes everyone and you never know which way to turn for help let alone answers

I am so sorry you have reached this point. I totally agree now is not the time for hospitalization. Steve and I have talked about that and have both agreed he will stay home whatever comes. I have called in hospice. Right now, because of Covid, we are not using the aides that are available, but the nurse is always a phone call away, we have supportive care medication in our home, and he is using oxygen at night to help him sleep because of his COPD. I don't know how long we have. I was reluctant to call hospice because I didn't think we were that far in this journey. Now, I know it is back up for me. I've got a nurse on call 24/7 who will video chat with me until she arrives at our home. Our nurse tells us most people wait too long to call in hospice. I now understand what she means. We are both more relaxed now knowing that we are not alone at any time. I don't have to call the squad to evaluate the severity of a fall. I know how to handle a choking episode, and I do believe the quality of both our lives has improved from the reduced fear of the unknown. My prayers are with you.


May every minute of rest you get feel like a thousand.

Big hug for this sorrowful time Dee. XXX

Anne G.


If he says he is done, believe him. I agree with the others - keep him home if at all possible and get Hospice (or the Canadian version of Hospice) on board now. Be sure they give you a "comfort pack." This contains any and all drugs he might need. He may not need them but you want to have them in your home in case it's necessary. Even if you don't want the Hospice workers coming in on a regular basis, they can teach you what you need to know and are available on the phone 24/7.

My heart goes out to you. Hoping there is sweetness in this time for both of you.

Hi, Dee. I have tried several times to reply to you, but my machine at home is getting cranky, I think. I'm at work and will hope this one gets to you.

Yours were some of the earliest posts I read, back when I first came here. You and your husband have had such a long ordeal. You have been so stalwart. I have always admired you.

I wish as much peace for you both as is possible now. My guy decided he was done and that was that. It's anguishingly hard to watch, and yet we hold on. I am grateful I was able to have him at home to the end. Nowadays, with the hospitals and other facilities off-limits to family, it seems like no choice at all.

The hospice nurses were wonderful to us. I hope you have help like that.

I send safe hugs from across the continent. You are in my thoughts.

Love and peace,


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