PSP Association
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Question about experience with finally being free of PSP

Hi all,

I hope that this does not seem like an inappropriate question but it has been weighing on me for some time. I have read posts from carers about the experience of when their love one has died and was finally at peace. Some report that the last few days were so awful and their loved one suffered and others report that their loved one went to another place "peacefully".

I know that each patient is affected differently with PSP, but what are your thoughts on why some are so painful and others peaceful. As a nurse, I have seen many peaceful end of life moments. When discussing with my husband, who approximately is in his 5-6 year of PSP, I try to assure him that as his body shuts down, he will be in a peaceful state. Is this just wishful thinking and am I fooling myself?

Thanks for your thoughts,

Diane

14 Replies
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Diane, in my experience you are right. In my husband's case his last week was carefully and expertly managed by the hospice team and the nursing home staff. He had previously decided that he did not want any intervention once he could no longer swallow and so he was just kept comfortable and pain free with a mixture of drugs. It was still a traumatic time for myself and the rest of the family, but he himself was peaceful and each of us benefitted from being able to spend quiet time with him in those last days.

Several others in this group have expressed the same feelings about the last few days, when they didn't feel they had to fight any more, being very special and somehow healing.

I hope you and your husband can feel the same when the time comes.

Vicki x

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I had similar questions about the end of life for my husband who had CBD. I was afraid for both of us and wanted to know the signs.

I joined this site in my search and found a reference to Barbara Karnes who is a Hospice Nurse and very well versed in the art of dying. I found books and webcasts available easily that helped me to conclude my search and I found myself less worried about how I would face the event, and that I would be able to read the signs.

Yes, my husband had a peaceful passing. He had aspiration pneumonia after his swallow reflex suddenly stopped working. His coughing was eased by suction and then by drugs which left him calm, and gradually unresponsive. I spent 2 days and nights by his side and he left while i was not there. I had no doubt in my mind that this was the right course. My concern earlier had been because he had a pacemaker fitted, and i was uncertain whether this would prolong his passing.

It did not and my understanding now is that the body chemistry changes so that it does not continue to work. I don't believe the pacemaker had any effect on the timing of his death.

He was weak and tired and had lost the desire to fight. His only concern was that i would be all right. Once i assured him that i would be, he settled to sleep peacefully. Although i held his hand and talked to him he did not respond. If he had a fit of coughing i only had to find a nurse who then administered IV drug to calm the urge. He also had a morphine-type drug for pain. I was assured by the Dr that this was not a lethal dose and that the effect on his system could be to slow his breathing.

I found it a peaceful passing in that any pain and coughing were able to be controlled and he was well looked after. I had no doubt that his time had come and that he was aware of it beforehand, in time to say his goodbyes.

I hope you find the answers you are looking for, and that you find an interim peace of sorts - as i did.

Hugs

Jen xxx

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I think my husband had the most peaceful, painfree two weeks of the last 6 years of PSP once he had decided he had had enough. He wasn’t on any medication, never saw any professionals after the day he said he didn’t want any more food or water (I sprayed his mouth and used the suction machine). I just made him as comfortable as I could and spent most of the two weeks holding his hand, talking to him about the good times we had had and telling him how much I loved him. I had numbers to call, hospice etc, if he was in distress and a supply of morphine to be administered by professionals but he never was. He was still able to squeeze my hand until two days before he died and indicated he was comfortable and at peace.

My husband did have a strong faith and knew where he was going. He, nor I feared death so when his time came he just accepted it and waited to be taken.

I hope and pray the end is as peaceful for your husband.

X

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A big hug NannaB with 6 months delay.

Have a nice trip with Heady.

Luis

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Hi Diane, like you, I was very concerned about the end. Would it be painful, distressing, all the things we worry about. For me, it was a very special experience. Steve's swallowing, finally gave up and I think he did as well. Like the other have said, he was constantly being attended by the district nurses, who had been useless before, suddenly knew what they were doing. The doctors, back in their comfort zone. Drugs were administered, when needed, to keep him comfortable. It was Christmas, so I lucky, I had family around. They did the little caring needed, I was able to be his wife again. For me, having him die in my arms, with me telling him I loved him, is something after all the years of trauma PSP gave us, I will be eternally grateful.

We all have to die, one of life's guarantees, from what I have read over the years of being on this site, PSP final days, is one of the better ways. It's just the six years leading to that, that suck!

Sending you very big hug and much love

Lots of love

Anne

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yes, the final days were not so bad for us.

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How great my admired Heady !!

Have a nice trip with Nanna

Sending you very big hug.

Luis

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Sitting here crying thinking I have to go through that as well, not sure how I am going to cope? I just hope and pray he has a pain free passing, PSP is a hateful illness. Love to you all. Xxxxxx

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Yvonne,

Me too. I don't know how I'm going to do it. I don't think I can. But here we are.

Bless you.

Cuttercat

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Hi Yvonne and Cuttercat, please try not to think about the final days. I know that's hard, but today needs your full attention, your men need your love now. I promise, you will be able to cope, come the evil day. Like you are coping in caring for your loved ones now, there is no other choice. You will want everything as peaceful and calm as possible and you will achieve this.

Sending big hug and much love

Lots of love

Anne

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I would like to thank everyone for your replies and support. I have faith that Dave's end will be a peaceful one. Being present for my father's death many years ago was the most beautiful and spiritual experience that I have ever encountered. I pray that Dave's experience will be just as beautiful.

Thanks for listening.

Diane

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I think we all fear what and how the final days will bring. I have been witness to 4 deaths of close family and all very different. I hope when Bens time comes it will be well managed, peaceful and painfree. Ben says he isn't afraid of death but I'm sure he worries about the time in between ( as I also do) Thankyou all who have posted on their experience of the final days of their loved ones, I will hold onto the these and hope, when the time comes Ben's will have a peaceful passing. I think we all hope for this at the end of our lives.

Kate xxxx

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Chris had a peaceful end, at home. Excellent care from the hospice team. No medication, no pain - just gently letting go, having seen all his family.

It had been a big worry for us both.

love, Jean xx

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Diane yes Ben my husband with PSP around 6 years they say that is the average with this terrible disease He passed past Jan 2017 very peacefully He stopped eating or drinking 10 days before I believe his body was preparing for death he struggled with breathing and nervousiness Hospice gave him oxygen and he had to live on around clock morphine and atavan to relax him the last week before he went he kept calling me MOM so I knew he was in and out of his body he never complained I miss him dearly Carol2660

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