Is Grieving After PSP different?

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Is Grieving After PSP different?

Postby MUSICFAMILY4 » Thu Feb 09, 2012 9:26 am

Just lost mom to PSP after many long years of decline, helping to caretake and the heartbreak of watching what PSP does to a wonderful vital person - taking away so much - speech, swallowing, movement. People ask how we are doing and most of us keep saying "It was a blessing" which is true. I'm wondering how this will be different from other deaths and losses. When my father died it was an illness, but relatively brief - months - very different than many many years of PSP.

Also, I've been told that after the weekly caretaking (visits, meals, doctor appointments, etc.) ends, there is a sort of "crash" because you don't realize that you will need to reappropriate all of that time. I'm wondering if anyone a little bit ahead of me in the journey has advice. Right now we have responsibilities still (which I don't even feel like doing), but once the arrangements are over, I feel like a year on a beach would be too short - not sure if I'm in shut-down mode or what? Normally I'm an energetic person and I just feel like doing nothing right now. Is this part of it? Thanks to anyone who responds. Cathy
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Re: Is Grieving After PSP different?

Postby Robin » Fri Feb 10, 2012 8:34 pm

I felt like I was "doing nothing" for a bit more than a year after my father's death (autopsy-confirmed PSP). I slept a lot -- took lots of naps.

I definitely felt like I had something akin to PTSD. I re-lived many of the horror stories, multiple times a day. Eventually I got to the point where I could say to myself, "I've already thought about this today and it's time to move on to another topic."

As they say, things do get better with time. But it takes a LONG time.
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Re: Is Grieving After PSP different?

Postby webgirl10 » Wed Feb 27, 2013 9:16 pm

I haven't been here lately. It's been seven months since my beloved Joan went to God. Although this is an old post that I am responding to it, nevertheless, it hit a note with me. I have lost other members of my family. Both parents,Grandparents and a brother. For you animal lovers out there...well..say no more! NEVER have I witnessed such horror as I have these past 7 years of Joan's illness. Is the grieving different you ask? To see your loved one lose everything piece by piece, all dignity gone. So much talk about Alzheimer's; at least those patients, at some point, don't know where they are, who they are, and sometime, who you are! I don't think I will ever wash away those memories. The flash backs come. I have no guilt or regrets for what I did or did not do for Joan, but sadness is always there when I think that in the last few months of her life WE could not talk with each other. I could see in her eyes the frustration. It was awful! Yes, yes, yes..I believe whole heartedly that grieving after PSP is different. One up moment, if I may: I had a dream. Joan was alive and well. I was very shocked to "see" her and said that I thought she had died. She put her arms around me and said: "You know I'd never leave you." I woke up and realized that it was only a dream. I awoke in hysterics. I just joined a bereavement group offered by my local Hospice. I mentioned this dream to the group (and leader) and got very positive responses. I feel her with me every breath I take.
Thanks for listening.
webgirl10
Caregiver...my partner of 48 years, was diagnosed in 2005. We are both in our early 70's we live in New York
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Re: Is Grieving After PSP different?

Postby Robin » Wed Feb 27, 2013 9:32 pm

Glad to know that you feel your beloved's presence. That must be very comforting.

And glad you joined a bereavement group. I do think such groups can help a lot.
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Re: Is Grieving After PSP different?

Postby fayelee » Fri Apr 05, 2013 11:38 pm

Its been 14 days since my mom left me and I'm not looking forward to this long grieving period. I just don't know if I can survive it after taking care of her for 12 years and going through all the changes with her. I am not relieved yet. I am having trouble staying in my house (leaving lights on, keeping doors shut & locked). Can't get use to the quiet (no moaning, and screaming from hallucinations) where she lived with me and sleeping was also a problem until my doctor prescribed lorazapam. I don't want to rely on drugs and weaned myself off antidepressants about 2 months before she died. I don't want to depend on these either. I just want my life back but can't remember what my life was or how to get there. I know its too soon but where do you find those bereavement groups?
Cynthia
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Re: Is Grieving After PSP different?

Postby Robin » Tue Apr 09, 2013 9:39 pm

Cynthia,

Your mom would want you to find a way through this sadness...

For bereavement groups, try contacting:
* local hospital
* local hospice organizations (Most will let non-clients participate as part of their community service.)
* local churches or synagogues
* local senior center
* your doctor's office

Is there such a thing as starting a bereavement group "too soon"? I don't know. That sounds like a good question for the group leader.

Robin
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Re: Is Grieving After PSP different?

Postby TonyGee » Thu Apr 11, 2013 3:28 pm

I do have a friend whose wife passed away from Lou Gehrig's disease and it sounded like his experience was a lot like mine. Perhaps one could say the grieving experience is somewhat similar for those left behind from both ailments.
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Re: Is Grieving After PSP different?

Postby Dharma » Sat Aug 16, 2014 6:56 pm

Robin wrote:I felt like I was "doing nothing" for a bit more than a year after my father's death (autopsy-confirmed PSP). I slept a lot -- took lots of naps.

I definitely felt like I had something akin to PTSD. I re-lived many of the horror stories, multiple times a day. Eventually I got to the point where I could say to myself, "I've already thought about this today and it's time to move on to another topic."

As they say, things do get better with time. But it takes a LONG time.


Hi Robin,

My husband died three weeks ago.

I've been reliving so much - every day. By the time my husband passed he was so incredibly thin, it was so very hard to watch. He was also very agitated which was helped with medication for his last weeks which made him very peaceful. I will always be grateful for that. His strength gave me strength, but nonetheless, it was still so hard.

I'm really trying to be positive and remember all the wonderful times we had. When my husband passed I felt an incredible warmth and fullness fill my chest - almost like his very soul (or God's) had touched mine. I can't be sure. But I try to remember that feeling and feel blessed.

I'm so heart broken losing my 'soul mate' for I truly feel he was/is. I feel we will be joined again one day.

I'm taking care of myself but other than that I feel kind of like a bird with a broken wing....

It just feels good to put my feelings to words.
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Re: Is Grieving After PSP different?

Postby Robin » Tue Aug 19, 2014 10:05 pm

Dharma,
I'm very sorry for your loss. You may be in the same bird-with-a-broken-wing state for awhile. Try to be extra kind to yourself. Have you thought about joining a grief group? I wonder if keeping a journal would be helpful to you? You are obviously a beautiful writer. It's wonderful that you have a feeling that your husband's soul touched yours. Try to hang on to that very tight.
Robin
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Re: Is Grieving After PSP different?

Postby Dharma » Wed Jan 07, 2015 5:30 pm

Robin wrote:Dharma,
I'm very sorry for your loss. You may be in the same bird-with-a-broken-wing state for awhile. Try to be extra kind to yourself. Have you thought about joining a grief group? I wonder if keeping a journal would be helpful to you? You are obviously a beautiful writer. It's wonderful that you have a feeling that your husband's soul touched yours. Try to hang on to that very tight.
Robin


Hi Robin,

I just found out the results of my husband's brain autopsy from Columbia Presbyterian in New York City. Indeed, it is PSP. I knew in my heart and soul that it would be and the MRI was the classic image of the "hummingbird".

My husband passed away this July 29th. Do you know this September 17th (my birthday), when I was in a beautiful park just north of New York City I looked at some beautiful flowering trees and out of nowhere - suspending above a flower was the most amazing hummingbird! It took my breath away. I wouldn't put it past my husband to give me such a beautiful gift on my birthday - it was most likely his way of saying "I'm OK - I'm free". It was so very, very special.

I just wanted to let you know the results. Now I will find some quiet time to reflect.....

Warmest,

Dharma
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Re: Is Grieving After PSP different?

Postby eplowman » Wed Jan 07, 2015 9:45 pm

A beautiful, affirming story, Dharma. Thank you for sharing.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Is Grieving After PSP different?

Postby Robin » Thu Jan 08, 2015 4:26 pm

Dharma (Jane),

Thanks again for donating your husband's brain. I'm glad Columbia was willing to accept the brain donation. Five months is pretty good for the neuropathology report.

Thanks for sharing the sweet message you received on your birthday. That must be very comforting.

Robin
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