Comments about this new section

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Comments about this new section

Postby ruthkri » Sat Feb 09, 2008 12:23 am

Hi Deborah, Congrats on getting this started.

I think that both of us have experienced the same feelings and others fell into definitely different processes. We all need to not be ashamed to " spill our guts" if necessary and let the emotions pour out and it does seem ro make it a little easier when you share with others who really understand what we have lived through. Everone asks "how are you doing?' and I am sure we all say the same thing in response. I'm hanging in there, I miss him/her so much. it isn't easy etc. But that is not how we really feel. Until we share with one another and realize we are not nuts with some of the thoughts we have and acknowledge some of them, I think we will not try to heal. I do feel I will never get over it for a long time if ever but maybe our companionship with all of us may smooth out some of our inner hurt. I know i can't dump my feelings on friends and this should provide us with some release.

Love, Ruth
wife of Bud who received his golden wings March 4, 2007
And now abideth Faith, Hope and Love and the greatest
of these is Love
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Postby Beth » Sat Feb 09, 2008 5:02 pm

To the Moderator,

Is there any way to move a topic from General Discussion to this new section? It was a post I started called Aftermath and was quite revealing in that we all tended to be going through the same things. It has gotten buried, even though I did bump it up at one point.

Thanks for considering this.

Days post PSP for me were more difficult than days living with it.

Beth

From Moderator: Done!
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Postby eplowman » Sat Feb 09, 2008 11:34 pm

Beth,

Yes, admin upon request can move topics from one section of the forum to another.

(I'd also love to see all of Richard's poetic posts copied or moved to the PSP/CBD section of the forum so that they can more readily be seen. Subject to his permission, of course. :) )

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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Postby momppsp » Sun Feb 10, 2008 11:12 am

As I get dress for my one month trip to the cemetary my mind races, thinking "is there something else we could have done to keep her here a little longer?" I know in my heart she would not have wanted that, but, again, I see her eyes looking at all of us, the fear, the wonder of what will happen to her, the glow of saying "goodbye". Mom was, in her heart and mind, religious and believed in God and heaven and rejoining the love of her life, Cliff, our Dad, her beloved.

We all prayed so hard that Mom would have dementia, her mind oblivious of what was going on and what was happening to her. But, that prayer was not to be. Her alertness was so hard to watch.

We told her at the end "Mom, your the bestest Mom ever. You were our rock, but now it's time to join Dad. Don't fight God's will, let go. thank you for being our Mom.

As I sit here, the first tears are running down my face. Is reality sitting in? Is it true she's gone? God, why! Why so much suffering in the world. No one deserves this. There shouldn't be such a terrible thing on earth. Why, Why, Why!!

Is she with Dad? Is she looking down on us? Is my belief so weak, I don't understand?

All I can think of now, is that more dirt needs to be put on her grave becuase all the rain. How can they put dirt on her and let it sink. It's MY MOM!

Will my heart heal? Now, soon, ever.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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Postby Beth » Sun Feb 10, 2008 12:39 pm

Deborah,

I do so feel with you all the pain and frustration you are feeling right now. The only thing is that I am farther along the path of grief than you are. I have no answers to your questions, if anything I would only add more questions, like "why does this seem to hit only the nicest, most giving and caring individuals?" I'm sure somewhere PSP has hit a selfish uncaring being, but that has not been my experience! And the families affected, have you ever met a greater bunch of individuals as the ones who post here and the other forums on the net?

I do know that time, while it might not appear so now, is our friend. In the early days for me, time was eternal. A day lasted forever and the nights were worse. But those eternities turn out to be what puts all things in place. I look more towards the life of my mother and not the disease which took that life from me.

There is not a day that goes by that I don't think about her and I think that will always be the case. She gave me life, and I was able to make her last years of life as good as they possibly could be. Do I wish that she never got it? INDEED. But I guess I sit here knowing that each of us has or gets something. She once told me, years before PSP, that it wasn't so much what happened to you in life as how you handled what happened to you. She indeed showed me that she meant it during her battle with the beast.

My thoughts and prayers are with you and all others as we find our ways in days after PSP.

Beth
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Postby Symon » Sun Feb 10, 2008 5:03 pm

DEBORAH,if you have not read FINAL GIFTS I urge you to do so.it will shed some light on some of the questions you posted today.I am reading it now and it has rocked my beliefs.I think I will become a softer more caring person,see it is already happening.

THANK YOU ROBIN :!:

SYMON :oops:
<GOODLUCK> WE ALL NEED IT. Be kinder than necessary.Cause every one you meet is fighting some kind of battle!
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Postby immacula » Sun Feb 10, 2008 9:03 pm

Finally we will have a place for those who need to vent in their way after losing a loved one. We won't have to search through so many posts and we will be able to help each other.

Thank you, thank you, Donna
Donna...wife of John...b.June 3, 1942, died June 16, 2007
St.Jude, Saint of the Impossible
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Postby momppsp » Tue Feb 12, 2008 4:20 pm

Moderator: I want to thank you for the fast response to our request. I had searched the web for grief support groups but there wasn't any that seems right for me. I believe this will be a great asset to the forum.


THANK YOU!!!
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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Postby Moderator » Tue Feb 12, 2008 4:55 pm

Deborah,

Thank Karin and Kate for the fast action. Kate's new little one (Rosemary, a beautiful bright-eyed child) is almost three months old. Kate was back in the office today, created the new Grief Support section, and "moved" the original grieving topic to it.

Members should go ahead and start new topics in this new forum section about their respective experiences and questions. (The same way new topics are posted all the time in General Discussion, Caregiver Resources, and the other forum sections.)

Again, Deborah, thank you for suggesting the new section. An excellent addition.
Last edited by Moderator on Fri Feb 15, 2008 10:33 pm, edited 2 times in total.
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Postby Robin » Wed Feb 13, 2008 1:15 am

Symon wrote:DEBORAH,if you have not read FINAL GIFTS I urge you to do so.


Symon,
It's a wonderful book. If it didn't make me cry so much, I'd like to read it again. It was recommended to me/us by Myth, another member of this list. She read it after her mom died, and still found it very helpful. Everyone wishes they read it earlier than they did.
Robin
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Postby eplowman » Wed Feb 13, 2008 2:42 am

Robin,

Tell us again about the book or article: author, publisher, price, where to get it, what it's about.

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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Postby Beth » Wed Feb 13, 2008 8:16 am

Ed,

The book Symon spoke about and Robin added her feeling about is, I believe:

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley

I was given a library copy by a friend the day Mom entered Hospice. I too would recommend it. It is probably available at your local library or can be ordered from Amazon.com. I've found that the used books on Amazon were fine, and it was easier for me to have them delivered to me than use my only time out during the week to go to the library.

Symon and Robin, please correct me if I'm wrong.

All the best to you and your beloved Rose,
Beth
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grief support

Postby ruthkri » Wed Feb 13, 2008 5:28 pm

Hi Deborah, You finally did it and I am so pleased. I would like to tell you all about a revelation I had the other night when I couldn't sleep and then all of a sudden I got the message that made me feel so peaceful and I fell right to sleep. I was asking myself, "why do I read all the posts and relive all the horrorible experiences and feelings that come from reliving that lastt year and then that lastt day. It suddenly hit me. Yes it was really bad but now just think we are not living through this any more " And I suddenly felt a surge of happiness that he is now dancing and singing, and fishing, and playing golf and best of all eating a thick juicy steak and having a drink and most of all able to share our love this valentine's day. Love to everyone Ruth
wife of Bud who received his golden wings March 4, 2007
And now abideth Faith, Hope and Love and the greatest
of these is Love
ruthkri
 
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Location: Minneapolis, Minnesota

Deborah

Postby les » Thu Feb 21, 2008 5:09 pm

It's Lesley. You sound exactly like me and the way I think about my mom being gone.

My mom had her mind too and I just wonder what she was thinking because she couldn't talk anymore. The PSP took away her voice.

PSP took away my mom.

Lesley
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Postby cinlo » Sat Mar 01, 2008 4:30 pm

Final Gifts is a wonderful book. I had partially read it when Mom had her trip to the hospital, and died there. The weekend before she went to the hospital I had asked her if she had seen anyone who had passed already, such as my father or her mother and father. She said NO, but when I asked her if she DID happen to see someone, would she tell me, she said yes. I explained to her what I'd been reading in the book, that some people saw dead relatives shortly before their own death.

While she was in the hospital, I was much more relaxed about what was happening, I think because of what I'd read in Final Gifts at that point. I told Mom, if she got better and came home that would be great, but if it was her time to go, not to be afraid, that Dad was waiting for her. I hope this made Mom feel better, I'll never know. But it did make me feel better. Also, because in the book I had read about people who were delaying death until certain "requirement" were met, I did my best to try to cover all the things I could. My brother and Mom's two brothers all came out from Arizona to see her. My other brother spoke to her on the telephone, just hours before her death. I had a chaplain come pray with us, also hours before her death. (Our family has never been church-goers.) I believe Mom knew all of this was happening and appreciated it.

Then my uncles, husband and I went to dinner, thinking it would still be hours before Mom passed away. (My brother had already returned to Phx.) Before we could get back to the hospital, we received a cellphone call that she had just died. But this had also happened in Final Gifts, that sometimes people don't want anyone around when they die and wait until they are alone. I know my mother never wanted to look at anyone in their casket, and I think she didn't want anyone to see her actually take her last breath.

Anyway, that's my plug for the book. I think everyone should read it.
Cindi, daughter of Darlene
PSP symptoms since about 2001, diagnosed 2/2004, finally free of PSP 12/16/2007
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