Moderators: Moderator, phpBB2 - Administrators


Postby les » Mon Oct 20, 2008 12:09 am

Hi everyone:

My uncle died two weeks ago quite suddenly. He is the husband of my mom's sister.

My poor poor aunt, she just lost her sister from PSP in January (my mom) and now her husband.

I was not very close to my uncle but was so so sorry for my aunt and definitely felt her pain. She is very close to me now because we went thru the PSP together taking care of my mom and we talk everyday.

A very scary thing happened to me two weeks ago. I was going to the funeral and it was at the same place as my mom's was and also the same cemetery. I was dreading going to the point where I did not want to go but had to sort of force myself because I wanted and had to be there for my aunt.

The night before the funeral I was lying in bed and all of a sudden I got a picture in my head as clear as day of my mom lieing in the nursing home bed dying. It was if I was right back there. It was so weird. It scared the H_ _ _ _ out of me so bad I thought I was going out of my mind and I was going to have to go to the hospital. I started shaking and crying so hard and had to phone my friend at 1:00 in the morning.

I called the doctor that I see the next morning and he said because of all the complications of her death and all her suffering it was very traumatic to me. He told me that it was a flashback and if I get more they will ease in time.

I have not had another one but I was scared for days after that.

I feel okay right now though. Has this happened to anyone else? And why is this happening to me after nine months of her being gone?


mom - Bev - passed away from PSP January 29/08
Posts: 139
Joined: Wed Jan 16, 2008 3:43 pm

Postby momppsp » Mon Oct 20, 2008 7:03 am

Les: Yes, Yes and Yes. I agree with the doctor. We all have gone through so much with our loved ones and seen things we hoped we would never see that it takes a long time, if ever, to get it out of our heads. Mom passed in January, and I still remember how bad she looked. It supersedes the good times. If this is normal, I hate it.Sometimes I have to flood my mind with memories or pictures of the way it was years ago to bring myself to reality, that she is in a better place. I feel guilty sometimes that I don't do this with my Dad, but, Dad took his passing much easier with acceptance. The strange thing is, I was much closer to Dad, I was his boy (we had 4 girls). I had him wrapped around my finger. Will al these feelings go away? I don't think so. PSP is the cruelest disease and NO ONE should have to go through it. But we have to accept the cards we are dealt and go on.

When I see Mom suffering in my mind, I have to snap myself into reality. Would I want her back here, suffering, crying, chocking. I would love to have her hold me again, but the holds toward the end were of desperation, of being scared, and wanting me to take it all away. My mind says yes, but I know that is not possible. I hold onto her in my heart.

I pray the bad images fade for you.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
Posts: 1170
Joined: Fri Jun 25, 2004 7:33 pm
Location: USA

Postby granny314 » Mon Oct 20, 2008 6:40 pm

Les, I was having flashbacks for quite some time.I noticed that it was mostly at night.They would get me very upset.Now I read a book at night and my mind is usually on that until I fall asleep.It seems to help.
Sue (Husband Ron,age 59,diagnoised 2002 PSP,1999 prknsns)Left this earth Oct.9,2005
Posts: 544
Joined: Sun Jul 13, 2003 12:04 pm
Location: USA

Postby Robin » Mon Oct 20, 2008 6:59 pm

Unfortunately, I re-live snippets of my dad's final struggles every day -- usually at night. Sometimes in the middle of the night when I awaken. This has been going on for over a year. I've now started to turn on the TV, no matter the time of night, and try to forget about things.
Posts: 3844
Joined: Fri Feb 20, 2004 2:32 am
Location: USA - Northern CA

Postby les » Mon Oct 20, 2008 10:52 pm

Thanks all of you guys for sharing. I just never had that happen to me before. It was so vivid and scary. I mean I have memories but not like that.

I will try very hard to think about other things and force myself to think about the good things.

Posts: 139
Joined: Wed Jan 16, 2008 3:43 pm


Postby ruthkri » Wed Oct 22, 2008 12:26 am

Dear Les, I see from the many replies that we are all having the same
experiences. It has been a year and a half since my precious husband
said good-bye I sometimes think I will never stop reliving his leaving us. This past week was especially hard for me when one of our dearest and oldest friends passed away. She lived in another part of the country and when her husband called and told me that the doctors felt that her body had started to shut down and they gave him a time frame of 72 hrs, I spent those 72 hours knowing what he and her children were going through. It seemed that it was all I could think about She was in her early 70's and suffered with Parkinson's and all its complications thing that she be be kept alive.. I still wake up during the night thinking Bud's next to me and maybe that's a good thing. Anyway Les we all handle our grief differently and yet we share many of the same things especially when there was a deep love. Hugs to you, 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
Posts: 514
Joined: Fri Jul 14, 2006 4:59 pm
Location: Minneapolis, Minnesota

Postby Crazy Mary » Wed Oct 22, 2008 11:59 pm

Ruth I feel the same way. I know that Bruce is gone but yet it feels like he is still here with me. I write him in a journal and I find myself talking to his picture or just saying something to him out loud. I know he's not here but yet I feel he is. Sometimes I think if anyone knew I do this that they would put me away.
Oh what the heck,That's why I go by Crazy Mary. I miss him and I feel so lost without him here sometimes. It does help that I have the kids and grandbabies to keep me busy. Maddie still asks sometimes where her PePop is and thats hard. We are sticking with that he went to live with Jesus. At three years old she probably doesn't really understand but when I tell her that she seems satisfied. She has her favorite picture of Bruce and she gets it down and shows it off. Maybe she's more like her Ma than they think. Oh her new thing now is to call me Mama Bear. I have no ideal where that one came from but I'll take it.Bruce would get a kick out of hearing her call me that I know.
Hang in there Les your not alone.
wife of Bruce 54 years old diag.2003 symptoms since 2001. Freed of PSP on Aug. 19th 2008
Crazy Mary
Posts: 1239
Joined: Tue Mar 28, 2006 5:40 am
Location: USA

Postby LRS » Sun Nov 09, 2008 12:33 am

You are surely not alone in this. I believe things will get better for you in time. I am so sorry that you had to relive those final moments. I just praise God that He blessed me in that I cannot remember what mom looked like while she was sick. No matter how hard I try, it will not happen. I can only remember my healthy mom. What a blessing. I pray it always stays that way. I have my times of sadness, tonight is one of them. I always just pray and try to get my mind on other things. And, Mary....I talk out loud to mom too. I find myself doing it often. You hang in there Les, we have all been through something that is almost unimagineable for most. Just get your focus back on the good times and the good memories. You'll be in my prayers.
*Mom, Jean, 72, symptoms of PSP since 9/07, diagnosis of possible PSP 2/08, met her Savior 9/15/08.*
Posts: 254
Joined: Fri Jan 04, 2008 12:57 am
Location: Greensboro, NC

Postby les » Thu Nov 13, 2008 5:47 pm

Hi Lisa:

Thank you for your post and thank you everyone else. I have not been on here for awhile. I have not another episode like that, thank GOD but I had a very very vivid dream of my mom. She was healthy in the dream and she was sitting beside me and we were watching a movie. She looked young and her hair was black like I remember from my teenage years..

That was a nice dream.

Thanks for all your kind and helpful words you guys.

Posts: 139
Joined: Wed Jan 16, 2008 3:43 pm

Postby nanny » Thu Nov 13, 2008 8:08 pm

pop has had PTSD from Viet Nam for 40yrs.
It sounds like PTSD to me. Any death or something that really shakes you up will make the symptoms worse. I've slept many nights with pop holding on to me all night. I didn't have to ask if he dreams because I knew.
My husband was diagnosed August 2008 but he has had symptoms since late 2005
Posts: 39
Joined: Sat Aug 23, 2008 5:59 pm
Location: North Ala

Postby afernando » Wed Nov 10, 2010 7:16 pm

The last two years have been like a nightmare. I almost don’t want to write about what other people could be in for. The good old days were when my mother only had the use of one arm. Or when I had to wait an extra 10 seconds to hear a reply.
There are a few things that still haunt me; mostly the look on my mothers face after she could no longer speak. She looked so unhappy and uncomfortable. Uncomfortable is putting it mildly. To feel apart of the family, she would go with us to the movies. I am sure the screen was mostly blurry but it was one of her few excursions out of the house. She could not talk but a facial grimace or groan would communicate discontent. So on a special occasion with friends and grand kids, the 15 of us went to see "Dragon". So we went.. We moved her.. from the bed, to the wheel chair, lifted her into the car, back to the wheel chair and finally in handicapped space, 15 feet in front of the screen. I sat next to her, and feed her one piece of pop corn every 15 minutes. It was a nice movie. Happily, I glanced at mom when the lights went up. Her eyes were wide open like someone viewing a horror movie. She had sweat all over her forehead. She was in pain. As quickly as I could, I made dash for the car to get her to her only place of comfort: her Tempurpedic bed, so she could rest her body. She had kept quite because she did not want to leave us! That was my mom. She would prefer to be in pain rather than miss being around her family. I can not forget the look on people's faces as I wheeled her out of the theater. People moved out of the way quickly and politely. Most had a look of shock and fright. "What could be wrong with that poor disfigured woman." Yes, poor woman.
And at times when I thought I could not imagine things getting any worse they always did.
She pasted in September 2010. Her last few minutes on this earth were trying to breathe through the phlegm in her lungs as she drowned in her bed: a long gasp to inhale and the sound of someone gargling water as she exhaled. That sound will stay with me for a while too.
I am so relieved it is over. I wish I could grieve my active, smiling, adventuresome mother. But all of that was robbed from her and me. Traveling was replaced by a bed and a TV. Her smile and laugh, was replaced by silence. A woman that did yoga into her 60s, was replaced by someone afraid to walk. I don’t cry because I miss my mother. I missed her a year and half ago, the moment I realized I could not ask her a question anymore. I cry thinking of all pain she went through. [But less pain then otherwise due the angels from hospice and morphine.] I smile knowing it is finally over. Where she is now, she can travel wherever she wants to. Love you mom.
Posts: 3
Joined: Fri Aug 29, 2008 7:52 am
Location: Pepperell, MA

Postby Robin » Wed Nov 10, 2010 8:30 pm


My condolences on the loss of your beloved mother.

You may re-live these bad memories for a long time; it's akin to PTSD. My re-living of these bad memories declined after about 18 months but I'll still have days/nights when that's the only thing on my mind. (A recent visit to a dementia care facility to see someone with PSP triggered lots of these memories.) What has changed for me is that I've gotten better at saying to myself "OK, you've re-lived that for the 100th time already. Let's think about a positive memory now."

Posts: 3844
Joined: Fri Feb 20, 2004 2:32 am
Location: USA - Northern CA

Return to Grief Support

Who is online

Users browsing this forum: No registered users and 1 guest