Treasured moments - Share yours


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Treasured moments - Share yours

Postby eplowman » Sun Oct 09, 2005 4:01 pm

NOTE 1: Broken topic repaired 02/20/2012. Add 46,505 prior views to views listed on the forum page. -- [b]Moderator.

NOTE 2: Positive, inspiring moments with our loved one who has or had PSP are worth sharing. eplowman launched this topic in 2005 to give folks an opportunity to share with all of us those treasured memories. It was begun in another area of the forum but later was moved to this section of the forum. The initial post is below, along with copies of several replies at the former topic site. --Moderator

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All,

Through the worsening haze and hurt of PSP's rampage, our loved one with PSP may bless us unexpectedly with a "precious moment" of communication, whether spoken or unspoken.

I was deeply moved by one at a family birthday celebration two evenings ago. So deeply moved that I created this topic to share it with you, and to invite you to share briefly any special moments you've experienced with =your= loved one. Such encounters remind us that our loved one, though trapped in a broken and failing body, is still the same =person= we knew and loved in better times, and is still reaching out, still trying desperately to keep in touch, still capable of profoundly affecting our hearts and minds.

The celebration was in honor of my grandson's and my birthdays. The pizza was past history, the candles had been blown out, the cake sampled. Two of the grandsons entertained us with selections from their piano and trombone lessons. Everyone sang "Happy Birthday." Wife Rose, disabled and in an advanced stage of PSP, sat perched in her wheelchair, taking it all in.

Then it was time to open gifts and cards. The box from Rose contained two heavy shirts to help keep me warm in the coming winter months. My daughter Beth serves as Rose's confidential secretary, doing the shopping and writing of cards for special occasions. (Rose cannot see or write, but she can tell Beth what to say.) Handwritten at the bottom of her card for me were these words:

"I love you. You are nearly all I have on earth."

It took a couple of seconds for its meaning to sink in. I wanted to hug her, but I lost it; tears were welling up, and I excused myself to go to the lavatory and let them flow. Those final eight words spoke volumes about the losses she had sustained from PSP; almost everything was gone. She =needed= me to be there with her, in whatever lay ahead. Whew. At 74 and 10 years post-quadruple, I prayed that I would be. I wished I were more deserving.

Well, there you have it. One of the most precious and enduring moments for Rose and me in this struggle with PSP. One to be treasured.

What is yours?

ed p.

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<b>Reply from willru602</b>

Posted - 10/02/2005 : 10:59:39 AM
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Ed, I can't pin point a "most precious" moment at this particular time but my husband, Will, has always expressed his affection by thanking me for things that I've done for him, even the smallest of things.

That has not changed but perhaps become more frequent since his illness has become worse. Everytime I fill his 32 oz. cup with water,pull up the covers, attach his bibb, wipe his behind, and all the 100 other small things I do, he always says in his "bungled" words, "thank you."

One of the things I miss most about my guy is when he would come up and grab me with his big strong arms and say, "I love you with all my heart." His arms are still strong because he uses the trapeze bar to pull himself up but his speech of course, is not the same...but every night before I go to bed, I go in to kiss him goodnight and he says, "I love you lots, honey, I love you lots." (not what he normally would say)

No matter what kind of day we've had and believe me..we've had some days that sure tested our faith...but not our love for each other.. Our day always ends with "I love you and I love you lots, honey."

Ru cg to husband Will/66yr./10yr.symp./6yr.dx.

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<b>Reply from Beth</b>

Posted - 10/02/2005 : 1:18:36 PM
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In caring for my mother I had many, but the thing which I miss the most is the bedtime ritual. It was always the same, done even after she no longer got out of bed. Her speech was the first to be affected, so I must say that I was the only one who could understand her words, but this was a very personal time between us anyway only shared on Sundays with her hairdresser. I would always tell her "Good night, sleep well" and she would say the same to me but add on "Thank you for taking care of me." I would always tell her it was my pleasure (We have a Ritz Carleton Hotel not far from here and in their restaurants if you thank a server they never say "You're welcome" or what drives me crazy these days "No problem"... they always say "It's my pleasure". It just feels so good, that I copied them and always said that to Mom) We'd then share our "I love yous" and good night kisses.

In wondering what to get Mom for Christmas one year after this all started, it just came to me. I ordered from LLBean one of their nice bath sheets, in her favorite color, Pink, and had them embroider upon it "The Ritz". It hung over the head of her brass bed announcing to all that she lived at "The Ritz".

Someday when the pain of her death lessens, I'm going to borrow "her" towel!

P.S. Happy Birthday Ed, and thanks for starting this thread.

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<b>Reply from suzy</b>

Posted - 10/02/2005 : 11:10:33 PM
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Ed, this is a very postive topic you've chosen, thank you.

When hubby shoves his eye glasses at me, I know he wants me to wash them. I dislike anything shoved at me. When I hand him his cleaned glasses, he gives me a "thumbs up" that is his way of thanking me. When I refill his glass with whatever fluid he is drinking at the time, he gives me a "thumbs up." I receive many thumbs up during the day, in his way he is thanking me for whatever I do.

Ed, Belated Happy Birthday.

Diana/suzy

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<b>Reply from Stephanieb</b>

Posted - 10/11/2005 : 2:42:10 PM
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I cried again reading this post, and it made me miss our moments with maminka. Whenever we left to go do something, we would say "See you later alligator" and almost to the very end, maminka would reply, in her little croaky voice "In a while crocodile". As time progressed, we would wait longer and longer to hear her sweet answer (but we always waited until she got it out), and what I would give to hear her say it one more time.

Also, my wonderful hubby always gave maminka lots of kisses (even on her feet when he was rubbing them), but she loved the kisses he gave on her lips. Even though her eyes were always covered with her tea bags, she could tell which one of us was coming in, or kissing her. I would creep in quietly, and she would say "Is that you Stephie?". She had a sixth sense about it.

But back to the kisses; when Al came in, she would say "Is that you Al?", and sometimes, no sound came out, but we could read her lips. And then, she would pucker up for a kiss. Even when she was non-resposnive at the very end, her mouth would pucker up for her son-in law. We miss her so!

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ALL: If =you= have had a treasured moment with your PwPSP, please feel free to share.

ed p.
Last edited by eplowman on Thu Aug 23, 2007 4:46 pm, edited 1 time in total.
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Postby patriciaajones@cox.net » Sun Oct 09, 2005 7:08 pm

The <b></b>positive<b></b> occasions are so rare and should be shared.

Jack was never one to express himself emotionaly and as a young wife it bothered me. It bothered me a lot throughout the years. We all want to hear those terms of endearment, to be told we are loved, that we look nice, we cooked a good meal, etc. I often wrote him a poem and tucked it into his lunch pail but he never acknowledged them. I remember once after seeing a particularly 'mushy' movie, I asked him why he never told me I was beautiful. His answer was, "Because you're not". It didn't do much for my self esteem and it left a nasty, chafing burr in our relationship. I quit writing poems.

A few months ago when I was tucking him in, I gave him his usual kiss and hug, told him "Sweet dreams and have a good night". To my great surprise, he said, "Night pretty girl, love you". I almost turned to see who else was in the room with us. I told him I was no longer a 'girl' and certainly not pretty and he told me,(to quote Ru, in his 'bungled words') I would always be his pretty girl. Now, every night he calls me 'pretty girl' and giggles. Fourty-six years ago I would have paid to hear that. It may be the PSP or the Zoloft but I accept it as a long awaited gift.

Thanks for the topic Ed.

Pat
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Postby wally » Wed Oct 12, 2005 11:38 am

I have not been as faithful to the group as when I was in need.

I still have the site on my address and happened to be thinking of my dad. And thinking of you all.

I was remembering when he was getting to the end of his life. He did not have to go into a wheelchair, but he did have trouble walking the last three weeks of his life. We would dance! We would dance to the bed! We would dance to his chair! We would dance to the commode! We would dance! I loved it! Thank you God for memories!

Lori Ann :)
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Postby CLester » Wed Oct 12, 2005 5:43 pm

The time I will never, ever forget is the day 07/18/03) after my husband was given the news of what the illness was, we ( I ) where driving from the zoo and Elvis came onto the radio singing 'Falling in love with you', DML sang every word. I think we where both so relieved to know what was going on. Needless to say that was our genaration, and still enjoy rock and roll. Although, I often cry when by myself.
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Postby tam » Thu Oct 13, 2005 2:47 am

I've mentioned it before, but for me it was the last time Dad and I went to a ballgame. Growing up, I was immersed in baseball and football, but not so much with basketball. But after Dad got really sick he could no longer handle the time involved with Rangers' or Cowboys' games.

So while he still had a little stamina left, we went to a rare Dallas Mavericks day game. It turned out that one of the PR supervisors for the DMs was a student of Mom's when she taught high school, and he got us center court seats high up enough where we had a perfect view of the game. Even though I could tell Dad was getting tired at the start of the fourth quarter, he refused to leave. That day was perfect in every way.

And the Mavs won, BTW.
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Postby Stephanieb » Thu Oct 13, 2005 4:07 pm

Lori Ann, you reminded me of our dance thing too. We would get mom up in a bear hug and "dance" her to the sofa, or the garden swing. One time, Al said "It's time for our waltz, maminko", and my mom replied "No, it's the cha cha cha". So that's what we called transfering her from then on; let's do the cha cha cha!
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Postby Jeanie Kelley » Thu Oct 13, 2005 10:21 pm

Today as we were driving home from Tom's appointment with our GP he said, "I wouldn't trade you for a licorice jellybean." He LOVES licorice jellybeans so I think that was a compliment!!
Not only was the comment sweet but he put it all together in a sentence. WOW
Jeanie, proud wife of Tom
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Postby Pauline in Maine » Sun Oct 16, 2005 5:57 pm

For the first time since last November I got a chance to go with a girlfriend to do a little shopping and have dinner out. I was concerned and hated to leave Greg, even though I know he was in good hands with one of my best friends Carol Ann. I went to his bed, kissed him, and said that I was going with Pat for shopping and dinner, he looked at me and grinned his big old grin. I felt like he was saying, it's about time you got out of the house. It made me feel better about going somewhere when he cannot.

Pauline in Maine
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Postby Patriciawray » Thu Oct 20, 2005 9:13 pm

My Richard, passed away on July 12 of this year after fighting this ugly disease for over 4 years. As everyone knows that near the end there are not many touching moments between the patient and the caregiver. But I do remember from time to time I would sit on the floor right in front of my husband as he sat in his chair. He would stroke my back or my head for a few seconds. That closeness was all we had at the end but it was great!
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Postby granny314 » Fri Oct 21, 2005 10:58 am

Ron and I every night would say,"Goodnight,I love you!" to each other.I can only think of a very few times in 35 years when we were apart and couldnt say it.Even when he could no longer talk when I would say"Goodnight I love you!"He would point to himself then put up two fingers meaning,Me too.Its not quiet been two weeks since he passed away and I still say,"Goodnight I love you!"I know he hears me.
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Postby Moderator » Wed Oct 26, 2005 6:59 pm

I've made this topic a sticky. Feel free to put memories of your loved ones here.
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Postby jz » Wed Oct 26, 2005 9:17 pm

For me it was last year and my mom could still get out partial sentences.

I had taken her and her caregiver to a resort town in Michigan called "Saugatuck". My mom & dad used to take us there when we were kids and when when we were all a family. (my dad passed away when I was 15, in 1968, left mom with 3 young children, 1 whom is blind)...anyway, I slept in the bed with my mom, caregiver on the couch in the living room. It was 4:30am and mom had to go potty. When I gave her a hug to lift her off the bed, she patted my back and began singing "I don't know why I love you like I do, I don't know why I just do"! I was shocked because she hadn't spoken this many words in a couple years. When I said "mom, are you singing to me" and she said "singing to you" and started all over again. I hugged her, cried and told her I loved her more than life itself.

I'll never forget that day as long as I live. Never!!

julie z - chicago,il
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Postby mvetter » Thu Oct 27, 2005 4:14 pm

I just want to tell everyone that have been sharing memories how much I appreciate it. I am a big ol' dufus, I guess, because I get so choked up reading them. I can't imagine the thought of having to count the days with my spouse. I know we all get there one day, but I am amazed how you all keep it together. When my wife got sick in Iraq, I kicked into gear myself but it hasn't been to the extent that you all experience. I knew this was a temporary end or a new beginning, depending on how we looked at it. I wish I could give you all that chance to turn this into a temporary situation.

I hope these stories encourage all of us to stop and remember the little things. It sounds so cliche, but true. I reminded myself of that today. I drop my two girls off at the bus stop and they won't get on the bus until they kiss and hug me. What dad still gets kissed by his 8yo and 6yo daughters in front of the world? It means a lot to me, but I know my days are numbered [:)]. Who knew something so trivial could mean so much to me?

Michael
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Postby jz » Fri Oct 28, 2005 3:36 pm

Tam - this is a wonderful idea. Thanks for looking out for ALL of us!

julie z
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Postby rcbrady » Mon Oct 31, 2005 2:25 pm

I read all the posts and am happy to respond with a few stories of my own. Ed and I have been married for 55 years. We have four loving childred and five grandsons. Ed has not officially been diagnosed with PSP, but I have no doubt that that is what he has been suffering with for many many years. The past five years have been critical. He was declared terminal back in April 2004, that doctors say that he has end stage parkinsons and ignoe my information about PSP.
I am his care giver and I now have two lovely young women that come in twice a day to help me get him up in the morning and down late afternoon. We try to maintain a regular routine regardless of what happends. Ed hasn't been able to speek or eat anything for about two and a half years. We have established hand signels I have been gavage feeding him until last week when we switched to a pump. He had been getting fluid in his lungs and almost died once a week for a while. Ed has always been a loving husband and father but he rarly gave hugs and kisses. Now that he can't speak he holds onto anyone who comes near him. When I give him his pills in the tube he puts his arm around my waist. He is very happy when the girls who work for us bring in their little childred (which I encourage, or when our childred and grand childred visit. I know that Ed is greatfull to be at home, he did stay in a nursing home for three months, while I had an operation, he was not very happy there, even thought they were very good to him. Thank you for giving us the opportunity to share information.
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Postby stitcher_49238 » Mon Oct 31, 2005 9:22 pm

I get so much reassurance from this site you have all helped me know that I am not alone and that means so very much. Keep the positive stories coming. Thanks for sharing. My husband was diagnoised 4 1/2 years ago. May God bless you all. Stitcher
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Postby daddysgirl » Tue Nov 01, 2005 8:23 am

Even though it was probably the most taxing time of my life on my physical and mental being, I treasure the week that was spent with my dad in June 2003 before he went into the nursing home.

In November 2002, my mom's arm was seriously injured in trying to prevent one of my dad's falls. In May 2003, she had surgery to repair the nerves and tendons. When she received the okay from the doctor, she went out of town for a week to regenerate herself ... body, mind and soul. I had taken a week's vacation just in case something happened to my dad's caregiver. I must have been psychic as she had a miscarriage and was not available.

I arrived at my parents house Sunday afternoon and my mom left. My niece was supposed to come and be there for the "watch Daddy everytime he get's up in the night for the bathroom" duty. Well, she wasn't able to make it. As Daddy was up constantly, there was not any "sleep" for the "night watchman".

Monday, I was in the kitchen making something for Daddy for lunch. I turned my head just in time to see him get up out of his chair and fall. He didn't wilt his way down to the floor ... he looked like a tree falling in the forest ... straight down .... HARD. Somehow, he had wedged himself between the chair and end table. It scared the s--t out of me, and he was terrified too. I had the HARDEST time getting him up by myself, but was finally able to.

From that second on, I tried to never be more than a few steps away from him. You all know how sneaky the PWPSP can be. No sooner would I look away, he'd be trying to get up again. Other than several hours on Wednesday when one of my sisters came to relieve me, I was awake for practically the whole week. I would maybe catch little 30 minute to an hour naps in between his nightly "get-ups", but after awhile, you're just too tired to sleep. This was only the beginning of my "growing stronger .. body, mind and soul .. through the journey of PSP".

But, as I said at the beginning of this ... even as hard as it was, I will always treasure this week that I had with my dad before he went into the nursing home. I guess this was a precursor for December 2004. I spent the last night of Daddy's life by his bedside in the hospital, holding his hand or stroking his arm ... I am "daddysgirl" you know.

Thanks for letting me share this memory.
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Postby granny314 » Tue Nov 01, 2005 4:36 pm

On Oct.17th we had Rons funeral.We were a little worried about our two grandsons attending(ages 9&11)but the social worker from Hospice said it would be a good idea as the boys live with us.Everyone was really touched when they got up and told everyone how much they loved their grandpa and all the fun things they did with him.My son and I were totally surprised and moved.It was wonderfull moment.We knew that they are going to be able to handle him being gone and the memories good and hard can be shared.
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Postby ellenstamper » Fri Nov 04, 2005 5:58 am

While I have read many of the posts on this forum, this is the first time I have posted. The sweet stories posted here touched me deeply.

My dear father-in-law, Ed, has been suffering with PSP for almost a decade. My wonderful mother-in-law, Carol, was his only caregiver until suffered a stroke 2 weeks after being diagnosed with pancreatic cancer in late August. Ed and Carol were moved into my sister-in-law's house, which happens to be the house that Carol and Ed lived in until Ed's illness forced them to move about 4 years ago. The two of them were now staying the in the very room they shared for most of their 50 year marriage, although I am positive none of us forsaw the circumstances. They were in hospital beds placed side-by-side, placed as close together as was practical.

One night just as my sister-in-law was going into the bedroom, she witnessed Carol blow a kiss to Ed, and Ed slowly lift his hand to his mouth, then towards his bride of 50 years. Ed hasn't spoken in a couple of years, so this exchange of affection was all the more touching.

Carol passed away on a beautiful autumn day in October, surrounded by her family. Ed was sitting in his lift-chair next to Carol, and when she passed he indicated with an emphatic "thumbs up" that he wanted us to help him stand so he could see his bride. We were even able to help him to sit on the bed next to her for a few minutes. My sister-in-law commented that this was the saddest thing she had ever seen, and I replied "and the sweetest."

Although the PSP has robbed Ed of so much, it did not rob him of being with his beloved wife when she passed.
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Postby nokesl » Fri Nov 04, 2005 6:40 am

Ellen, welcome to the forum.

What a beautiful, touching story, you really bought tears to my eyes.

I am sorry for yours and your families loss and the condition that your fil now has to endure.

I hope that you will find support here.

take care and thank you for posting

Georgie
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Postby daddysgirl » Fri Nov 04, 2005 7:55 am

Ellen ...

What a beautiful "treasure" Carol and Ed had in each other.

My mom saw my dad for the first time at a wedding when she was 9 years old. She went home that day and told her mother that she saw the boy she was going to marry. Well, when Mama wants something, she gets it ... she never dated anyone else. When my parents celebrated their 50th wedding anniversary, they were not able to glide across the dance floor as they had done so many times before. But, for "their" dance, my mom pushed and turned my dad's wheelchair in a small circle around the center of the dance floor.

My dad was in the hospital 4 different times in his last 4 months alive. Everytime he pulled through, we and the doctors shook our heads in disbelief .. he had an incredible will to live. His last day it was evident that this time he would not pull through. Mama had sent me on an errand, so I was not at the hospital. She leaned over Daddy and told him "I've loved you forever and I'll always love you. Honey, please let Jesus take you home. We'll be okay. Peace be with you". She said within a couple of minutes he took a couple of deep breaths and she called to see if one of the nurses could come be with her. Linda, one of Daddy's favorite angels, and my mom were standing by Daddy's bedside holding his hands when he passed. Even though others did not think Daddy knew who was around .. he did, and he left this world knowing that his one true love was by his side.
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Postby suzy » Sat Nov 12, 2005 9:44 pm

I visited hubby in the Rehab Center today, he was "watching" the Ohio State football game, and as usual, I'm not allowed to talk during football games. All of a sudden he grabbed the Alphabet Board and wrote: "I Lvoe Yuy. That was so romantic and warm.

Hey, he still loves me.

Diana/suzy
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Postby Dana » Sun Nov 13, 2005 11:01 pm

Hi there,

Well, there have been many treasured moments during our 42 years of marriage.

The most recent one was in the bathroom today and I cherish it. I was worn out and just put Charles in the wheelchair and he tried to say something to me and I leaned down and he held his arms out and I went into them for a hug that the like I haven't had in years.

We went the extra mile and made it to church today which is a lot of extra work on the old lady. ha I really did need that hug and hope the rest of you get one often.

LoL Dana
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Postby therock » Fri Nov 18, 2005 9:31 am

I have been contemplating posting on this topic for quite some time now. It's 3 1/2 weeks until December 14, almost 1 year without my Gram. This upcoming Thanksgiving weekend will be one year from the time she entered the hospital and we learned her fate and that she would not be coming home. I have so many memories, over 31 years worth.

We used to joke so much. One time my aunt, my mom, my Gram and myself were in a Walmart/Target and my aunt and myself decided to play a joke and have her paged saying it was time for her medication. When we asked the girl to page her, we stated that they didn't let her out very often and we really needed to get her the medication. She was paged and we laughed so hard. My aunt and I would take her shopping and randomly put weird stuff in the cart, and she'd go "Get the hell out of here."

So many times my aunt and I would fool with the answering machine...we'd leave things like, "Wait I can't see ya lemme get my teeth or I can't hear ya lemme get my glasses" for the caller waiting to leave a message. I guess as of right now they are all very memorable, but nothing like the memories from the hospital last year.

Being a sad time we had to keep the laughter going, so we did and it helped. We had a running joke that Gram thought my husband(fiance last year) was one hot man(and indeed he is), so I jokingly said..."Go ahead Dave let Gram grab your ass", Boy I never saw her right hand move that fast until that day. There was her last beer I gave her and wow how she enjoyed it, even it it was by a little sponge to suck on.

On one of her last really concious days my nephew Larry and I were left alone(it was very private and intimate feeling that her 2 favorite grandchildren were with her) with Gram one night(just for a bit) along with a very annoying cousin of my Gram's. Well this women would not shut up, Gram knows that she is near the end, we know it, everyone knows it..so I am sitting on one side holding her hand and my nephew on the other side holding her other hand. The 3 of us keep looking like how do we get her out of the room..my nephew suggest Gram is tired-well that didin't work...after many minutes all the sudden we hear "GET OUT IRENE"...it came from my Gram, she could barely speak by this time, but this was loud and clear! As soon as she walked out of the room the 3 of us busted out laughing. That was basically the last tme she spoke or laughed before her death and I was there to cherish that.

Thank you for sharing your stories and this is really a great topic.
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Postby Stephanieb » Mon Nov 21, 2005 10:49 pm

Hi everyone, thank you all for sharing your stories. I love reading them, though I must say it makes me miss maminka so much. Hope you are well...[:I]
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Postby Lindazharley » Thu Dec 01, 2005 2:15 pm

I must say that is has been over a year(7/6/04) since my beautiful mother gave up her valient struggle with PSP.This is my first time since she passed away that I have read and responded in this forum. All the letters I read bring tears. Every day I thank my mother for being "my mother". This disease has brought my six sisters and one brother much closer together. We cared for Helen every day until the day she left for a better place. She was 76 years young. She was diagnosed about 7 years prior. During all the trials and tribulations she had to go through she never once complained. I hope that I can be 1 tenth the woman she was.

Again, I want to say "thanks mom".
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Postby pearlmckee » Thu Dec 01, 2005 5:36 pm

Linda, I know you miss your mom terribly but are happy that she no linger has to suffer from this terrible disease. Please continue to stop by when you are able. You might like to check out the thread about the bracelets that are available to raise money for PSP if you haven't already.
May God Bless you and your family.
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Postby grannysandim » Fri Dec 02, 2005 1:36 am

I have 2 moments that I will cherish forever.

The day that Les decided not to have a feeding tube my daughter was driving home with our grandson Alex who is 5 and she was crying. Alex said "Mama are you crying"? My daughter said yes, he asked why and she said because grandpa is sick and Alex said "I know that and I'm not crying". Shawn then told him "The kind of sick that grandpa is won't get better". Alex said oh I didn't know that. Later that night Alex was going with his dad to an open gym and one of his dad's 16 year old basketball players was walking towards them - Alex ran up to see him and the boy said "Hi Alex what's up" Alex looked at him and said "My grandpa is going to die" The boy bent down and hugged Alex and told him that is was alright that his grandpa had died but that Alex needed to remember that his grandpa would always be with him in his heart. Alex said he knew that and that Grandpa would be his Guardian Angel.

The other is our granddaughter Shea who is 1 1/2 years old and I were sitting on the couch one night after Les had gone to bed (he always shuts the door to the bedroom) All of the sudden she climbed down from the couch and went to the bedroom door and started fussing then she came and got my hand and pulled me to the door and fussed so I opened the door and she went and stood by the bed and fussed somemore until Les woke up and stuck out his hand - Shea toddled over and gave him five. Then we walked out and I went to shut the door and Shea fussed about it so I left it open - for the next 2 or 3 hours she went in to 'check on' her papa about every 1/2 hour waking him up to give him five. Now when Shea is staying with us he does not close the door and she often goes in to check on him and wake him up.

Sandi
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Postby Pauline in Maine » Mon Dec 05, 2005 12:45 am

Last night I put up a few decorations and a little 3-ft fiber optic Christmas tree. Really didn't feel very festive but hoped that Greg would get a little enjoyment out of it even though he cannot see much.

Today Greg was mostly unresponsive; he mostly mouthed words or faint whispers. He finally wanted to get up at noon. When it became dark enough this evening, I lit candles and the little tree. He sat staring straight ahead. All of a sudden he said, "I am in admiration of the Christmas tree". I grabbed his hand and squeezed it really tight. He stayed up until 7:30 pm, evidently still enjoying the bright lights of Christmas.

You never know when small things will become the happiest memories.

Merry Christmas all.
Pauline
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Postby Jeanie Kelley » Thu Dec 08, 2005 1:42 pm

You'll know I have been a bit cynical lately but yesterday an amazing thing happened.

We usually only eat at restaurants where we are known. You know how it is with spills, coughing, spews, etc. and how people look at our lovies strangely. Well, yesterday after we had finished our mael and I handed my credit card to the young waitress, she said that our bill had been paid for. She said the gentleman at another table had paid for our meal. He was about the age of our son, 40ish.

I got Tom up, put his jacket on him (it is snowing here in North Texas), got his U-Step and walked over to the man. I hugged him and told him that this had never happened before. I told him briefly about PSP and thanked him. I wish I had given him my PSP braclet. He hugged me back and went over and hugged Tom. He then walked us to our van and insisted on lifting the walker into the van. His parting words were, "God bless you both."

So my faith has been renewed in mankind.

Hugs, Jeanie
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Postby Pauline in Maine » Thu Dec 08, 2005 7:14 pm

Jeanie,

Your story reminded me of something that happened to us here in Eustis, Florida, last winter.

A man had holed up in his house with his wife, children, and a gun in a nearby town north of where we live. Police were called and three of them were shot, two died. The day of their funerals there were many sheriff departments and police departments throughout the southeast attending fallen comrades' memorial.

This same day, my husband and I stopped at a local restaurant where at least 10 or 12 officers were also eating before returning to their towns or cities. As usual, I fed Greg and saw that he is all cleaned up in between bites. And knowing me, I probably kissed him too.

When we were about to leave, the waitress said you don't owe anything the officers who were sitting over there paid your bill. I broke out in tears and told the waitress that no one had ever done anything like that for us before and it was such a sweet surprise.

Afterward I wondered about this. From news writeups I knew there was abuse in that family which ended up with the man threatening the lives of everyone. Maybe they thought that this was the way it should be between loving husbands and wives. Or maybe they have a sister or brother also fighting a debilitating disease.

Pauline
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Postby nanasgirl » Thu Dec 22, 2005 7:32 pm

I have read this forum often over the past couple of years, but I have never registered or posted. My grandmother was diagnosed with PSP several years ago after misdiagnosis of Parkinsons. 3 years ago I my mother and I began caring for her full time. In the last year she has lost her speech and her ability to control her body in any way. Still, every day I would think that things were not getting worse. Maybe because she could still communicate on some level I refused to believe that things were as bad as they are. Today her nurse came to examine her after she got a sore that wouldnt heal. She stopped taking food or anything solid two days ago and now cant even swallow Jello or yogurt. They have suggested hospice (at home) and given us a 7-10 day time frame. My heart is breaking in two at the thought of losing her. Today I talked to her about old times and I know she heard me. Please pray for my nana. Her name is Jeri Pacheco and she is 79 years old. Thank you for listening. I dont think anyone who has not seen this devastating disease up close will ever understand.
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Postby granny314 » Thu Dec 22, 2005 9:42 pm

Jane,You and your family are also in my prayers.You're right I think only those of us here can understand.I myself have gone through what you are now only 2 months ago.It takes strenght and courage and knowing a lot of people are praying for you and Jeri.Know that I will be and my family will be also.
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Postby suzy » Thu Dec 29, 2005 10:47 pm

Hubby was walking down the hall at the nursing home with his PT and me walking behind with his wheelchair. All of a sudden his other PT came along and she gave him a big hug and started teasing him, he laughed out loud and the four of us were laughing, one of the nurses at her station started laughing. It was the first time in years that I have heard him laugh out loud. What a wonderful Christmas gift.

Diana/suzy
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Postby DerekClive » Sun Jan 01, 2006 12:22 am

I remember my grandfather gave my mum this pendant thing sort of like a compass that he had for years. He wanted my mother to give it to me after he had asked her to get it engraved with my name on saying "with love, Grandad". It was the most beautiful thing because he never really showed much affection for anyone.

I was honoured by his last gift and it was a gift that he treasured personally. He left me his most precious item.

I shall keep it forever and pass it on to the person whom i love the most when i go.

Amy
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Postby Moderator » Tue Jan 03, 2006 1:50 am

Moved to The Back Porch.
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Postby granny314 » Tue Jan 03, 2006 3:56 am

I start the New Year with mixed emotions.I lost my two best friends in 2005(my mom and my Ron),but neither are suffering anymore(mom cancer,Ron-PSP)I do remember last year on New Years Eve Ron had to stay up until midnight so we could both call my mom and wish her happy New Year.He did stay awake and we called her.Then my son opened the front door,we all put little party hats on and blew our noise makers realized how silly we looked and laughed our heads off.I remember this because it was such a gift because Ron didnt laugh much after his PSP progressed and before he got it he had agreat sense of humor.
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Postby grandma » Tue Jan 03, 2006 8:45 pm

One of my treasured moments came just a few weeks ago, I decided not to call my mom anymore, because it made her so sad, she couldn't say what she wanted to say. I couldn't hurt her that way. So I sent her cards. This was for about a month and a half. Well my husband bugged me, he said you are the closest to your mom you need to call her. I said I can't hurt her like that. He said she misses your calls. So to PROVE MY point, I called that Saturday. I gave him the extention so he could listen. I didn't think I could handle this call. When the staff at the nursing home finally put my mom on the phone, the first thing she said was " OH! I'm SOOOOO Glad YOU! called!" I won't tell you what a smug look my husband had on his face. I'm glad I did call her, it was one of the best calls in a long time.
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Postby nanasgirl » Wed Jan 04, 2006 1:50 am

It seems that I am here all the time now. Since nana got really bad and then finally passed I am remembering all the good things that happened while she was sick. She would lay in her lift chair with our littlest dog (a mini doxie) on her lap and watch tv. Whenever any other dog would come up to her (we have 3 others) her little dog would go crazy and bark, which would make her laugh. It took me a little while to realize that she was luring the other dogs to her chair with snacks in order to see "her" dog attack them in order to protect her. She always wanted to be reassured that she was number one. I thought about that today and laughed out loud.

Jane- grandaughter of Jeri 79yrs old Diagnosed 2003 /symptoms 1997
Left for heaven 1/2/2006
Smiling on me now.
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Postby Mishka » Tue Feb 14, 2006 12:43 pm

Today is the first anniversary of losing Dad. It's been a tough year, but hopefully after today, time will lesson the pain.

My treasured memory is from about 4 years ago when he and I were sitting outside. His speech was beginning to go and the communication between what he wanted to say and getting the words out was beginning to take some time. Anyway, I was asking him about his childhood in Poland and he said to me, "Thank you. You are the only one who has cared to ask me about this". He rarely discussed his life with us (three children), and when we did ask, he would give us some vague reply so we quit asking. I wonder if as he got older he wished he had shared more. I don't know. Somewhere I have a few scribbled notes from that day, and a few pictues of when he was a young boy in Poland, but nothing else. However, I do have that conversation we had, sitting outside under the canopy of Wisteria, in my memory.

Dad passed away from complications of double pneumonia - we chose not to treat him with anitbiotics because we knew at 81, it would have been a futile fight. As hard as it has been last night and today as my mind wanders back to his last few days this time last year, I still feel relief he is no longer suffering all the emotional and physical hurdles of PSP.
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Postby Jeanie Kelley » Tue Feb 14, 2006 6:49 pm

Tom has always bought Valentine cards and gifts for our three children and five grandchildren. We went to Wal-Mart (of course) and HE picked out cards and gifts.
He even tried to sign his name to the cards. It doesn't matter what he has signed they will cherish them. I would love to see their faces when they open their gifts.
We met 50 years ago today on a blind date so Valentine's day has been special to both of us.
Hugs, Jeanie
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Postby Jeanie Kelley » Sat Feb 25, 2006 9:25 pm

Tom and I have been blessed with wonderful friends but today was exceptional.
He has two friends, Eddy and James, since second grade, and these guys share a birthday. Today James' son gave a 70th birthday party for the two guys.
We drove an hour and a half, in the rain, to Dallas and Eddy and his wife drove us to East Texas for the party which was held in their church's reception hall. The hall was filled with more old friends and relatives.
The guys honored Tom throughout the day with praises and pictures and jokes. He had a most wonderful day as they were once again THE THREE STOOGES.
Sorry, I had to stop and cry a moment...
It may have rained all day but his face was pure sunshine.
Hugs, Jeanie
PS- Eddy comes to our house every 6 weeks and spends the day doing "Honey does."
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Postby Heather » Sat Mar 04, 2006 1:54 pm

I have many special memories of my mom while she was battling PSP, but one inparticular is when I finally got pregnant after 6.5 years of trying. I was working at a doctor's office and every now and then I would get a phone call from my mom and there would be a pause and then very slowly she would tell me a tip for when the baby was born. At this point, she was already in a wheelchair and having difficulty with speech, her eyesight and motor skills. She was such a wonderful grandmother to my nephews and I wanted nothing more than for her to be able to hold and rock and play with my daughter, but we knew that this was not going to happen. She wanted to help me so much and when she would think of something, she didn't want to forget so she would have the caregiver or my dad dial the phone and she would eventually get the one sentence message across to me. Then I would hear very softly and breathlessly, "I love you." By that point, tears would be rolling down my face because I knew how important it was to her to get the message across to me and how difficult it was for her to do, but she did it anyway. I remember one of them was "always keep her shoes clean." So now every time I put Skylar's shoes on I take an extra second to check and make sure they are clean and, if need be, I will take the extra moment to wipe them off and think how proud my mom would be.

We all have so many memories of our loved ones and I am so thankful for that. Often times I feel her right here with me or catch a scent that reminds me of her when I was younger and I will stop what I am doing, close my eyes and take it in. For that moment, it feels like she is right here with me and I know she truly is.

God bless you all~
Heather Schultz
(Daughter of Sandy Stern - passed away November 18, 2004)
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Postby Bridget » Mon Mar 06, 2006 12:19 pm

I had a treasured moment with Dad just yesterday at mass. They announced a second collection for missions in Africa and Dad reached for his wallet. (Dad is usually a bit of miser and we used to joke that he squeaked when he walked). He was fumbling through his wallet and his many pictures, receipts, etc were beginning to fall out. I reached over to help him and quietly asked how much he was looking for. He said $1.00. The smallest bill I could find was a $10. The usher was fast approaching so I told him he was going to be generous today. Clear as a bell and loud enough to be heard, he said "Mr. Generous, that's my middle name". I got to giggling and my daughter almost fell out of the pew laughing. It was just one of those moments that no one but us understood but we will always remember and laugh about!
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Postby jh » Tue Mar 07, 2006 12:48 pm

My treasured moment that I would like to share happened 1 year prior to our knowing Dad has PSP.

My Dad was so excited to be bringing us his fishing boat, saved from his cottaging days, waiting for someone in the family to get their own cottage. He and my Mom drove from across the country to deliver it. This in itself is a testament that God wasn't ready for him to go yet - his driving was SCAREY!

Well, he got the boat into the lake, and off he went. My Mom and I were sitting on a park bench, watching. She was telling me right then that she thought maybe Dad has Parkinsons, his walking, etc.

As we were looking, he slowed the boat down ( a little fishing boat), but did not stop it. He WALKED across the seats to the front of the boat - it was still moving!!!! He just grabbed something, and then tottered back across the seats to the motor!!!!

My Dad doesnt swim, but he has been fishing forever, and always wears a lifejacket. Mom and I were freaking out, but she just told me, don't say anything. He is fine, and he is so happy to be on the lake. I kept seeing the scene of him falling overboard, the boat just keeps on going and going.....oh my!

One year later we learned that he had suffered many strokes, plus he has PSP. I am sure we never would have let him enjoy his little wild time on the lake had we known. And for that, I am grateful that he had his time!

Jayme
Aurora, Ontario
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Postby Jeanie Kelley » Tue Mar 21, 2006 9:18 pm

I had the most amazing 69th birthday today. Two of my childhood friends and one husband came to spend the day with me.
One friend lives in Colo. and the other about 2 hours away. The Colo. friend's husband was attending a seminar in Dallas so she was came along to visit.
The "girls" took me out to lunch and shopping. The hubby stayed home wit Tom. They brougt a dozen yellow roses and even dearer to a caregivers heart- three frozen meals. These sweeties cooked for us all last evening. The Colo. buddy made me a "hug" pillow so that I can hug the pillow and know she is giving me a hug.
I'm tearing up as I write this. It was so special. What friends!!
Tom didn't know it was my birthday but that's OK, he loves me and I know that.
We sure created a sweet memory today.
Hugs to all, Jeanie
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Postby suzy » Thu Mar 23, 2006 11:04 pm

Posted - 03/21/2006 : 11:24:17 PM
--------------------------------------------------------------------------------
One day a month the nursing home schedules a trip to Wal-Mart. And you are thinking - big deal. It is/was a HUGE deal.

There were 10 residents and 7 volunteers including myself. The Activity Director drove the bus had loud Gospel music playing, at first I thought "Oh, no." Yet, I began to enjoy it. Oh, I forgot, one of the volunteers drove her pick-up truck behind the bus hauling all the wheel chairs.

When we arrived at Wal-Mart, we ate lunch purchased at their Deli then had 2 hours to shop or do whatever any one wanted.

The volunteers were wonderful, asking the residents what they wanted to eat, buying their food (with the residents' money) taking people to the bathroom.

At the end of the shopping trip everyone lined up, residents and volunteers to get into the bus for the trip back to the nursing home.

It was the most enlightening day of my life.

Hubby held my hand on the bus, this time not squeezing it as he usually does, put his hand on my leg. I put my arm around him, it was as if we were alone, not in his nursing home room.

It was the most romantic time we've had in years.

I want to go to Wal-Mart on the nursing home bus again.
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Postby Crazy Mary » Fri Apr 07, 2006 5:01 pm

Hi, I go by Crazy Mary as that is how I feel most days,trying to get trough this disease with my husband. I've been reading the stories of others and am very touched by them. PSP is such an unforgiving disease that we need to hold on to every good moment we get. They tell me that we are now in the fourth stage of the disease, I'm not sure what this means,but I know we're still fighting everyday and everyday I pray that something good will come from all of this suffering my husband is going through. He decided when he was diagnosed that he didn't want the tubes and things and I will honor his wishes. We're fighting choking his heart and infection every day. Last sunday evening he was running a high fever. I was sponging him and alternating meds to help bring down his fever, while I was sponging him he looked up at me and said to me "You really do love me." It was a really rough night for him he was weak and lately talking has been a job in its self but he was speaking very clear when he said those words to me, and I spoke very clearly in response, "I always will." Today is a good day, if you can call it that. No fever bp is low but not too low pulse is too but he ate and he's been able to watch tv. We had eyelid crutches put in his glasses so he could keep his eyes open. When we first got them the first nite he had his c-pap on and his glasses I told him he looked like an alien. He wanted to see so I got a mirror and he took one look and agreed we both laughed.I know I will remember these times,because they make me smile and there isn't enough of that nowadays.
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Postby Norita » Sat Apr 08, 2006 1:40 am

Hello everyone.

I lost my mum to PSP nearly 4 years ago on mother's day. Wow, I cannot believe it will be 4 years.

I was reading your treasured moments and it brought tears to my eyes. And at the same time it reminded me of the last minutes I spent with my mum and how special it was for me... specially as I did not know I was seeing her for the last time.

My treasured moment was when I was saying goodbye to her at the nursing home. I lived 1400km south of where she lived and I was returning home for 3 weeks and then be back again. I did that often travelling up and down with my girls. They were 5 and 2 at the time and I would stay with my dad and sister whilst I was up there.

AS I was holding her kissing her and explaining that I was leaving but would be returning soon, I pulled up her very dark sunglasses and asked her to please look into my eyes. This was very hard for mum and she had stopped doing this for a long while. But for some reason I really needed her to look into my eyes. I said to her " please look at me mum, I want to tell you something" ... and with all her might she smiled and looked deep into my eyes...and I was able to say "I love you so much mum, I really want you to know this" and she moved her lips saying "me too" (but no noise came out.) Then her eyes wandered off but for those 30 seconds I felt so close and connected with her.

Mum died 11 hrs before I could get a plane out to her 2 weeks after I had left... on mother's day 2002.

Thank you for letting me share this with you, my prayers are with you all.
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Postby grannysandim » Sat Apr 15, 2006 12:29 pm

I know I've posted to this before but something happened last Tuesday that I wanted to share here.

I had a friend come over to fix a couple of things around the house that needed drill use (which I haven't mastered yet) While Rick was fixing things Les, Rick's wife and I were trying to stay out of the way. When Rick went outside to hang up something for me we all followed him. What he was hanging was very close to a nest with a dove in it so Les started flapping his arms all over the place - well needless to say the mama dove went flying and so did a bunch of feathers. So of course I got on his case telling him that was just wrong to scare that mama dove that way - I got in response that "I got caught smile" Then he goes over and starts to sit on the hot tub - Again, I got on him about it telling him he would break it to get off before he fell in....Again that smile. Next he picked up the drill before anyone could stop him and started to drill our deck...Well I lost it and said "Damn Les your worse than a 2 year old" as I grabbed the drill. Well, instead of the "I got caught smile" he laughed with a laughing sound. It was music to my ears and the first time he has made a sound other than gagging and clearing in I can't remember how long. It will forever be a treasured moment.

Sandi
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Postby Crazy Mary » Sat Apr 15, 2006 8:53 pm

Jeanie Kelly, Bruce and I have had the same type of thing happen.We were in our local family restaraunt,we spent alot of time there when the store was open,and Bruce was well. Anyway when we go in now we take a table close to the door and they are really good about accomadating us to Bruce's illness. We hadn't been there for awhile because Bruce wasn't doing so well, and we went in {he loves her cheese cake}. We had finished our lunch and I went to pay and was told that someone had already paid for the meal. When I asked who had bought our meal they just told me it was someone who use to be a customer in our store. They knew I'd never guess as almost everyone who came into our store also came to the restaraunt.People are naturally giving and caring given half the chance. Those who have been through some kind of trauma are those who reach out first. What has really surprised me has been the kids that use to come in the store after school everyday. I didn't figure on them keeping in touch or approaching Bruce when we're out. But they do, they really care, and have told us how much they miss having the store to come to and sharing their lives with us. I knew we would miss them,they taught us alot,and obviously learned some too.
I love reading the posts on this sight,it's emotional but fills the heart.
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Postby Pauline in Maine » Fri Apr 21, 2006 1:48 pm

This is not a heart-wrenching story, but it shows that Greg had no dementia and knew exactly what was going on.

The first respite time I had March 23rd, Greg's cousin came to visit and was gone by the time I returned. After Greg died April 1st, an evening before the funeral, he asked me if the CNA told me what happened the day he was visited. She had not.

He proceeded to tell me that when he came into Greg's room, he pointed his finger at him and said, "You wouldn't be in this shape, if you hadn't eaten so many pepperonis and peanuts!". Greg shook his head NO. Greg had always been teased about eating those. The cousin said they proceeded to communicate pretty well, he could read Greg's lips, and they had a high old time reminiscing about growing up together more like brothers, all the trouble they got into, etc.

When the cousin left, he pointed at Greg and said, "Now, you stay away from peanuts and pepperoni". Greg slowly brought his right hand out from under the sheet and flipped him "the bird".

This cousin has shared so much of Greg's life, it is really great to hear all their mishaps and good times.

Pauline in Maine
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Postby Crazy Mary » Mon May 08, 2006 8:08 pm

It's me again Crasy mary, we've had such a special day today I just had to share. My husband Bruce played guitar for years he was in several bands music was and always will be a love of his. After he became ill he played less and less,when his friend he played with quit coming he quit playing. I would coax him and sometimes he would play for a few minutes but always he would criticcize himself. Even with reassurance he wouldn't play.Yesterday Pastor Roy called and said he was coming by today and was bringing a friend. I didn't think anything of it really. Anyway today he gets here and his friend gets out of the car and he's holding a guitar case. The mans name was Chris and he had served in the Navy like Bruce. How much better could this be. They came in and we got Bruce set up where he could hold his guitar and play some I made a pot of coffee for them made sure Bruce was okay and in a few minutes was told I wasn't needed to go do something. Bruce had a look of such happiness on his face,finally someone to play with. How much better could this be. I did leave for about an hour and a half. When I returned he was tired but still playing. He doesn't hold the guitar the way he use to he doesn't get the words all out and hits the wrong notes at times but they all ignored that and he was happy. I couldn't have asked for more from this day. After they left and me thanking them for doing this for him he was wore out but it was a happy tired,no it was a wonderful tired!!!!!!!!!!!!
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Postby ddmay01 » Mon Jul 24, 2006 5:36 pm

There was this one particular moment where I was tucking Naomi to bed, and on instinct I kissed her forehead and said goodnight. I was turning to leave when she grabbed my arm and said "Thank you so much for being here and helping me, love you." I couldn't help the tears from flowing (and neither could she), I gave her a big hug and told her that I love her too. Little moments like these are what I treasure the most.
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Postby marmee4 » Wed Jul 26, 2006 11:44 am

We have a 7 month old grand daughter who lives with us - she is a joy and a delight during this time, and my husband thinks she is the living END!!! She is named Daisy, for his mother, too. Every morning, my daughter brings her downstairs to us, and we get to spend an enjoyable time with Miss Daisy - feeding her breakfast with us - and I think watching the two of them together is fantastic. She will look over at him from her highchair, and flash the most brillian smile - and wait patiently for him to look up and return the smile. She dearly loves her granddaddy, and he adores her. I was especially touched this morning, when he leaned way over the bed where I was changing her diaper, and gave her a couple of smoochey kisses on her sweet-smelling head! It's wonderful that there can be good in the midst of bad, right?
God is good, all the time.

Enjoy every moment!
Nan
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Postby meltaylor » Thu Aug 10, 2006 5:50 am

My dad passed away from PSP Oct.2004 and this is the first time I've ever seen this forum. It truly brings tears to my eyes to read everyones little stories as we have all experienced so much alike in our loved ones suffering. I introduced to my dad when he ended up in the hospital for the first time in his life with a bladder infection and ended up staying at the hospital for 3 weeks and thats when his speech ceased. He laid there with a roommate and having to hear a loud TV from across the hall, think of what was happening to him etc., I brought into him my portable CD player and stopped at Borders to buy him a couple of CD's. I play one of those CD's alot today as I never knew what he was listening to that he so much enjoyed as I knew when he closed his eyes as he listened. I was not familiar with the artist, Patty Griffin, 1000 kisses, she plays alot of guitar and has a beautiful voice. Her first song I know how much my dad could relate to as someone was singing about what he felt inside. Big dark clouds, not knowing when to give up the fight, holding on underneath this shroud, wanting another chance to live. And I did not know how much this related to my dad until I took the CD with me after he died and how I cried so many times as I listened to it and even to this day. I loved combing his hair, and rubbing his legs to get the muscles to relax so his legs could straighten out otherwise he was left with them bent. I remember before it progressed so much, and I would go take care of him and put him to bed for a nap, and tucked his pillow under his stiff neck and he I always had to assure him "we are a team right?" He would always reply, "right and don't you forget it". And then one day, he looked at me and said " you take care of me better than anyone else". The times I treasure are so many such close times with my dad and I treasure the final hours when I put him in his pajama bottoms, combed his hair, washed his face and played a CD from Lyndsey Lloyd, Christian singer, "come and see the glory of the Lord". My dad cried 3 tears with his eyes closed and in his very final minutes/hours. And he passed away listening to that same song only 2 hours later. I treasure the love for my dad. Sincerely, Mel
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Postby bert » Wed Aug 30, 2006 5:43 am

Tell me Stephanieb, what were the teabags doing on her face?
I suppose I uoght to be ashamed: used to say to my wife after dinner
"Well, I got rid of this for you"[ I did on occasion say; "that was nice!" Greetings bert.
bert
 
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Postby Queen Upmateedle » Mon Sep 11, 2006 12:30 am

Roy and I hold hands. He was never one to hold hands, and I really wanted to. He was in the Air Force for a career; that may have had something to do with his reluctance to hold hands. But now that he has PSP, we very often hold hands as he moves from place to place (with me steadying him), and I love it.[:)]
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Postby Julie » Wed Sep 13, 2006 11:54 am

Hi all
My treasured moment in the past few weeks is when my dad had been in hospital for 2 days and been asleep for the whole time. On day 3 he was chatty and did his best to communicate with his visitors. As usual, I'd been chatting to him and he said "Give us a kiss", which I of course did, then he said the same to my mum. This was a fabulous moment as my parents were never particularly affectionate to one another but he always insisted as kids that I kiss him goodnight. I am still not the most demonstrative person but I never batted an eyelid kissing my dad, even if just on the head as I passed him.
Im so glad he actually asked for a kiss and tried his best to smile.
Rest in peace Dad, I love you.
Julie
 
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Postby Crazy Mary » Thu Sep 14, 2006 12:22 am

Hi All, I finally got Bruce to POW WOW. We went to Cahokia Mounds on Saturday. We saw some old friends that we haven't seen for quite awhile. My oldest daughter and youngest granddaughter went with us. The baby is only 9 months. Everyone of course was making over her and Bruce. Of course we couldn't leave without Bruce having some fry bread and meat pies.
He seemed to enjoy himself,and said he really missed going out and setting up. I do also,we did it for a long time,we had made alot of good friends. The baby made a haul as all little ones do. Bruce was happy to have his little Frog Nose with him.
I know it was tiring for Bruce but I'm glad we were able to go,it was good for both of us.
I have to say though that wheel chairs just are not easy to manuever on dirt,grass,or gravel. I have even tried the heavy duty chair that hospice brought out,it was even harder as it was heavier.
All in all it was a great day. If any of you are close to areas where they have Pow Wows I really recomend going, the people are great the music is soothing and it's a very relaxed enviroment. Bruce loves the drum and flute and we have cd's he listens to almost everyday.
Well I've gone on long enough.
Crazy Mary
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Postby Jeanie Kelley » Sun Sep 24, 2006 5:03 pm

Being a proud grandparent may I share an experience we had on Friday night?

Our third grandson, Kyle, is 16 years old and had what I called a "disrespectful" summer.

He is a junior in high school and plays center on the varsity team.
Tom LOVES sports and especially loves to see his grandchildren play. We follwed his baseball team all over in the spring and now go to as many of his football games as possible which is somewaht of an ordeal since Tom is in a wheelcahir when out of the house (walker in the house). The football stadium has a handicap section which sits at the fence line very close to the field.

When his team scores a touchdown the cheerleaders throw little footballs into the stands. Last Friday night after the first touchdown a cheerleader came up to our section and handed a football to Tom saying, "Kyle said to give you the first ball." WOW!

Also, after each ganme the players meet the coaches in the center of the field and have an inspiration talk. After that the players meet their fans, usually girlfiends. Kyle immediate comes to his grandad and tells him he is glad that he came to see him play.

I'm always proud of all 5 gandchildren but I have been especially proud of this young man and the way he has matured this school year.

Thanks for letting me share.
Hugs, Jeanie
Jeanie Kelley
 
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Postby Jeanie Kelley » Wed Jan 17, 2007 10:38 pm

I thought that bringing in a hospital bed would be terrible but now I have a treasured time that I will remeber forever.

We put the hospital bed right next to our bed so that we can touch each other. Tom goes to sleep each night holding my hand. WOW, as long as I live I will treasure this time we spend together.
Jeanie
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Postby Shylady » Tue Mar 06, 2007 3:01 pm

Having just lost Mom on feb.26,2007 at this time I must say they are all treasured moments for me but one that seems to continually stick out is a time when I sat and wrote a poem to my mom(I enjoy writting very much) I had finally gown up and looked back at all I had put my mom thru, which wasnt a happy thing for me to come to terms with as I am not proud of the way my early teenage years played out and by all means not proud of anything I put my mother through during that time.Mom not being the mushy gushy kinda person I decided to keep this poem to myself until one Mother's Day when I had presented her with the book that it had been published in.Too my surprise when Mom read the poem she cried,something that didnt come very easy for her, she wasnt an emotional person in any sense and for the most part kept things to herself.Ill forever treasure the tears my mom shed over the way I truely feel about her as that was a once in a life time event.Ill always cherish the person my mom was and all that she stood for and the ways she made me a stronger individual. heres the poem.......
Mother
Mom,you've always been here every step of the way,
Guiding me through life,by my side every day.
Our ups and downs...we have had,
whether being happy,upset or mad,
You never turned and walked away,
never once....
never through the horrible things i would do and say.
HELL..i know i may have made it to be,
but you stayed strong and loved me.
Compasssion as i have for you,i will never another,
You're everything that makes a real woman and mother.
Mom. I love you!!


April Nicole Irons
Copyright ©2000 April Nicole Irons
Shylady
 
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Postby miv » Tue Mar 27, 2007 8:58 pm

Thank you all of posting your memories. I have been reading them and thinking about my Mom. Although there was a lot of pain and suffering, I have a lot of good memories. Mom had a great sense of humor and laughed almost every day. We knew she was having a bad day when we couldn't get her to laugh.

One of my favorites times was taking my Mom to the bathroom. When we were still able to take her to the bathroom using the Sarita lift, this was the only time she was truly upright. One week when I was visiting and had Mom in the bathroom cleaning her up, Dad commented that I had been taking Mom all week and that he should take a turn. I told him I didn't mind because this was the only time I could get my arms right around Mom's waist and give her a good standing up hug. Mom smiled and we enjoyed some very good standing up hugs in the bathroom. Even after she was bedridden, I would finagle my arms underneath and around her for the not so standing up hug. Mom's smile and giggle were all the words I needed.

Happy Birthday, Mom. I am so glad you were born.
miv
 
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Postby JoshnMarkHamblinsMoM » Tue Jun 19, 2007 6:30 pm

My Momma didn't have PSP so far as I know, however, she did have one stroke after another and they called in Hospice. Of course, she had taken care of all the paperwork and did not want to be kept alive on machines, nor did she want a feeding tube. She spent two years in a wheelchair and being a diabetic with high blood pressure, she suffered so very much. When she could no longer feed herself or swallow she went downhill. They called work and I headed up to St. Louis, MO...I walked in the room and they had her on her side facing the window. Of course I go straight to her, her eyes were closed and she wasn't breathing very well. I kissed her forehead and said, "Momma I'm here, it's Beverly". At that one precious moment in time she opened her eyes for the first time that day and looked at me. That was the last time I saw those precious little blue eyes open in what I felt was recognition of me. I never hesitated to do anything for her no matter what it was because my sister had a weak stomach and couldn't manage so when I did get to go home I helped all that I could. That night my brother, his wife and daughter had agreed to stay with her until I could get a shower and change for the night to sit with her and they left 20 minutes before I got back to the nursing home and she had passed away, alone. She wasn't alone though, even though she didn't have any of us physically there. I smile when I think of her in Heaven sitting by my Dad who died in 1973 prior to my senior year and she never loved another. She missed him terribly, he was a good man. Dad died with a Coronary Occlusion due to his Chronic Lymphatic Leukemia he fought for two years. You see, my Mom and Dad were extra special because they adopted me when I was 9 months old after my biological mother passed away with cancer. My Aunt & Uncle became the only parents I ever knew. I miss my Momma, but she's not suffering anymore and starving, she is at peace. Sorry to rattle like this but that was my precious moment, her opening her eyes to acknowledge me, knowing my touch and my voice. She was one precious lady, known to many family members as Daisy, Aunt Daisy, etc.
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Postby marmee4 » Mon Jun 25, 2007 1:02 pm

I think having a good sense of humor is the best medicine for dealing with some of the difficult aspects of PSP. Yesterday, Eddie and I were discussing an abandoned old farm, and I asked him who used to live there. I thought he answered, "Atlantic Taylor". I repeated that and said, "What kind of name is that?" He laughed SO hard, and then really tried to enunciate and say, "Lee Dick Taylor". I asked him what kind of mother would name her kid Lee Dick???? We laughed SO much. I told him I'd just call that guy Atlantic from now on!!! It was great to share a laugh over something silly!
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Postby Jeanie Kelley » Sun Jul 08, 2007 5:54 pm

About two weeks before Tom went to the Lord our oldest daughter was here watching the Rangers play. They are both great fans and loved to watch the games together. The tv was ONLY tuned to ballgames in the living room where we had his hospital bed.
Anyway, he asked her to help him get into his wheelchair (I don't know how she did this by herself, but she did.}
He started moving the wheels by himself and she asked him where he was going. He replied, "To get your momma." She wheeled him into me. I was watching something else in the bedroom as for me watching baseball is kin to watching paint dry.
I asked him what he wanted and he told me to come and watch the game. I replied, "OK, but do I have to root for the Rangers?" He said in a very clear voice, "IT WOULD BE ADVISABLE."
I imagine in his job there were many times when he had to say that to his employees.
Our children and I have tentatively picked out a headstone and our middle daughter will be here in two weeks and we will decide how we want it inscribed. They insist that in small print we have "It would be advisable."

I love and appreciate each of you so much.

I went to Sunday School today and our teacher worked in Tom's life. She asked the class what words could be used to describe him. I remember: brilliant, loyal, caring and loving. WOW!
Then friends from Colorado who had come for the funeral came back through after visiting relatives and went to church service with me.
I was dreading being in the sanctuary again after Tuesday's service but instead it just reaffirmed by belief that he is in a better place.

Hugs, Jeanie
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Postby Jeanie Kelley » Sun Jul 29, 2007 7:40 pm

Well, here I go again.
Tom got his angel wings one month ago today. Friends knew it would be a bad day for me so they came to drive me to Sunday School and church.
Today was the first day I had gone back to singing in the choir. After our first song an usher came and whispered to me, "There are two young men here to see you." I got up and walked to the back of the church and two of our grandsons where there. They too knew it would be an emotional day. One grandson is 22 and a college junior the other is 17 and a high school senior.

I couldn't believe that they would be so caring.

We went out to eat after church. Since they are such big boys I almost had to float a loan to pay for their meal.

A sad day turned into a comforting day.

Hugs, Jeanie
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Postby 4bertyhon » Thu Aug 23, 2007 3:39 pm

Jeanie,
I have only been posting on the otherside until last night. I am so moved by what I am finding. I have been hoping that the forum would have a place for those of us who are "left behind". I love these memory posts. Bert has only been gone since May 6th, so I know how your heart is aching. I also count days and occasions. Right after we lost Bert we had father's day, and two weeks later our wedding anniversary. It is so hard right now.
I hope that the next time Donna comes down here from Canada that you will be able to arrange things so that we can all spend time together.
Keeping you in my prayers.
Susie
My Sweet Bert I miss you so. Diagnosed June 2005 after years of symptoms. Left to be with The Lord May 6, 2007.
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precious moments

Postby ruthkri » Thu Aug 23, 2007 4:35 pm

Dear Ed, Thank you for the post on treasured moments. Reading everyone else's memories is so heartwarming beause with each I recall something similar. It feels good to remember those short memories, pursing the lips to be kissed, reaching out, mouthing the words to songs though no sound would come , and the dancing. Bud's caregiver danced with him every single day. The "I love you" every night even though the response might be a grunt. It all comes back and Ed, thank you again. May non of us ever forget we share similar memories. Fondly, 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 Debs08 » Wed Sep 26, 2007 8:17 pm

I have read some of your stories and they have brought tears to my eyes. But my family and I love to share the fun things that mom does. The things that make us laugh are the things that keep our family going, like this one. Every week my aunts go to my mom's home to play cards. My mom looks forward to their visit every week. Mind you they each have a big burden that they carry. One aunt has progressive MS, the other has a bad heart condition and the last one has a husband dying of pancreatic cancer. I think they do it for themselves, as well as mom. Recently, after a hospital stay mom was put into a short term rehab with a neck flexed forward, chin to chest. She couldn't look at us, we could barely hear what she said or even watch tv. When she found at she was getting ready to be released, when my aunts came to visit, she turned to them and audibly said "GET THE CARDS READY" I think I can play. When my aunts told us this we all laughed. This is how we know no matter what she's still in there and isn't giving up.
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treasured moments

Postby ruthkri » Wed Sep 26, 2007 10:33 pm

Dear Ed, Someone recently posted on this site and when checking I re-read many of the postings including my own written last year. I was a wonderful memory for me and also reading others and their treasured moments. We MUST never forget. Thank you so much for starting this thread. Ruth P.S. How is Rose doing and how are you?
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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Special Memory

Postby dianeokie » Mon Jan 07, 2008 9:35 pm

Mom has had PSP for several years, diagnosed for about 4, but previous diagnosis of PD (probably for 6 years, symptoms for about 11). My oldest son was married in Houston over Thanksgiving. Mom lives in Oklahoma, we live in Georgia. We drove through OK, had Thanksgiving there and took Mom with us to Houston. She has lots of complications of PSP. My three children, including son in the Army from Alaska (and wife) were there, my nephew from Kansas City was there, but most special was my niece, who none of us have seen in the past 18 years (long story) were there. The sweetest thing of all was reintroducing my mom to my niece after 18 years. Tears in my eyes. Glad she got to see her (could be the only time before she's gone). We had pictures made of the family with the bride and groom. How wonderful that all her grandchildren were there with her. Likely not to happen again, seeing that my son will likely be in Iraq before years' end.
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Precious memories....

Postby Staci » Mon Mar 03, 2008 1:00 pm

I have so many precious memories of my dad. Now that he is gone, I look back & see things in a different way & I realize how brave he was. He never wanted to be a burden & had so much tenacity it was amazing to me.
One of the most precious memories I have is the day before he died. I was sitting at his bedside as I had done for the past 2 days and he reached up & pulled me down to him & I gave him a big hug. Now when I tell you this, remember that this is a man who could not speak for the last 8 months. He gave me a huge tight hug & whispered into my ear as plain as day "Staci Lee I Love You". He always always called me by my first & middle name. I feel so blessed to have had a father who was so caring & loving. I never once had to wonder if I was loved or how much. I hope to pass that same blessing onto my darling daughter, Alexa, 13 months old.
Loving Daughter of Gary - received his wings Jan. 22, 2008
Staci
 
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Postby ckiefer » Mon May 19, 2008 12:37 am

It's been about 3 years now since I have received a card or gift from my guy. He doesn't drive, go shopping, write, read, etc. Today, however, I got the best gift of all!
While sitting at the dinner table I gave my guy a tablet of paper and a pen so he could practice his signature. To my surprise this is what he wrote:
"You are the apple of my eye. I love you." He got a huge hug and kiss for this one. I will treasure this piece of paper the rest of my life.....
Diagnosis of PSP November 9, 2007
Age at diagnosis 59
ckiefer
 
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treasured moments

Postby ruthkri » Mon May 19, 2008 9:53 am

Hi, You put a smile on my face. Thanks for sharing Hugs Ruth Kri
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

A Simple Game

Postby Droidsalad » Wed Nov 26, 2008 6:52 pm

As I've read through all these memories I've been touched by all the moments. My mother is currently in the final stages of her battle with this terrible illness (we've been told we probably have about 6-8 weeks) and there have been a lot of beautiful moments for us along the way. The most recent was two weeks ago when my mother actually had enough strength in her hand to play Crocanoe (sorry about the spelling, I don't have my dictionary handy) with my 5 year old son. She was not able to pick up the pieces but was able to "flick" them with her fingers when they were placed in front of her.
I sat there in the nursing home just watching as my son placed each piece for Grandma and she flicked them to the centre. The two of them just had a great time together and my son laughed a lot. Anyway... it was a beautiful picture to behold... just the two of them across a table. Laughing and playing just like a grandmother and grandson should.
Priceless!
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Postby Crazy Mary » Tue Mar 03, 2009 3:37 am

I and one of the kids that went to school with my girls have been painting on the house{I think I've cod lately}. Anyway today he got me talking about when Bruce and I first met and how we finally started dating. It was so long ago but yet it seems like yesterday.
Our first Valentine's day amounted to him attending a dance with a friend of mine at the VFW,while I was working tending bar. I was actually jealous of her {not usually my thing} but from the moment I first saw him I fell for him. I didn't know it at the time but the feeling was mutual and there was a reason he kept coming up to the bar and ordering for everyone else,.
He was the best looking man in the place and he was so sweet and polite on top of it. It wasn't long before we were dating. But I was the reason it took a little while. I was afraid he was actually dating someone else and I didn't want to get mixed up in something like that. My friend actually came to me and let me know that they were only friends and that we should step it up. Now that's a wonderful friend you know.
We had such a wonderful time together I guess I just thought it would last forever. I miss him so much everyday thank God for the memories and the time we did have. I wouldn't have traded it for anything in the world.
Mary
wife of Bruce 54 years old diag.2003 symptoms since 2001. Freed of PSP on Aug. 19th 2008
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Postby pwruth » Sun Apr 19, 2009 10:38 am

A couple of nights before he died my Dad Ron was in hospital and i was staying through to help him eat a little of his dinner. My 2 year old daughter had gone home to mum's to wait for me there so Dad and i were alone.We had some dinner, a swish in the mouth with some much loved but now forbidden gingerale, went on to our toothbrushing routine, got him all rinsed and mouth swabbed with mouth ulcer wash and settled down to our best comfortable possie for the night, A David Attenborough tiger show came on tv, He got me to call mum at home to tell her the tigers were on and he loved her very much,and he needed her every night.I was sitting ther holding his arm with my head on his shoulder thinking how could i bear to leave and go home to organise my family when my dad pulled one of my hands right up close to his mouth and gave me the sweetest princess kiss,,,It was such a special moment because we had been giving ,not recieving much of the affection in the last few months. I am a lucky girl to have such a sweet goodnight kiss to treasure from a man who always made me feel like a princess from the time i was really small, Now I am crying because his sweet lips are gone and he can never pick me up from falls ever again. We loved him and took care of him throughout the tough,sad and sometimes funny times of living with PSP but he was our guide and noone will ever fill his shoes, Thank you dad For our loving family but especially for my special kiss I will nener forget it or you xxxxxKelli
Daughter of Ron, diagnosed PSP Feb 2007,
passed away 31/3/09
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Re: Treasured moments - Share yours

Postby momshar » Sat Jan 04, 2014 5:43 pm

My husband was dx in December of 2007, slow progress but the last year he has declined rapidly. He was a very independent, strong robust, loving guy, who just loved life. He had declined to the point that I was not sure he would make this Christmas, but he has. Our hospice nurse suggested patches to help the drooling, we still have that problem but he is again talking, alert most of the time, moving around the house in the wheelchair, trying to feed himself and part of life again. My special moment is he asked to go to Walmart, hard for us now, so I asked our caregiver to give us an extra hour one Saturday afternoon, while we went for whatever? Finally we figured out together he wanted to shop for a Christmas present for me. So with John's help they went shopping. On Christmas day, we opened presents and my husband kept pointing to the tree. A small wrapped box was hidden in the tree. I had not noticed it in the previous days, but when I opened it. it was a small heart with this saying on the box "We hold every moment, every memory in our hearts". I cried and cried because I realized he does know he is going to leave me soon, but he knows I will always have him in my heart. He tells me every night I love you a bush and peck and a hug around the neck, my reply is I love you to the moon and back, until my last breath. We choose to embrace the special moments and just get through together one day at a time. We count our blessings for the people that have come in to our lives, to help us through this ordeal.

Please don't concentrate on what is going to happen but enjoy what you do have.

Shar
_______________________________

Thank you, Shar. A wonderful, inspiring post. I hope MANY couples whose mate has PSP will read it and be blessed by it, as I was. -- Moderator
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Re: Treasured moments - Share yours

Postby marmee4 » Mon Jan 05, 2015 4:43 pm

I have been away from this Forum for quite a while, yet today am drawn to it, perhaps to share a treasured moment. Certainly it is true that we hold many moments as treasures in our hearts, and each of those moments make up the fabric of our days, weeks, months, eventually our lives. My precious husband died Nov. 6, 2009, after his bravely-fought struggle with PSP, diagnosed "for sure" in the spring of 2005. Many moments stand out, particularly the last day "movie" that continually plays in my mind, and that last hour that was so poignant. As I held him, he with his eyes closed now, and kissed him from time to time, saying,"pucker up, buttercup," he would attempt a smile, and every time, he would pucker up his lips for the expected kiss - until 5:50 p.m. when he no longer responded. Ten minutes later, he breathed his last earthly breath. The "moment" passed, and I reached for the oxygen tubes and turned off the machine. Yet another amazing moment was about to occur. As the family streamed into the room, and my daughters and their husbands, family and friends, gathered around his bed, our 4-month-old granddaughter, held in her father's arms, began looking all around the ceiling, laughing every way she turned, as if following someone's laughing face. She laughed so loudly,and turned so quickly in her dad's arms, we were stunned. Her mother, not realizing where the laughter was coming from, asked that whoever was laughing should stop! But the little one continued and as her gaze swept the room, another daughter, our pastor and his wife, and I felt a swish of air that seemed to match where she was looking, until her head turned toward the ceiling again and up and away out of the room - exactly where the air movement we felt had flowed. I glanced at the daughter kneeling beside my chair, and in the same moment, we spoke. She said, "rain." I said, "fresh flowers." We cannot explain that moment, but I do believe it was a gift from God, as our dear Eddie (husband,father, grandfather, brother, uncle, friend)took the hand of Jesus and flew to heaven. My hope for all reading this is that you will find and keep your faith strong, and rest in the assurance of eternal life for all who call upon the name of Jesus. Be blessed. And may 2015 bring you God's peace. Nancy Vaughan
Nan

Husband, Eddie, age 66, diagnosed in March, 2005, symptoms since 2000; was escorted by a host of angels into the loving arms of Jesus on Friday, November 6, 2009,at 6 p.m., surrounded by his loving wife, childen, and extended family.
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