The struggle is over, the fight was diffic... - PSP Association

PSP Association

9,232 members11,334 posts

The struggle is over, the fight was difficult the warrior strong.

jimandsharynp profile image
62 Replies

My heart is broken. My dear wife Sharyn passed on to a much better place at 8:52pm yesterday. After hours of difficult breathing her breathing returned to almost normal and then within two hours stopped. She was a fighter to the very end never complaining once during her battle with the disease and never asking “why me?” Her two sons and I were at her side as she passed to heaven.

Sharyn was a most compassionate, loving, caring person, my friend, lover, and soul mate. I will miss her greatly. As I tell all my PSP forum friends who lose their loved one to this terrible disease “Your caregiving days are not over. Now you need to care for yourself”. I will do exactly that. Sharyn would want it that way. Thanks to all the family and friends who were kind and caring to Sharyn and I. I don’t know how we would have made it without your prayers and support.

It was Sharyn’s desire to have her brain tissue donated to Mayo Clinic through the CurePSP organization. They study the disease and will also confirm her diagnosis. Due to disease similarities between diseases a positive diagnosis cannot happen without a study of the brain. It is our hope that Sharyn’s tissue will help advance the cause toward a cure for PSP. Sharyn also wished to be cremated.

I will plan two memorial services for Sharyn. The first will be here in Florida in the months ahead. The second will be in New Jersey on her birthday, August 16th. She will be buried in the Ford family plot in New Jersey where many other family members have been placed. If you want to help please send a donation the CurePSP in Sharyn’s name. Their web site is CurePSP.org.

Thanks again and please keep me in your thoughts and prayers in the days ahead. I have a great support group of family and friends to care for me and to help me along.

Jim

Written by
jimandsharynp profile image
jimandsharynp
To view profiles and participate in discussions please or .
62 Replies
NannaB profile image
NannaB

Dear Jim, I'm so sorry to hear this and no words will make you feel better at this sad time. I thank God that Sharyn passed peacefully to be with Him and her family were there at the time.

You are definitely in my prayers as are the other carers and families mourning the recent loss of their loved ones who suffered from PSP but are suffering no more. Many seem to have passed during the last few weeks.

I thank you Jim for all your blogs, advice, thoughts etc. They have been very special to me and I am sure, many others.

May our Father in Heaven grant you and your family His special peace.

As you said Jim, take care of you now.

Nanna B

jimandsharynp profile image
jimandsharynp in reply to NannaB

Nanna, Thanks. I'll continue on the forum and leading the PSP support group I started here in Central Florida.

Dear Jim

I just cannot find words to express how sorry I am to hear that Sharyn has passed away. We often compared our situations and yet Sharyn seems to have gone so soon. She's now at peace, and I pray you and your family will also find peace through your faith that she is in a far better place. Take care my friend, and when the time seems right, please continue to drop in on this forum and help us with your wisdom and experience.

May God's enabling be with you.

Tony.

jimandsharynp profile image
jimandsharynp in reply to

Strelley, Thanks to you for always being there for Sharyn and I with your wisdom and support. I will stay on the site and help others as much as I can. Jimbo

SharonAB profile image
SharonAB

Thank you Sharyn

Your life gave us so much to value and treasure, such strength of character

Thank you Jim for sharing

Alana and Chloe

xxx

dorothy-thompson profile image
dorothy-thompson

Dear Jim

I can only echo the words and sentiments of us all at this very sad time for you and your family. Over my time on this blog I have always looked for your comments and suggestions because you have never failed to help keep my spirits up.

I understand what you say about Sharyn never complaining about her condition, Harry is exactly the same. In spite of what I may say at times, I do not know how he bears it all sometimes. In my darker moments it makes me feel very humble.

Please take care of yourself Jim and may your god go with you.

With much love

Dorothy

jimandsharynp profile image
jimandsharynp in reply to dorothy-thompson

Dorothy, Thanks. Good that Harry has the same mindset as my Sharyn had. Never asking "Why me?" and looking forward. I only hope I am as strong as Harry and Sharyn when the time comes.

Jimbo

Sharon637 profile image
Sharon637

Dear Jim

I am so sorry for the sad loss of your brave wife, who fought the battle with strength and pride. Please know that you mean so much to many of us here and you have support from all over the world. As has been expressed before, there are no words that can truly help, but I think we all say the same in that we will one day take some comfort in the fact that our loved ones are no longer trapped by this disease. You are right now to turn the caring inwards, to yourself. Please give yourself time to grief and time to heal. I commend you both on your bravery and your desire to help find a cure and give support, the decisions you and Sharyn made were hard ones, but extremely admirable and she will always be remembered by me for that. Although we had never met, you both felt like friends to me and you both will continue to be in my prayers forever. With love, Sharon x

Heady profile image
Heady

Dear Jim,

There are no words that I am capable of writing, to express my thoughts. Nothing, anybody can say will make it better.

The only thing I do know is, Sharyn was married to a wonderful, strong caring man. Who made her last days on earth as bearable as was humanly possible. No wonder she fought to stay with you!

Jim, you did everything possible for Sharyn, you should be very proud of yourself. Now, please, please make some time for you, to grieve, remember and just to be at peace with the world. The last part will be the hardest, but try.

I have only been on this site since September, when S was diagnosed, but I feel I know you. Your blogs were the first I read, I think you were the first person who replied to one of my questions. I have always looked for your comments when there is a question asked. I have tried hard to follow your mantra, one day at a time. You have put me straight on various issues. Jim, I really hope you realise how much you have come to mean to me and all our fellow readers.

I am so sorry for your loss and know that at long last, Sharyn is at peace, away from this wicked, evil disease.

This is the final hurdle that you will go over in this world of PSP, I'm sure, at the moment, it's feels like the highest and the worst, but like you coped with the rest, your strength WILL get you through.

I send you all my love. Please, when you are ready, keep in contact.

Lots of love

Heady

MaddyS profile image
MaddyS

Dear Jim. Our thoughts are with you during this sad time. Sharyn had a wonderful husband in you and is now in a better place. The time ahead will feel empty without her by your side. However your family and friends , as well as all of us on this forum, will help you cope. Jim, thank you for all the good advice you have given us in the past. Take care, maddy

So sorry Jim for your loss. You and your family are in my thoughts and prayers. Stay strong and take care of yourself!

groovychick profile image
groovychick

Dear Jim, I'm so very sorry for your loss. You were like a rock all throughout my time on this site any posts I've read from you sharing your experiences and offering much needed advice you have always been so positive and encouraging to all of us. My heart goes out to you and your family. You did your best, and could've done no more. Have no regrets. Your beautiful wife is now free from PSP and back to her lovely former self. Hold on tight to all those precious memories and give yourself all the time in the world. You are in my thoughts and prayers. Much love to you and your family xxxx

jimandsharynp profile image
jimandsharynp in reply to groovychick

Thanks, your prayers are appreciated as I attempt to recover.

Pram profile image
Pram

Please accept my heartfelt condolences.

Padma Ramachandran

marytea13 profile image
marytea13

Dear Jim Sorry to read Sharon has gone to a better place I am sure - "lay this body where u will except u remember Sharon before the good God" Mary

nansh6 profile image
nansh6

I am very sorry to hear this news Jim. She is at peace now. Take care of yourself.

carolinesimmons profile image
carolinesimmons

I didn't know what to pray for in the last days of my husband's life. Release for him or keeping on for me. I finally decided God's will was the only prayer. His death was much like Sharyn's and thus not so traumatic for me. His breathing was so rapid (almost 60 per/min) that I knew it could not go on for long. He died after about 48 hrs. You have my prayers and sympathy for enduring the long haul. In choosing scripture for his service, I found several that seemed to fit like a glove. I find great strength in the Lord and in His word. I hope you can, too.

Caroline

jimandsharynp profile image
jimandsharynp in reply to carolinesimmons

Thanks Caroline.

Cazmat profile image
Cazmat

Our thoughts and prayers are with you and your family, I pray that I can find your strength to carry on. Your posts have been a god send for me and you and Sharyn will be in my prayers xx

teena2 profile image
teena2

Hello Jim, I have been coming to the site less and less, but I saw your posting this morning and felt I had to respond. I know you have given lots of support to lots of people who come to this site, and we are all very grateful. I lost Chris nearly 2 years ago and still miss him. I "talk" to him every day, and as soul mate, I feel he is always with me.This has been a great comfort to me and I hope that you will find the same. My thoughts and prayers are with you at this very difficult time. As you say it is now time to look after yourself and give yourself time to recover from all the stress that we all go through when nursing a loved one. Teena2

jimandsharynp profile image
jimandsharynp in reply to teena2

Tena, Thanks. I appreciate your thoughts. I will continue to talk with Sharyn, love of my life.

quickgel profile image
quickgel

Dear Jim,

I simply wish to add my condolences to those already expressed, little can be added to that which has already been said. Your loving and common sense approach to dealing with this disease has clearly helped not only your wife but many others in similar circumstances.

Jerry.

CarlaL48 profile image
CarlaL48

Dear sweet Jim --

I'm thinking of and praying for you as you mourn the loss of your beloved Sharyn. Even as we are bereft, they are witnessing what "eye has not seen."

I especially like Isaiah 40:30-31:

Even youths grow tired and weary,

and young men stumble and fall;

31

but those who hope in the Lord

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.

Think of Sharyn soaring, running and walking, my friend. It will buoy you in the hard days ahead.

Love,

Carla

jimandsharynp profile image
jimandsharynp in reply to CarlaL48

Carla, thanks That was my wife's favorite scripture! Jim

shasha profile image
shasha

DEAR JIM I AM JUST SAD TODAY TO READ OF THE PASSING OF SHARYN BUT BELIEVE THAT SHE WILL BE IN A MUCH BETTER PLACE NOW -- YOU MUST NOW TAKE A BREAK AND BE KIND TO YOURSELF AND THANK YOU FOR STAYING ON THIS SITE TOO

MY LOVE AND SYMPATHY ARE WITH YOU SHA SHA

CheekyChops1973 profile image
CheekyChops1973

Hi Jimbo.

I know we've only swapped a couple of messages but cant help to be thinking of you at the moment . Glad you have people around for you at this terrible time . You were so kind to respond to my messages .

jimandsharynp profile image
jimandsharynp in reply to CheekyChops1973

Thanks

nomansland profile image
nomansland

Terribly sorry for you Jim,your description of Sharyn fits Madeline to a T,regardless of the illness she was still there as I feel about Madeline,I can,t see my life away from her but as you said Sharyn is free....you,somehow must take care of yourself,Love and prayers to you and the 2 boys,Rollie

Robin20 profile image
Robin20

Jim I'm so sorry.everythings so sad.did you ever try the thickened wine,thinking about you,everything's so raw for me to,take care x

jimandsharynp profile image
jimandsharynp in reply to Robin20

Robin, Didn't do the thickened wine thing but what a great thought. Thanks I'm sharing that one with my PSP support group when we next meet.

Kathy profile image
Kathy

Dear Jim,

My deepest, most heartfelt sympathy on your loss. We are sure that it now won't be long until Mum also gives up the struggle. I hope you have loved ones to support and comfort you in the coming weeks

Love Kathy x

jimandsharynp profile image
jimandsharynp in reply to Kathy

Kathy, When the time comes stay strong. Every chance you get tell your mom you lover her. When you think she can't hear when near death, she probably can so hold her hand and tell her you love her. It will help you have some closure after her passing and she is at peace. You can endure because that is what she would want you to do. Although my heart is broken I'm staying strong for the children and grandchildren. Jim

LynnO profile image
LynnO

I'm so sorry Jim, for your loss. I will keep you and your family in my prayers.

LynnO

Sawa profile image
Sawa

Dear Jim, I can only echo what others have said so much better than I could. You are certainly one of the people on this forum that drew me in and I somehow felt a more personal connection to your story. Your love for Sharyn, compassion, generosity and strength was apparent in all your posts. My heartfelt condolences and prayers go out to you at this very sad time. I wish you strength and peace. Sharyn was lucky to have you to look after her. S

hitsshanu profile image
hitsshanu

Dear Jim, I feel very sad to hear this and sorry..I have waken up from all my sorrows by your wordings...You and your wife are the one who showed what love and care is...Heads off to Sharyn and you for being an wonderful decision u have taken...Thanks a lot for being a moral support in everybody's life...May her soul rest in peace..

As u said before,everyday is a best day in your life...(Pls try to change the locations where u and ur wife has been stayed so far)..I know its bcz its tough to be without the loved ones...Be strong enough to bear the lonelyness !!!..God is with you...

Hope u will continue ur blogs with the same modulations...See u soon jim...

Take care!!!..

With lots of love,

Santhi, India.

jimandsharynp profile image
jimandsharynp in reply to hitsshanu

Santhi, Thanks. Good old American hugs are being sent your way my friend. We are here for you.

Jimbo

Frosty profile image
Frosty

I'm so sorry for your loss. I've been in this forum for a few years and have seen lots of people pass from this horrible disease. You were her rock. Now it's time to care for yourself. Take care Jim . Your in my thoughts and prayers.

jimandsharynp profile image
jimandsharynp in reply to Frosty

Thanks Frosty. Thanks for remaining on this site for a few years. Your input can, and may have, helped others. We are small in numbers relatively but if we stick together we can all be successful caregivers and share to help others. Jimbo

Didalju profile image
Didalju

To dear Jim,

I have only just logged on after a weekend away, and just wanted to express how sorry I am to read that Sharyn has passed away.

Like others before me have said, I feel like I have got to know you through your regular hugely informative blogs.

You have been such a passionate carer to your wife and I truly commend your positive outlook throughout her illness.

I will keep you in my thoughts and may God give you all the strength you need in the coming weeks and months. Take care Nicky x

jimandsharynp profile image
jimandsharynp in reply to Didalju

Didalju, It is a rough road once the PSP family member passes on. It's never easy. The thoughts of them keep rushing in like waves of grief. I keep telling myself "she is in a better place without PSP" but that doesn't stop the crashing waves. I must be strong. Jimbo

daparose profile image
daparose

Dear Jim, I am so sorry for your loss when my husband lost his fight five months ago your words gave me much comfort. My thoughts and prayers are with you.

coyle51 profile image
coyle51

I am so sorry for your loss. My thoughts are with you and your family.

blackcushion profile image
blackcushion

Jim thoughts are with you at this sad time , hope you stay on the site always looked forward to your guidance on here and it was always a comfort , look after yourself Jim xxxxx

wifemo profile image
wifemo

Dear Jim -

So pleased you were all together as a family when the time came. Stay strong, and know we are all thinking of you.

Mo

jimandsharynp profile image
jimandsharynp in reply to wifemo

Mo, Thanks. I'm trying to stay strong but it is very hard. Tears are many and heart is aching. Jim

Dear Jim, I was so sorry to hear of the passing of your beloved Sharyn. It is such a difficult time for you just now, I know as my father died three months ago after years of suffering. Like you, I am so keen to find a cure for this condition and so my father's brain and spinal cord have gone for analysis too. I will let you know the outcome of the report. We need to make every effort to investigate what is going on in the brain when diseases of this type develop. Dad, too was cremated and I have the ashes of my mother and father here with me ready to scatter when I can get all the family together and we can decide which of their favourite places they would have chosen, or maybe plant a couple of special trees close to each other and put the ashes in the earth to help them grow. Just to bring a smile to your face, perhaps, the Brain Bank here in London are also requesting 'normal' brains for biopsy! My younger son and I thought they might have a bit of a problem with that! Thank you for all your posts, they have been so helpful and I really have appreciated your support and interest. My thoughts are with you and your family, heave a sigh of relief that Sharyn suffers no more and knowing that you did everything in your power to help and comfort her. With this condition, sadly, there is nothing more we can do. Love, Anne

jimandsharynp profile image
jimandsharynp in reply to

Anne, Thanks for your kind words and humor. I needed that at this time. You and the people on this site have made my pain slightly more endurable. Jimbo

capsey31 profile image
capsey31

Dear Jim please accept my deepest sympathy on the passing of your dear wife. My father in law also passed away on 27th April from this cruel disease. Like your family we also donated his brain and spinal cord to psp research in the hope that his suffering will be rewarded by helping to find a cure or a treatment for PSP. We are having a service tomorrow to celebrate his life and we have asked family and friends to make a donation to the PSP association instead of flowers it's what he would have wanted. I know when I am in church tomorrow I will be praying for you and your family but also for all the other families you are suffering at the hands of PSP.

jimandsharynp profile image
jimandsharynp in reply to capsey31

Capsey31, your prayers are much appreciated at this time. I've also asked in Sharyn's obituary that donations be made to CurePSP (USA equivalent of PSPA) Jimbo

LizzieF profile image
LizzieF

Dear Jim

So sorry to hear of Sharyn's passing. No words can console you at this very sad time. You were both very lucky to have each other and I'm sure Sharyn wouldn't have wanted to be anywhere else but with you. I hope you can take comfort from that.

Love and best wishes

Lizzie F

jimandsharynp profile image
jimandsharynp in reply to LizzieF

Thanks Lizzie. My heart is broken but I will carry on, Sharyn would want that. Jimbo

jillannf6 profile image
jillannf6

hello dear jim

i am so sorry that sharyn has gone from this world - but as all the other s on the site have said = u r rock to us al and must take care of yourself now

lol JIll

hug sand xxxx

jimandsharynp profile image
jimandsharynp in reply to jillannf6

Thanks Jill. My heart is truly broken but I'll always have the wonderful memories of life with Sharyn. Her passing was, as compared to others with PSP, VERY good. She was pretty much fine until the last week then in four days took a bad turn and then passed on. I'm thankful she didn't struggle for a long time. She was also blessed to not have had some of the PSP symptoms others experience. Jimbo

jillannf6 profile image
jillannf6 in reply to jimandsharynp

dear jim

thanks for all your replies to our blogs on sharyn;s passing

i am glad that she did not suffer too much from this PSP - she had a blameless life and deserved to pass on as she did

no more now but we are all thinking of you and wondering how u really are

lol Jill

hugs and xxxxx

jillannf6 profile image
jillannf6

hello agan jim

i am sorry not to have replied sooner but i have jus got anew computer and it is tkaign some getting used to..;olol Jill

hug snad xxxxx

jillannf6 profile image
jillannf6

dear Jim

i am not a religious person but do hope you find peace at the passing of sharyn.

she is free of this PSP now land you have to look after your self too=-------

buff said

lol Jill]and hugs and xxxx to u and ur family

JanStott profile image
JanStott

So sorry Jim to hear of Sharyn's passing I feel your pain immensely, time is a great healer but time will be plentiful now as you will see how much time you spent caring for your beloved wife, don't have any regrets as those who care for people have hearts of gold. My prayers and thoughts are with you and your family.

Jan xx

jimandsharynp profile image
jimandsharynp in reply to JanStott

Jan, Thanks for your kind words. Yes, the pain is just awful! Last night I was crying and actually cried out in anguish (not anger) loudly. Who knows what the neighbors thought. It did give me some short bit of release/relief. Jimbo

elizalou1710 profile image
elizalou1710

Sorry to hear this Jim my thoughts are with you x take good care of yourself Louise x

jimandsharynp profile image
jimandsharynp in reply to elizalou1710

Thanks. Much appreciated.

Peter3 profile image
Peter3

Dear Jim,

I am so sorry to hear about Sharyn. A peaceful release for her, but a very hard time for you. I will be thinking and praying for you at this very sad time.

My apologise for being late with my condolences, my husband has been in respite care for 2 weeks and I have had short break and decided not to read any emails etc whilst away. It came as a shock when I visited healthunlocked today to read your news.

Peter3.

jimandsharynp profile image
jimandsharynp in reply to Peter3

Peter, you are an inspiration to us all. Keep in touch now, I need it. I'm hurting jimbo

You may also like...

A difficult subject

question of Robin Riddle of CurePSP. Brain donation is presented as an option for PSP and CBD...

Her journey is over...💔💔

courageous mum, Marie, lost her battle with PSP and went to a better place. My heart is broken and...

The fight begins into why my father in law was refused CHC

that people with PSP need nursing care to help them and their carers live out this disease in...

Panic over cataract surgery

hospital as she takes over an hour sometimes two to finish and then I have to wash and shower her....

Add on to my previous post.

with progressive supranuclear palsy (PSP), a neurological disease for which there is (so far) no...