I woke this morning around 5 hearing Larry call me in my dream. I got a call from hospice half an hour later that he died around that time. I went over with his cousin Diane and her husband Michael. I held him, caressed him and kissed him for 2.5 hours as we talked about him. He was still warm when we first got there. It's so hard to lose him but he is free of this ordeal. He never wanted this. Now I get to grieve.
I want to thank everyone on this site for all the support and information about PSP. He actually got off lucky. He never had pneumonia, a UTI or a bowel blockage. Or any of the many other possible things that could happen.
The photo is of us about 14 years ago. I like this photo. Shows him as he was. I am in front Larry is in back.
Oh Jeff so sad, but at least he is away from this horrible illness, may he now rest in peace. So happy you could spend time with Larry after he passed. Now Jeff grieve for you loved one, cry when you feel the need, your post made me feel so sad for you. Yvonne xxxxx
Oh Jeff, I am so sorry. May Larry rest in peace finally free from this evil disease.
Now my dear, it is time for you to practice your hard learnt caring skills on yourself. Grieving is extremely tiring, rest as much as possible, you have the physical side of caring to get over, long before you can even start to think about the emotional side.
There is only one way to grieve and that is YOUR way, wallow in self pity, or paint the town red, anything in between works as well, as long as it's what you want to do. Nothing bar the essentials need to be done today, so if you don't feel ready, then don't do whatever!
No doubt you are in that wonderful numb bubble at the moment, accept and enjoy it.
I'm so sorry to hear about his passing. My thoughts are with you this day as they had been these past days and weeks. This disease we have is hard on both us patients and our caregivers but after we ALL have finished with this disease, you the caregivers are left with an even harder task ahead of adjusting to life without us. Please, accept my sincere condolences and always remember the love and friendship that was Larry as you grieve.
I'm so sorry to hear that Jeff. He was clearly a very special person and you were blessed to have had so many good times together. As time passes those memories become more vivid.
He called you. He was with you. I believe in that. That's the most beautiful picture. So much love and happiness in it. My sympathies, Jeff. It's a terrible loss. Warm hugs to you. Be very kind to yourself now. Rest. Love, Sarah
That is a lovely photo! Thank you for sharing your story and advice with all of us during such difficult times. Your sense of humor is contagious and I admire how wonderful you were with Larry. As others have said, it’s time to transfer those caregiving skills to yourself now. It’s pretty amazing that you heard Larry calling you in your dream. Keep dreaming knowing that Larry is at peace.
We have a lot of hummingbirds here and when they appear I always say hello to the people I know who have passed. It’s a story that I will share about my mom some day. I’m not ready to do that yet. However, I will add Larry to my list and say hello to him when the hummers hum by.
Jeff, This is heartbreaking news and I will be thinking of you often. I’m so sorry for your loss.
The day my Henry died, while the nurse and I were dressing him, the aide, all unaware of the hummingbird link to PSP, filled my hummingbird feeder with nectar that she had thoughtfully prepared at her home the night before and hung it for the first time of the year. There was a hummingbird there when I passed the window shortly after. It meant something to me.
This site makes me cry. I’m so sorry for you Jeff that you have lost Larry.
In the same circumstances that I lost my David, whilst he was in respite care while I could take a break.
He was obviously ready to go, and as someone said to me two years ago, maybe he didn’t want to put you through the moment.
You have been THE most wonderful carer for him, and he will have appreciated that so much.
Such a nice photo that you have taken the time to post.
Now, it’s the time to begin to care for yourself, as several people have already said. All the jobs will be there whenever, so just stop for a bit and take the time to Grieve and to look after yourself.
Then take a deep breath and give Larry the sendoff he deserves.
We are all here for you if you need to ask anything, you know that, but we also know that you might need to take yourself away for a bit. Do what’s right for you.
Dear Jeff, I didn’t log on this morning (I’m in Northern California) because I didn’t want to see your news. I just logged on now and I am so so very sorry for you and yet relieved that Larry no longer has to deal with this damn disease. Please take care of yourself and live with memories of the good days.
I'm so sorry for your loss. Loved your picture, you look like such a happy couple. I'm guessing you have many happy memories of your life together. They will help you through this sad time. It's time now to start taking care of yourself. You will be in my thoughts and prayers.
Sending love and cyber support from Ireland 🇮🇪 I’ve read your messages and it’s clear you’ve looked after and loved Larry immensely. My father Harry will transfer from hospital to a hospice tomorrow for Pallative care he’s deterioration has been rapid, his swallow is gone and speech is very difficult and inaudible. PSP is a thief that steals everything but their spirits will soar and hopefully they will meet somewhere over the rainbow 🌈🙏🏻💔🤗
My heart goes out to you. I have been following your posts since cbd diagnosis 3 years ago. I hope My end is as peaceful.let yourself have time to grieve,you deserve that after all you’ve done.big hugsxx
Jeff I am so sorry for your loss. I hope you find comfort that called to you Larry and he is now free from the grip of this awful disease. I'm glad you got to be his spouse again and were able to hold him.
Thank you for sharing a lovely photo, you were blessed to have had each other.
I can't imagine what you are feeling right now but I can imagine there are many conflicting emotions & deep heartbreak. This is a normal response & grief.
Thank you for sharing a photo of you both & a fond memory.
You have been a rock for Larry. Please take solace from the fact that he is now free from this horrid illness. All your PSPA friends are with you in spirit as you grieve.
Dearest Jeff i am so sad about Larry. You had so much love together and to hear him in your dream is remarkable and amazing. God bless to you both. Love Joy xxx
I am so sorry, you must feel shell shocked. Thinking of you & wishing you strength to get through the days ahead.
The photo is lovely, gives you a real sense of Larry and shows the love & affection you have each for each other.
Wish I was able to do something practical for you as you have helped me so much with your posts but I'm the wrong side of the pond. Sending you love & hugs
At first Words failed me this morning as l read of Larry's passing...
But l decided to share a little true story. Years ago in the middle of the day l saw three floating figures... they seemed benevolent... none had facial features but the one in the middle seemed familiar... l asked what they wanted - no answer. I asked why they were there - no answer. Then they were gone. I was puzzled to say the least but not afraid. About 30 minutes later l got a call... my father had died.
A close friend tried to explain my experience... he said the two figures where guiding him to his next destination... l accepted the explanation in my heart. Personally, l think Larry connected with you in your dream. I hope you Treasure that possibility. Sending gentle hugs to you & Larry... Granni B
So sorry to hear your sad news. My sister died the same way no pneumonia or infection. It was such a shock for us all but at least she didn't suffer and the same for Larry. Take care xx
Jeff, what a wonderful photo to have as you look back on the good times in coming days and months. Larry suffers no more but you have a loss to bear. My sympathy to you and Diane and all who mourn him.
Oh Jeff. This is the news I knew was coming but didn't want to hear. Your love for each other will, hopefully, carry you through the coming times. May he Rest In Peace. Sending prayers and hugs to you all. 🙏🙏💔💔
Dear Jeff, my deepest, heartfelt condolences to you in Larry's passing. He and the love you shared will always be with you.
We all thank you and Larry for sharing your journey with us as we traveled this illness road called PSP.
Please let us share with you your grief and know we are all hear for you. You are a remarkable man just as Larry was. Much love to you and peace to Larry.
So proud of you and we grieve with you. Larry is free from the grasp of PSP. You were a stalwart and his strength. May memories of your love sustain you in the days ahead.
We are here for you. Praying for you and your family.
I am just so sorry you have lost Larry. Rejoicing that he is free of his body that no longer served him. Losing our loved ones is so hard but following this type of disease and this high level of caregiving, it must be a very different experience.
As someone else said, grieve in your own way, no matter what that is. First, I hope that you get lots of rest. I hope you have family or friends close by to spend some time with.
When you are able, please stay in touch with us if it's not too painful. You have been a mainstay since I've been on this site.
Beautiful sending on- peace at last. Take as best care of yourself as you can and allow others to support you now as you grieve and heal. Do it your way-there is no right or wrong and no time frame for you feelings. If you feel joy in his release from the disease its ok, no judgment. It sounds like you took amazing care of Larry, you were both very fortunate to have each other. Hugs, Pat
Oh Jeff, I'm so sorry. We all know it's coming but that doesn't make it any easier.
You cared for Larry so well and he knew that. It's his turn to walk beside you and guide you now.
He will be there, every step of the way.
Be good to yourself.
Sending you big hugs and lots of love at this very sad time.
Jeff, I love that Larry called out to you as he passed from this world to the next. He was still with you spiritually even though he was not able to be with you physically.
I’m sure there are some tough days ahead for you. I will keep you in my prayers. Just remember the love.....
I am so sorry to hear this. I think it’s beautiful that he called out to you and that you were able to be with him after his passing. Take good care of yourself now and take head of all the good advice on here. Stay on here as I have found it so helpful through both Steve’s illness and now my grieving for him.
Sending you lots of love and hugs and I love the photo of you both.
Jeff, I first joined this online resource because of your posts. You are the most caring individual I have been made aware of and I couldn't help but admire your courage, love and resilience. My heart goes out to you. I will remember you and your fight for Larry forever and hope it will help me through my attempts to emulate you in my care of David.
Jeff, I send my deepest condolences. My dear Steve is on this journey and my heart breaks every day. I hope I have the love and grace you showed to Larry throughout this bitter trek.
Hi Jeff I know what you are going through I lost my husband 8 weeks ago from psp and have cried everyday since we were married for 53 years and have a pain in the pit of my stomach as you must have. They say that time heals I'm not sure if it will sending you my love x
My most sincere condolences. You have been an awesome carer. I really mean that. I hope I am half as good as you have been these last couple of years. And you guys made a great couple. Larry looks like a great guy with a lot of character.
Take care of yourself now and take the time to grieve. I know you haven't had much time to yourself in a long time.
I will be thinking about both of and sending love and prayers your way.
Such happy memories. What a beautiful photo. So sorry for your loss and how special that Larry visited you in your dreams. What a special connection you both had
My friend lost his young daughter a few years ago and I remember her saying to him. Daddy when I die my pain will end but yours will just be beginning. How true and such an special words from a 9 year is girl.
It’s true our pain begins when someone dies and as others point out now it is your time.
If tears are diamonds we are all rich beyond our wildest dreams. So catch each one, it’s a precious memory. Larry lives on in your heart.
Jeff, I know you don’t know me but I have read your posts since joining this group. I am so very sorry for your loss. You have created a very vivid picture of Larry and it was so obvious how much you love him. Thank you for sharing your experience and life with us.
Dearest Jeff. I only just got back from a few days away with my family and was so very, very sorry to see this post. He was so lucky to have had you and all the wonderful care and support you gave him when he became ill. What a lovely photo of happier days. I hope that soon happy memories will take over the deep hurt and loss that I know that you are now feeling. We are all here for you as it is you who now needs the love and support. Big hug. AliBee xxx
So sorry for your loss. He looked a lovely happy chap. You will have lots of lovely memories I am sure. I lost my Ken 2 months ago. Know how you must feel. Best wishes. Pat
I have just read your post and send you love. I am so sorry that Larry has left you but know that amongst the grief you will be pleased his (and your) ordeal is over.
It won't be easy but you will cope knowing he is out of pain and struggling.
It is 2 years this month since I lost Les. I am slowly coming to terms with it now. I have a grief counsellor to thank for how I feel now. Take however long you need to recover. I have been lucky to have support from everyone in this forum and I am sure you will find the way forward.
Oh Jeff!!! I’m just seeing this news - I’ve been offline the past week! I am so very sorry! I’m trying to wrap by brain around this .... I was so happy to see that you were getting a week, and that Larry was in capable hands to offer this much needed time for you.
I pray that you can find yourself again. Larry had his angel on earth, having you to care for him so selflessly —- now He’s resting without pain.
I will be praying for you friend on this new journey ... surround you with angels. Xo
I have not been following this site closely the last few months since losing Kurt but am always touched by the kindness and love in the posts I read. Sending you hugs and Light, to bring you peace and healing as you recover from your loss. Kathy
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Living and dying with PSP
My grandad <3 died at the hands of psp 11.4.13
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