My sweetheart died Saturday morning. Eight days before, Just a few days after I wrote in some reply here that he was choosing to live, he decided otherwise, and simply and firmly refused all water and food from the morning on. I thought at first that he might forget overnight, but he kept his focus and determination to the end. He wouldn't even take ice chips in case I was trying to undermine his decision. He was brave and steady, never wavered.
It was such a strange week, but there were comforts. The nearby son brought his little girls, who scampered about and cheered me up while he talked to his father. His lovely faraway daughters, who had come to spend Easter with us, visited often by FaceTime, and assured him they were safe and happy, which is what he wanted. Good friends came from far away and kept us company. I was able to get him into his reclining wheelchair one gorgeous spring day and took him out on the deck, and he basked in the sun and warm breezes through the long afternoon.
Hospice was with us all the way. He and I had wonderful support from them, day and night. The visit from the music therapist was the best thing. An hour of hammer dulcimer meditation-type music and we all became relaxed and peaceful. My love's cramped muscles and strained breathing relaxed then and never tensed again, through the last two days.
The lovely and stalwart aide who had been with us for the last 16 months or so was also with us to the end, and really helped me keep him physically comfortable. I am so grateful for her. She had massaged his feet every day since she first came, and was doing that as he breathed his last. I had my arms around him and was talking about our first hike 10 years ago, and how happy we were that day.
I was able to keep him home, and that helps. As someone else said recently, although we wanted to spend the rest of our lives together, he did spend the rest of his life with me, and I must be grateful for that.
I never could have gotten through this psp ordeal without all of you here in this community. For many years you have given me support, advice, information and friendship. Thank you, one and all. Love, peace and courage to you.
Ec
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easterncedar
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Oh Ec. What can I say? Your darlings passing sounded so much like C's. The next few days will seem strange with so much to sort out and folk around you but I hope that soon, in the future , you will come to know that life can be good again. He will never really leave you but if you make a new life for yourself you will once again know joy, peace and a life worth living.
Aww EC, my most heartfelt condolences darling, I'm so very sorry, but I'm pleased it was a peaceful passing and that your darling is now free of this evil disease! Time now, to be kind to yourself and take time to grieve and heal! I'm sooooo sad for you! Much love x
I am so sorry for your loss. His passing sounded as peaceful as it could be, and i'm glad he was at home with you. Please know i'll be thinking of you as you begin your new journey through life. My prayers are with you and your family.
Dearest EC, I am so so sorry for your loss but your loved one is now free from this wicked disease. Take your time grieving, may you continue to be surrounded by your loved ones.
All of your family helped support and love you both and I hope that is a great comfort to you in the dark days ahead.
You have shared so much and helped me so much over these last years.
Lots of love, Jean x
EC
Words fail me ,Your sweetheart was a strong man and knowing he went the way he chose although it doesn't make it hurt any less ,he was able to leave this terrible unforgiving disease behind.
My heart goes out to you. Praying that you can find comfort in the memories, and in the certain assurance that you did everything you knew to do for your precious hubby during his illness. You made his life richer through his disease, and you respected his wishes when he determined it was time to go. You are my hero. I hope when our time comes, I can emulate your love and compassion. You are most assuredly in my prayers.
EC I was very sad to read your post. You both suffered for so long but still found the strength to help all of us. His passing seems to have been peaceful and very brave. I do hope you can find comfort in the beautiful surroundings of the home where you shared.
Dearest EC I am so very sorry that your loved one has gone. However he had a peaceful death and he chose how to go? What a brave man.
However he had a brave lady take care of him and help him along the way. You have been so very kind to everyone on here too and I really hope you stay with us going forward.
Now it's time to grieve for the loss of your loved one. May he rest in peace and may you have peace of mind knowing he did it his way and it sounds like the right way too. God bless you.
So so sad to read of the passing of your remarkable and loving life partner. Over time we came to know what an unusually fine and accomplished person he is as you brought both of your experiences and experience to the site. We could even visualize life in Maine where you live . His great qualities met their match in you. I firmly believe that you were each others most precious gift and I know that you were his warmth, light, and joy, throughout everything !
Sending you much love and endless thanks for your generous, insightful, humorous, wise , and selfless help that you and through you, your sweetheart have given to us all. You both have made a great difference in countless lives !
You know my thoughts EC. You have been an extremely strong woman that enabled your sweetheart to fulfill his last wishes. Be very proud of yourself. The PSP journey is not an easy one, yet you have always portrayed a calmness that has got you and your man through and always, always had time to help the rest of us. Your personal help to me over the years that I have come to know you, is unmeasurable. For that I will be eternally grateful. There is life after PSP, I know that is the last thing you are thinking about now. For now just take each hour, even down to each second, as it is. You did as you promised, looked after him until the end. I repeat, be very, very proud and take huge comfort from that fact.
Dear EC, I'm so sorry for your loss and I want to say thank you for sharing the beginning and the end with us. Your sweetheart is free from PSP and what a nice way to leave, being reminded of how happy you were on that first hike together. May you and your family find strength and comfort in the days that lie ahead. Lots of love, Nanny857 xx
My heart is aching for you...such as beautiful post as I often wonder what it will be like for us as the family and for my dad, the PSP fighter.
What words can bring comfort? I don't know if there are any...except to know that your love is with the Lord and is smiling again, happily moving free, without PSP holding him down. You both are warriors. You both are more than conquerors to have walked down this path that only those who encounter PSP knows about. We love you for the care you extend to your family, your sweetheart and us...and may God bless you abundantly- with health, with peace, with His warm embrace. XOXO
So sad to hear the sad news EC, you have been an inspiration to us all and now it is time for us all to give you the love and support that you have showed to others along the way. I'm so glad that his passing was calm and peaceful and that friends and family were able to say their goodbyes. Peace and calm be with you and take time to grieve in your own way
Dear Ec. I have only just read your post and want to pass on to you my deepest sympathies. I was remembering the lovely post you wrote about how you met and your lives together. He seemed like a wonderful man who lived life to the full. It was lovely you were able to be with him to the end. God Bless you.
Also sorry for my late reply, EC you are an amazing lady, always there with your wise words, your sweetheart is in a much better place, your post brought tears to my eyes. From reading your posts all this time, you had so much love for each other, may your sweetheart rest in peace, away from this horrible illness. May you lovely lady, find some comfort in knowing you did all you could for your sweetheart, you are one amazing lady xxxxx Yvonne xx.
You,EC have guided many of us on this site through your posts with helpful information concerning whatever is bothering us at the time.Now you are still helping us even through your own grief,by setting an example of true love and compassion.We who are dealing with this dreadful disease all wonder what the end will be like and when it will come.God Bless-my tears are blurring my vision.
Oh how sad. Made me cry. I send you love and my greatest sympathys xxxx
My condolences on your loss. What a peaceful way to leave all your cares and woes behind. God bless you now and give you strength to face your new life. Marie.
Oh EC, I have b even thinking about you since yesterday and feeling a strong pull to check back in on this site. Now I know why. So many replies... new names, a few familiar old ones. But I see you have carried on being a caring, kind, supportive influence here. I know exactly what you went through, supporting his choice and watching him slip away. You are a strong amazing woman, and you did it! You cared and cried and cleaned up broken toilets.. you survived and stayed by his side until he took his last breath. The next couple of days and weeks ahead will be confusing- you won't know what to do with yoursel. You will be able to do anything you want to but you won't want to get out of bed.. You'll keep looking to see if he's ok and he won't be where he usually was... Sleep, if others want to help or do things for you let them. If they don't be kind to yourself. Grief has its own timetable. Heady is right. There is life after PSP even though it does not feel like that now. But trust me it will get better. And you will live on knowing you were there for him. And everyone here understands exactly what that entails. I just read the message you sent me several months ago and I am sorry I never replied Please know that I am here if you want to talk. I'll send you my contact information. Stay strong, much love,
HI Anne, I am good! Long journey to get to the place I am now. We had a beautiful memorial at the end of the year. The holidays were very sad for me. I tend to isolate myself ,(not wanting to be a burden on others). If I went through it all again I would reach out more to those who expressed concern for me instead of holing up alone. There were legal issues with his family which I had anticipated but I managed to stand my ground. PSP has made me one tough little cookie I am still trying to figure out what the next chapter of my life will be. Conversations are weird for me. They are no longer one sided!!! And had hernia surgery. All the lifting took it's toll. Trying to exercise, and eventually I need to find some kind of employment. A little too young to retire! But honestly, it was if I was mourning him long before he was physically gone, if that makes any sense. When my parents passed it was a long drawn out slow grieving process. This was so incredibly overwhelmingly painful all at once. But like I just said PSP has made me one tough little cookie...
About the same as you. Life can be good, feels as if I am over this grieving bit, then wham, I am back where I was. I need to be organised by someone, normally my sister or daughter, then I am OK. It's trying to find life on my own that's hard. My family understand, but new people think I am very strange to be doing some of the things I am doing, this early. But they are not aware of what I have been through. Like you say, PSP has changed me. I do need to use that much needed fighting spirit on myself a bit more though!
My mother said to say yes to every invitation, because people will stop asking if you say no. She has been living the yes since my father died, and has continued to get around amazingly, at 90.
That is so beautifully put," within the sad are small rays of joy as life goes on..." Yes!!! My wish for you is for more warming rays of joy to make there way to you each day.
Oh Eastern Cedar what can I say- I am so sorry for your loss but happy that this awful journey has come to an end for both of you . I feel I have known both of you for years and I shall miss you and your partner as we have exchanged stories of the changing seasons , laughed and cried together . My thoughts and love are with you .
Oh no. I am so sorry. Thank you for posting this wonderful description of his last few days with you all. You have no idea how helpful you have been to us in generously sharing your advice, understanding and friendship. Thinking about you and sending love.
As I read this there are tears running down my face. You lovely soul. I hope when it comes time, I am as strong as your partner. It is a choice I make now and hope I remember to follow it. The very fact that you write of this with such love, thoughtfulness and compassion is truly a testament to what a wonderful person you are.
I'm so very sorry for your loss. But, it sounds like a wonderful end for him. May you take succour from that In the long days ahead. Whether we like it or not, it's life and for us life goes on. Sending big hugs.
My heart goes out to you EC. I am glad you were there and he was at home and chose to go in his way.
I have enjoyed your wise and comforting words over the last years and how you helped when Margaret passed over. Now I cannot find words to help you at this time. All I can say is be strong grieve for him and then slowly start to live for yourself and be aware it will take longer than you think. Enjoy the Maine summer.
Condolences and best wishes to you and your family. Tim
ec what can I say big kisses and hugs in tears reading your message. Such a lovely description of your loved ones journey. Please take care of yourself. Xx
How Brave you have both been. My eyes are wet and my heart goes out to you and Yes, we need this community to keep us all focused and strong. Sending Love
I'm in the US, so no CHC. The aide was found for me through a friend of a friend; she isn't trained, except as a massage therapist, but is smart and engaged and caring. We were SO lucky that she came our way just at the right time.
I've only been posting and following for a short time and just put it together about you husband's passing. I am so sorry. I am so familiar with your name now. I'm sure I will be reading your posts for a while into the future - Thank You so much and Be So Well
Words fail me after reading about the passing of your dear husband. I'm so, so sorry for your loss. You have been a pillar of strength to so many on this site. I hope you can find the strength to continue and live your life. My thoughts and prayers are with you xx
I'm so, so very sorry for your loss. Those are big shoes to fill, I hope that I can honour and follow the grace, strength and bravery that you spoke of.
I know you know how much you were loved...how much you are still loved as PSP slowly took your body. I know you knew that your wife did everything she could for you and that she would do it all again if she had to, for she loved you that much! You have been a good husband to her and your family and friends are better people knowing and loving you. Goodbye friend, rest assured your wife still has this family here to love her and get her through the next stage of this journey.
My dear Ec,
You have been such a wonderful addition to this family. I have been so comforted by your words and have learned so much by your insight and experiences. I will , we will , be here when you need us. As you start the next leg of your journey take comfort in knowing that we are hear for you....I do pray that your bereavement comes with rays of joy as you remember the sweetness of your man and the experience your new journey will bring...
Love,
Your Sister in PSP,
AVB
Yea thou I walk through the valley of the shadow of death, I will fear no evil; for thou art with me ; thy rod and thy staff comfort me... Psalm 23:4
Casting all your care upon him, for he careth for you. I Peter 5:7
EC, what a sad but touching post. It is sad that he is gone, of course, but you have both been blessed with what sounds like a lovely departure for him from this world and the horribleness of PSP. We should all wish to go being lovingly held and thinking of happy memories. I am forever grateful that my beloved hubby had a peaceful end, and it has comforted me so much, as I pray it does for you too. You have been such a comfort and support to so many of us on this site, and I hope that you feel you can lean on us now for as long as you want.
So sorry EC. You hung in there for so long. Seeing all of our friends posts above bring back so many memories. We've lost so many precious loved ones over the past year. I know they're all up in Heaven looking down at us and with love. Can't wait to join them some day. May God give you lots of strength in the coming days.
I just read this and no new words come to mind. All 60 replies here say what I couldn't but I concur and my heart agrees. I love what you have written, eloquent and beautiful.
You have been our strength, always sharing, always caring. As the years wind down we have been together on the journey, alas we have lost some of our "friends" here but their loved ones keep on offering aid and hope to the rest of us. Please continue to do so as well. I am selfish and need you now!
The last of the family arrives this weekend and it may be the turning point.
My a.m. caregiver has crapped out so I'm on my own. I think God is giving me this opportunity to spend more time with Charles and I'm happy with these precious days.
You kept him home too and I'm determined I will as well. You are an inspiration and I'm sending blessings and much love,
Very sorry for your loss ,I hope you can celebrate his life and be glad that the pain and suffering is done . This disease produces so many emotions , both positive and negative ,that I hope you take some time for yourself and summarize all you have been through ,process it and enjoy the rest of your days ....peace/out ...jeff NF
EC
I am so very sorry to hear of your loss, my thoughts are with you and sending a huge loving hug across the pond to you right now..mx
I'm very sorry for your loss of your beloved. He (and my Daddy who died 26 days ago,) were cursed with psp, but your sweetheart was blessed to have you by his side until the very end. (People tell me my dad was blessed to have me as one of his caretakers, but I still feel the honor was all mine.) I'll pray you'll soon find joy once again. And I'm very sorry.
Ec. You were such a comfort to me while my Bill was so very sick. Just reading your supportive posts to so many others helped me. Now I am hoping all these posts are helping you. Bill has gone ahead almost a year now. We are celebrating him at a white Sox game tomorrow as he asked that we celebrate him once a year!! Lol. I must tell you tho that the hardest thing is that he is just not here. But then I remind myself that yes he is. A drop of lotion spilled yesterday and landed on my big toe not the carpet !! Yep he's here!!! Keep looking for your guy! He is here and will be with you always!
God bless and thanks again for all the help you gave me!
Something told me to come onto the site today, I never imagined it was to read your news. There is something that happens to you when you are with someone you love when they take their last breath, it is both heart breaking and liberating at the same time, the suffering is done.
Although we have never met, I always pictured the beautiful cabin and you both looking out quietly enjoying all the beauty nature has to offer, blankets over your legs a warm cup of tea and a comfortable silence that only love can create
You were very lucky to find your love and have it even if it was brief but in the words of Alfred Lord Tennyson "‘T is better to have loved and lost
than never to have loved at all".
My heart goes out to you and may you find the strength and courage to live without your love...
I am so sorry to hear of your loss. You have been so supportive of all on this site and helped so many of us. I was always comforted to know you were so nearby in New England and seeing the same seasons as I am. Thank you for all your kind words and wisdom over the years. My mom and dad also passed very peacefully within 4 days of each other back in January. They are off on a new adventure together.
I had no idea it was only a month ago that your love's journey came to an end. I too was in tears as I read your description of his passing. I am so sorry for your loss. Wishing you peace and courage and love. EE
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I am still trying to figure out what the next chapter of my life will be. Conversations are weird for me. They are no longer one sided!!! And had hernia surgery. All the lifting took it's toll. Trying to exercise, and eventually I need to find some kind of employment. A little too young to retire! But honestly, it was if I was mourning him long before he was physically gone, if that makes any sense. When my parents passed it was a long drawn out slow grieving process. This was so incredibly overwhelmingly painful all at once. But like I just said PSP has made me one tough little cookie... 
He is resting in peace.
Not PSP related, but Mum's gone
