It feels odd to type those words. Others in our group write similar words but I really thought we were a couple of years away from losing him, at least a year. He had been declining the past month, but there were no more plateaus. It just picked up speed as the month went on.
We had a lot of company in and out but it was just our sons and me in the house when he passed about 4:00am. I think that was meant to be. It doesn't seem real. I think it'll take a while before it really sinks in.
I was surprised when things went down so fast and it seemed to me he "left early." My son says "Mom, he was in terrible shape a long time ago. He didn't leave early." He and I did everything we could to piece him together, to keep on keeping on. I think we had a healthy case of denial and it's probably why we were both able to keep going. We were both at the point where we couldn't keep going much longer with this disease.
I did not allow myself to get fatigued until I knew he was very close to the end. Now, I feel so tired. Time to get lots of rest and take good care of myself.
God bless all of you people.
Joy
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Oh Joy! Am sad for you that it has happened so quickly. But Sandy can now rest in Peace, as can you.
Rest and sleep as and when you want to.
You will feel lost with nothing to do but there will be many happy-sad memories to help you, and also good feelings that you did well to care for him as you did. Take pride in that!
I'm so sorry to hear your sad news Joy, its such a shock when it actually happens, even though you may know that the end is approaching. I'm pleased that you and your sons were able to be with him and say your goodbyes, I'm sure that Ben knew we were all there and it must be such a comfort as life passes from your body. I'm not surprised you feel absolutely shattered, after caring and worrying for so long it's inevitable that you are worn out. Try to rest as much as you can, your body needs it in order to get through the next few days,weeks and years, it's a hard journey but you will eventually get used with the new life ahead of you. Meanwhile be kind to yourself, grieve in the way that's comfortable for you and let people help if they offer.
Oh Joy, I am so sorry to hear that Sandy has passed away. May he rest in peace finally free from this evil disease.
Now it's your turn, use those very heard learnt caring skills on yourself. Only do the things you have to, let others take over. Of course you are tired, it will take a long time to recover from the physical side of caring, that's before you can even start thinking about the mental side. Enjoy your bubble, that no doubt you are in at the moment. It does get you through these first few weeks.
I'm glad you and your sons were able to be with him at the end, it will be a big comfort to you.
Grief is very hard and there is only one way to do it, that's YOUR way, don't let anyone tell you otherwise.
I am so sorry that you have had to write this post and 'earlier' than you expected to do so. You will have been living on adrenaline for a long time now in order to keep both of you going for so long, so you will be tired: its the body's way of helping you get through the time ahead. Just be kind to yourself now and rest when you need to do so to give you the strength for the time ahead.
May God be with you at this time, supporting you and your sons and your family.
Big hug. AliBee
So sorry to hear. Sounds so much like Larry’s death. I knew it was coming but sort of ignored it the best I could. I speculated he would possibly live for another year. I had anticipated his death for so long and he didn’t die it got put on a back burner.
The exhaustion, for me, was there as well. Seven weeks on I feel a little better.
Joy, I am so sorry and saddened to read of Sandy's passing. Words can never convey our sorrow for you and your family. We all have to face this horrible door at some point. Rest and recover. Sandy is at peace and now you must find yours.
I know how you feel. It's been just a week and three days since I lost Jerry. He too really declined rapidly for the last 6 months. Time will help us heal. Hugs to you and do take care. Jeri
You have my deepest condole. You are right now is the time to sit back and take a deep breath. Things will be different going forward but you can do so knowing Sandy is at peace now.
Joy so sorry to hear that Sandy is gone .He is home with God ,free of the pain and agony of PSP. May he rest in peace 🙏 Prayers are with you and you family at this sad time. God bless you and your family
I just read the post about the party and all of the friends and family that were around during Sandy’s last days. Now I’m finding out that he has passed and he is free from this horrific disease. Even towards the end you were making memories.
I understand the healthy case of denial and how we all seem to manage to just keep on keeping on. Even still, it is a shock and I am so sorry for your loss. You’re due for some much needed rest. I hope the 7 week old will be around for you to give plenty of hugs to.
Love and hugs from I SewBears
Joy
Death leaves a heartache no one can heal, love leaves a memory no one can steal.💔
I’m so sorry Joy. Sandy was so blessed to have you in his corner. Rest-your labor of love for Sandy has probably taken even more out of you than you know. Take care of yourself-hugging you from here-
I am so sorry to read this, but as I lie in bed and listen to my own mother’s uncomfortable wails — we had to lay her on her other side to sleep to stop progression of skin breakdown — I am also so glad Sandy is relieved of this miserable disease. I hope the coming weeks bring you rest and healing.
So so sorry to hear of Sandy’s passing. Have been exactly where you are so recently and it’s so so sad to hear of yet another PSP fight being over
So pleased your sons and you were with him. Hang onto those good memories in time they will be stronger and give you great comfort
Can’t stress enough that now is your time. Rest recover and just put yourself first Something I am almost certain you haven’t done for ages !
If tears were diamonds we would be rich beyond our wildest dreams ! so let them fall. Catch a few and relive precious memories and bask in your shared love within your family
Sandys battle is over. He is at peace finally. I hope you all find the same peace in your hearts
Your story is endearing and sad. Thank you for sharing your experiences. The effort made is limited to the health of caregivers. Who does what she/he can has not asked for more. It is very difficult for outside your circle of caregivers to understand the effort and suffering involved in seeing this disease progress in a loved one.
A big hug Joy and family.
Now begin the time to thank the good times, and recover from the physical and psychic effort. Life goes on.
Luis
So sorry to hear such sad news.
Rest assured Sandy is at peace and walking by your side. He will take care of you now, as you did for him.
My husband passed away in September and I miss him a lot. I usually there is a lot to do and then nothing but life goes on and with family and friends you must try then to keep busy. I'm sure our husband's wouldn't want it any other way.
I'm soo sorry for your loss but he can now rest in peace x
My sincere condolences to you and your family for the loss of Sandy. He is finally at Peace. Time now for you to find Peace too. Hold the memories in your heart. Prayers and hugs to you all. 🙏🙏🙏💔💔💔
I am so sorry. Reading your post brought everything back. My Georg looked just like your man and the things you wrote are exactly what I was doing 2 years ago but didn't realise it. Thank you for sharing, it made me reflect as well-and the sense of loss never seems to go away even though towards the end you don't know how you will make it through another night without sleep. 2 years on I still feel tired (can't possibly be from only 1 week to go before my 73rd!!)
I am at a loss for words. I had only replied to your post about the party about 7 hours ago. I and the members of this PSP/CBD/MSA/FTD family grieve with you and your family and friends at his passing. As you remember his life, don't forget to let the others around you know him as well. The little ones should know and understand the man that he was. It is not only our experiences but our ancestry that shapes us and what better way to honor his memory than to keep him alive in your hearts.
Joy, what beautiful leave-taking Sandy had, with many tender moments with you, with his sons and with friends and family. He was a "trooper," and had been through a lot. I can't imagine what this feels like; for years, 24-7, your energies and thoughts are focused on helping him and on managing his care and your own household and then it changes, completely. I hope that you find beauty in this grieving time, too- in memories, in prayer, in gratitude for the life you had together, in the family that walks with you now. Thinking of you and sending some prayers your way.
Happy to know that he had his family in to visit with him prior to his passing. I’m sure he left this world feeling the love. I’d say that was leaving on a positive note. Take care of yourself in the days ahead. I will keep you in my thoughts.
On the one hand, I'm sad to read this post and my heart goes out to you.
On the other hand, I'm glad that he didn't linger for months as my husband did. We had compared your husband's progress with my husband's several times because they seemed to progress in much the same way so I feared that Sandy might linger like that too.
I hope you will be able to get some rest now. Keep your memories close. They will help you get through this.
I am so very sorry for your loss. My husband confided in me that he didn't expect to see this Christmas, but was hoping now that we are this close, he will. Sending much love your way.
I am sorry to hear your news. He looks like he was a really interesting man. Thank you for all your posts over the year - it is a real help for us behind you on this road. I guess I am hoping when the time comes it all moves along quickly at the end - as it did for you - but I would prefer to be in Philadelphia.
Thank you, everyone, who responded with such kindness to my post about Sandy passing away. It's been four days.
I've had many tasks to do - paperwork, etc. It's hard to focus. I've had some tears but mostly I just feel dull and stunned. I am missing Sandy so much already that I'm worried about how bad it's going to get. I think I'd love to have him back to do more caregiving...one more day. ..I think. I feel bad because I did not want this to go on until it wore me out. It didn't.
And, the weather is about as gloomy as it gets. Non-stop pouring rain. Just stop already.
God bless you too, Joy. You are right, it will take time to sink in, if it ever really does. But when you feel bereft, remember the good times and your lovely life together.
It does help.
Take care of yourself here and remember that Sandy is in a better place, out of reach from the ravages of PSP. X
My most sincere condolences to you Joy. Sending hugs and prayers for Peace to you and your family. It is near 7 months since my husband passed. Recovery for caregivers truly takes time. Be gentle with yourself this holiday season. 💕 Kathy
My sincere condolences to you in this profound loss, Joy.
Like you, I expected my husband (CBD) had at least 2-3 years left when he died suddenly. Even though we seem so prepared on this site, I was still horribly shocked. As much as I still grieve the loss, I would not will him to suffer this disease longer.
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He left us before we were ready
Progressing fast
The final days
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