I thought I was one of the "new kids" on this website, that I was just getting started - sort of. Sandy is in his final decline, with no plateaus this time. We got Hospice on November 26 and I thought that was very nice of them to offer it "early." Little did I know that we would need a visiting nurse two days later on Thanksgiving Day, and then head right in to this new phase.
Just yesterday it seemed like we may have 2-3 months. Things seemed to change overnight. The Hospice nurse said today that it would be weeks or less - that it could change at any time. He is heading toward what they call "transition," the stage right before "active dying." All of these categories are mind boggling.
It feels surreal. I was supposed to have my desperately needed break Dec 17 - 22 where Sandy would go to the Hospice facility and I was going to visit friends and have a good rest. Well, I guess I am going to get that rest, a good long one, sometime soon. I think often of Jeff being knocked off his feet when Larry went to respite care and then passed.
Here is what I see as the blessings here: Although this disease has been wretched, he is bypassing some of the awful symptoms. His swallow is getting worse but he's still able to eat (spoon fed and he's really not eating very much now). His mind is clear and sharp. He can still communicate although sometimes I have to put my ear right up to his mouth to hear him. Other times, he can talk clearly. He seems to perk up for a couple of hours each day and then go into a dreamy on and off doze.
We are having a big family party on Saturday, if you can believe it. He still wants the party which is actually good. All of the family will be able to see him one last time. Our son who is out of state will be here Saturday and will come prepared to stay through the week.
I am rejoicing for Sandy. He will no longer be trapped in this useless body. As for me, the part that really scares me is how quiet it will be. I can only imagine.Other family members are shedding tears. I just feel kind of numb.
Love to all you people.
Joy
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journeyofjoy
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Dear Joy. I was hoping that I would not be the first to reply but it seems that I am. I am so very sorry to hear your news and of your feeling of disbelief and shock. It is so fortuitous that you are having your party on Saturday: Sandy can be with the people he loves and they can be with him. It will be very, very special time and give you some lovely memories to hang on to in the future. Don't worry about not shedding tears. Everything is all so surreal that it's not surprising that you feel numb. It's a sort of coping mechanism and I know that the numbness will be replaced with love and laughter on Saturday. 25 years on I still smile at the thought of the day we all had together with my first husband three weeks before he died. I wish we could have done the same this year with Nigel. My love and prayers are with you. AliBee xx
So sad to read your post, so wonderful you are having your party, give everyone the chance to meet up and have a good time, thinking of you all at this sad time. Hope Sandy has an amazing day, which I am sure he will, stay strong lovely lady. Big hugs to you all. Yvonne xxxx
Your story of Sandy going into hospice care sounded oh too familiar. I suspected things would take this turn. I knew on one level Larry was dying. I was not seeing it on another. The hospice people knew.
Your hospice people will make him as comfortable as they are able to.
After Larry died I found relief was what I felt the most. His loss now makes itself felt when I least expect it. That is going to go on for some time to come.
It is good that the family will all be around this weekend. Sandy will enjoy that. Hospice was of great help when the time came to make him comfortable. I think they were involved for the last 3 weeks.
I am so very sorry for "hope" being snatched away.
Prayers and hugs for you, for Sandy, and for those who love him.
It has been 2 years and 7 months since I lost my son. There is still deep sorrow for the loss of his presence, but also relief and joy for him NOT experiencing the suffering.
I wish you a GLORIOUS happy gathering/party.....a goodbye and celebration of life.
Somehow you’ve managed to word everything perfectly. I love the blessings that you see. You have described many things that we are going through right now, especially the “perk up for a couple of hours each day and then go into a dreamy on and off doze”. I also tell myself that we have months and even years left. Your post has sent me a wakeup call. Thank you for the beautiful description of how you’re feeling and what you’re going through. As awful as PSP is we have precious memories to fall back on. I’m out of words now 😢
I am so sorry. I cannot imagine how you must feel seeing him in the final stage. How wonderful that you will have all the family with you to help you and support you.
Sending love, it must be heartbreaking hearing this news from medical professionals. Amazing that he's still up for the party and shows what a strong character he is. Feel blessed that you have shared your life with this special man.
My heart goes out to you it is a journey of very mixed emotions, stay strong for now and collapse later and enjoy every moment of your time together and just be together, leave others to do everything else. Sending you lots of love and hugs
I’m so sorry . It must be difficult coming to terms with such a sudden decline . As you say though he is missing some of the long drawn out stages and suffering . I hope the party is a wonderful occasion for you all
I am going through the quiet phase Mary having passed a month ago. It gives time for reflection and grieving. I am fortunate in having friends nearby and some of Mary's carers came last night to decorate the house for Christmas. Don't fight the grief when it comes. Rob
All my love for what you are going through. Going ahead with the party would be my choice too. There will be time for sadness later. For right now help the attendees understand this is a celebration of life and to tell the funny stories only. No crying on Saturday.
Sorry to hear this. PSP is truly a monster. Reminds me of my wife in her final days, losing control over her hand movements and failure to recognise our own daughters! And such laboured breathing! Until finally I reproached Yeshua for letting her suffer like this. I had been playing the Jesus Chant that morning, when she jerked at the first line of the song! True enough, within seconds of the prayer, she gasped twice and lay back still, and she was gone with the Lord! This is how horrible PSP is - and there is no remedy! Hope your husband's future is more pleasant.
I am currently experiencing exactly the same thing as you. Jan would go to a nursing home for a week next Monday to give me some rest, but now he is suddenly admitted to the hospital with acute kidney failure. It has nothing to do with the PSP, but if the kidneys do not function better, dialysis comes in and we have to decide whether that is still useful for him. He already has so many complaints from the PSP that we may wonder whether the quality of life is still such that we should want to put him through such a tough treatment process.
What a wonderful approach you are taking to this. As painful and heartbreaking as this for you is I am very touched by your grace and compassion. Very inspirational to people on this journey with you. Sending you and Sandy my warmest thoughts.
So sorry to hear this. The unpredictability and differences this disease exhibits make it that much harder to anticipate what is going to happen. Sending much love to you both xxx
Joy, your strength and wisdom do not fail you now. As stunned as you are, you can find the blessings and opportunities in this final phase of a devastating condition. Prayers for your continued strength and the loving energy of your family this weekend to lift Sandy's spirits and your own.
Hi Joy, so sorry to hear this. I know what you mean about feeling numb. Will passed away 1wk ago and that's how I'm feeling. I'm lucky that my daughter is still with me and her husband and grandchildren arrive on Sunday. It will be a noisy Christmas, but they leave on 28th and then I will be hearing that 'silence'. A new chapter. Will be keeping you in my thoughts.
You have given us all here such a delightful snapshot into your love for Sandy over the last months, and whatever your journey has been, know that it has lifted our spirits and touched our hearts.
I pray that this stage with bring you and your family even closer this season and that there will be a beautiful peace and rest which speaks volumes to those around, with or without tears.
Dear Joy -- I'm so sorry to read of the difficulties Sandy has experienced in recent weeks. I hope you have a wonderful family gathering, and that Sandy gets a few good hours that day to truly enjoy it. Thinking of you.
Dear Joy, your description of how Sandy is reminds me very much of how my father was in his last week. Still able to communicate up to the second last day and none of the terrible choking or coughing that he and we all feared the most. I hope that Sandy has a lovely party and when the time comes he will slip away peacefully with his happy memories. For you there will be so many emotions but I am sure that you will cope with your family and friends around you. My thoughts are with you and Sandy, Caroline
Hugs to you, Joy, as you enter this whirlwind that is the transition and the end. It will all seem very unreal. How can it all have happened? How can it be ending so quickly? How can a beloved person not exist?
We understand, and we send love to you as you move through it.
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