I am surprised you were able to get him into a hospice house. Most of the time hospice is handled at home, a hospital, an ALF or a NH. Good job, I would think the hospice home would be the best environment and I guess he gets full time hospice care as opposed to a limited number of hours a week.
I visit patients and family in the Hospice House where Sid is. Joan will have a comfortable place to rest and be with Sid in a peaceful and lovely place. If she wishes she can roam the beautiful gardens or visit with other families. Each two private rooms share a calm living room. There is a gentle energy that you feel as soon as you walk through the door.I hope all who enter find peace.
I am just seeing this...sending my hugs and prayers to help sustain you! You have given so much to all of us. This site is such a life saver to the caregivers who don't get much support anywhere else. I am so glad you were able to get him there. The Hospice folks are so very good at what they do. You are such a warrior for the love of your life!!!
Just checking in to thank all of you for your support. I have so many people calling and writing to help keep me going.
I admit that I never thoroughly read the comments made by those of you who chose to share the ending days. I couldn't bear to read it - much too painful. So I thought. I am finding out that the actual experience is worse than anything I could have imagined. Sorry to be so blunt, but you know me - I give the honest truth, no matter how unpleasant. Maybe someday I will write about it, but I can't imagine revisiting this nightmare again by writing about it.
Please know that all of your comments, emails, and texts ARE helping me drag myself through this horror. My counselor stopped in today, and as always, kept me from a total breakdown.
Bluedaze is right about the atmosphere here. Calm and peaceful.
Thank you again everyone for your support. I will update you when the situation changes.
It has been a long hard road for you and I wish you peace in the coming days and weeks. Knowing that change is coming but not knowing when is the hardest part of this journey.
Having just experienced "the ending days", I understand what you say. It is probably best that none of us really Can imagine what it will be like.
I feel the pain...what I can say is you will have the strength to get through it....you will be comforted by the Knowledge that you were there...you will know that Sid was comfortable and pain free. When it is over , a strange surreal feeling about the ending and even the funeral remains for me.
But, the actual ending experience is dull compared to my memories of him before AD. When I see him in my mind's eye, he is the Bob I knew..handsome and whole in body and mind.
Joan: Wishing you the ability to treasure, cherish these memories and strength to endure the ordeal... Like so many who have commented on pages preceding my post: "been there and done it" and still have a problem wrapping my mind around the blurred memories of those days
Roller coaster. The nurse was so sure that last night was the end that she sat with me, holding his hand. Then he stabilized again. I figure it's a toss up now as to which one of our hearts is going to give out first - his or mine.
Because he's so young, his body is holding on, God bless him. But you are young, too, and you will hold on, too…for whatever and whenever. I am still there, back in the corner in my folding chair. Thoughts, hugs, prayers, tears for you and with you. You've got what it takes, babe.
Joan, I think of you many time a day right now. And each time I offer up a prayer for you. I so wish I could do more for you. I know your heart is breaking. Wish I could help ease the pain. (((Hugs)))
Joan, so sorry for all your pain. Sid just doesn't want to give up. From reading all your posts over the years, it sure appeared that you both were fighters. I am confident you will find the strength to get through whatever comes your way. My continued prayers are with Sid and you. Kathy
Joan...this is such a tough phase..the waiting, I take it back tough is not the right word. Inhuman perhaps, but..really until you have gotten through to the other side and have some time under your belt, I don't think anything at least that I could say, would not come off like a platitude. It $!!**%% hurts so %$!))& bad!! So I will tell you a short story for me...I have written it before, but maybe you can read it now.
When my Dado passed, he had sepsis, so it was less than two days. When they told me in the emergency that if they tried to save him, he would be an even bigger basket case, and that I really should let him go, I SCREAMED AND CRIED AND YELLED AND SAID NO NO NO!!It was the very hardest moment of my life. Then..that strange bubble you had talked about, came over me, and I knew I had to give my all to him. I can barely write about this.. And the last hours that I had with him were so precious, and I was grateful it was less than two days. I had sat with my sister for 5 days waiting for her to go. When she finally did, I told her, thank you sis, thank you for us. We could barely wait anymore, we that were being left behind.
As I sit here writing this , I think of your cute little presence in our DC room, our sharing like two college kids, and of your willingness to accept what was happening after all the intense pain of having to place Sid. I was so proud of you then, and now.
I am so lonely without my guy, and if it was not for the slightest hope of some joy left, I could not go on. The first three months after he passed were torture. But there is some joy already, and there will be more. And I promise to be a very good friend to you, and do whatever it takes to help you, even if it means flying all the way over there. Anything. Hang on we do not want to lose you too, and please drink water and eat something. Love love love to you.
Ah, Coco, what a blessing we have met and become fast friends. I am doing the best I can, but I never expected it to be as bad as this. Thankfully, I have a lot of supportive friends and family.
And believe it or not, I am actually calm compared to how I would be if he were still in the NH. I don't have one single concern or worry about the staff or his care. They are superb. I only have to concentrate on him, not worry if they are doing the right things.
Joan Lost my honey three weeks ago today. Your experience sounds so painfully like mine. He stopped eating and drinking on a Monday and passed Sunday am. I stayed by his side through the nights...holding his hand , rubbing his forehead Telling him I loved him but that everything was okay and he could let go. Listening to him struggle for each breath And hardly recognizing his frail body , I began to pray for him to stop breathing and pass in peace his last night. You will get through it! It will feel surreal. It was like I was watching a nightmare. I was numb at times. I cried at times. I hugged his body, I laid my head on his now bony shoulder trying to remember the comfort that once was. I told him all the stories of our good times. I don't know if he heard any of it. He has not responded in months. But I still kept talking and comforting him. I was alone with him in his room before morning shift when he stopped breathing.i just lay across his chest for what felt like the longest time. I didn't want anyone to intrude on my last Moments with him. Then, the next shift opened the door.
Joan..Hold on ...tell Sid anything and everything you want,,hold his hand and just be there. You Can Do It! You Will Get a Through It! You are stronger than you think ! Hugs and prayers for ou and Sid.
Lorrie thank you for helping me remember that. I too told Dado little stories, remember when type and I told him all the great things he did in his life.
Joan, yes my dear you will get through it. What has helped me is my deep faith and the knowledge that death is part of life. It is about six weeks for me. What helped me was the superb care hospice gave him and allowed us all to say our good byes. Also meeting with hospice after has also helped. My prayers are with you.
Just stay by his side. Stay close so you can touch him and talk to him and let him know at whatever level he can comprehend, that you are there. When he came in to the world, it was his mother who was so close, to love and comfort. Now that he is leaving it, you are the one who has the important role, the loving, comforting role to be there until the end and to watch over him and support him as he makes his final journey. Hold on, and hold him. You Can Do This!
I cannot say enough about Hospice House. They have taken all of the stress and worry about his care away from me. In the NH, I had to be on them constantly, and the level of communication was......Well, I'm not going to go into that now. Just to say that the caliber of staff here is so superior to that in the NH. Everyone has the highest level of education and experience. It's unbelievable.And true compassion.
Thank you for your support. I'm trying my hardest.
Although others may disagree, I believe they know that we are there. So glad you are both in a calm place now. How does one get through it? I only know that life goes on, whether we want that or not. And with the inevitable, comes a certain relief. But we never forget, and in time, it takes its proper perspective in our life. We learn to live with it. Blessings to you both. Betty
I am checking in with a little sense of trepidation. Yes, it was a slow process. In the final days I was blocking it, in my inimitable way, while the others around me did the emotional work. Still, 2 years later, letting it all work its way out.