Hey girlfriend, you are constantly in my prayers and thoughts. I also cried when I read your original posting as to Bill's condition. Itsn't it amazing how close we all feel. I could not hurt more if it were a "blood" relation who was suffering. You and this group are closer to me than anyone else. We understand what no one else out there can. Thank God we have each other, Thank God, Joan had the good sence to put this site together and the big heart to keep it running. I love you, Take care, you know where to find me, S
Things are not going well. Daughter, Joyce and I were greeted by the hospice nurse before we could visit with Bill. She puts him on supplemental oxygen when he can't breath easily. He is on thickened liquids to try to keep him from choking and aspirating. Also has him on bed rest too much of the time. While we were there at least he opened his eyes and looked at Joyce. This is a very long goodbye.
((Bluedaze)) I read this when you first posted and I have been trying and trying to think of something positive to say, some way to offer you comfort..... I can't. I am so very sorry you and your loved ones must witness this long goodbye. I pray Bill has no pain. Keeping you in my thoughts and prayers. ((hugs)) Nikki
So sorry too Bluedaze, the pain of the off/ons better/worse seems to be the bitter part of end stage. i am praying for your Bill and you to ease his sufferings and yours. divvi
Bluedaze, there are no words to express how much I wish I were there to hug you and support you, and hold your hand. I can't imagine a more devastating feeling than having our husband be so close to death, then rally for a time, then slowly go downhill again. Your emotional roller coaster ride is horrendous. My thoughts and prayers continue for you and Bill and Joyce. If you need anything that I can do long distance, please let me know.
Bluedaze, I feel your ache and painful heart. I wish I could find the words to bring you comfort. You know that we are all here for you and will be anxious to read your updates. In the meantime, if there is something any of us can do, please ask. All my prayers are with you. Kathy
Nora, posted yesterday but must not have hit the "add" button. Your roller coaster ride just goes on . . . and on . . . and on. What a merciless trip. Prayers for all of you.
One of the previous comments said a verse was " you will pray for death and death won't come". I truly know what that means after 18 yrs. of this horrible disease, 7 of them in the nursing home. I keep asking fruitless questions-Why does this go on, what possible good is it doing anyone, and then the same answer-that is life. And then I cry. Had thought I didn't have any more tears to shed. Sometimes I feel as though I'm the only one that knows he still exists. I was gratified that his sister who had not seen him in 7 yrs. came this summer and we travelled the 130 miles one way to see him. No recognition on his part. She said he looked the same only 7 years older. Thanks for letting me get this off of my chest. My prayers are with all of you. This journey has got to be the most difficult one anyone has to make.
Clare-thanks for asking. Bill is stable which is all I can ask for. Friends not doing well. One remains on a vent and I'm afraid another may be heading that way. As the season of our high holy days approach I am heartbroken because of all the sad things that have happened. Have to work real hard to find things to be grateful for. Friendship of people like you is one of them
Sandy - since your husband and my FIL have gone way past the 'normal' for this disease, makes me wonder if for some people the disease comes to a halt and then we just wait for the rest of the body to wear out? Just a thought.
It is so difficult to realize that I first asked this question on Dec 22, 2008. People new to the group often ask how how rapid the progression of the disease will be. The answer-who knows. My husband has been on hospice for three years. No recognition, independent ambulation or any ADLs. This morning began with a phone call from his facility telling me that he was in severe respiratory distress, B/P and pulse elevated and color dark blue. We put him on oxygen and are trying to decide what to do about antibiotics. Bill most likely aspirated some food yesterday. I walk around with my cell phone in my hand so I can reach it quickly. The hospice nurse and I had a long talk about treatment options. At the time of my visit he looked comfortable. Of course he remains non-responsive. I am thankful that I have a medical background which I hope me make the dreadful decisions that must be made. Thank you, all my cyber friends for all of your support.
Oh Bluedaze.............I have been where you are. I decided on no antibiotics and he lasted 2 1/2 more weeks, resting comfortably and he quietly slipped away. I just couldn't save him for more of the same....my husband was in exactly the condition your dear man is. I am so sorry you are facing these decisions...they are not easy. Big hugs....
My mom went through phases like this. At first the foot would get that bluish look, then it would fade away. Later her feet and legs got that tea dyed egg look, then that would go away. Our nurses gave me instructions and hospice gave me a booklet on the final days and hours. As I was reading this,my mom moved or did something and when I moved her back into position, I noticed that just under her shoulder she was blue. Talk about an Alrighty Then..I just blurted out, " Mom, what are you doing, demonstrating !". I was so shocked at how quickly the condition changed. That said he stayed around in a comfortable state. At one point I felt my dad should come in to be with her. Her breathing was so different. He did and his surgeon instincts came into play. When we were sure she was breathing her last, he had the aide get a wash cloth of cold water, wring it almost completely out but not all of it. She came back with it and he wrang the rest out over her forehead. When she winced, dad said, no she is with us. I'll never forget that. The next morning she took flight, her last breath was so gentle and soft, in the end it was really peaceful for her and her long sad journey was done. We however began another long journey of healing.
The compassion shown by people I have never met on this site is so comforting. More than makes up for those who choose not to respond. We all face the same end.
Oh Nora, I'm just catching up here, I am sending you hugs and love. You and your Bill are being lifted up in prayer. I hope you find some strength and comfort in knowing how much we all love and respect you a caregiver and as a friend. Arms around, Susan
bluedaze, I am so sorry to hear about what is going on for you and your dh. We will keep you and Bill in our prayers as me and my dh talk about the spouses and caregivers every time I get off this site. He may not remember for long, but he knows I find peace and comfort here. We will pray for peace for both of you and that time will be on your side to make this easier for both of you. God Bless and keep you and Bill.
Nora, I've been away from the boards for some time and noticed tonight the * by your name. I've been going back through the posts to find out how and when. This is the nearest thing I've found. Your DH is apparently free now from this disease after a very long time in end stage. I hope you're doing ok and thank you for staying with us. We need you.