My poor baby is in the end stage. He hangs on to nothing just for us. He is gasping for air and breaks out in cold sweats and holds onto my arm for dear life. Hospice has given me morphine. I know of I give it to him his breathing will ease and he will very likely die. This is difficult. Anyone else been here and did it go? I am sad and afraid
Difficulty breathing and cold sweats - PSP Association
I am so sorry that you both have to go through this.I too am in the very difficult position as the carer.All I can say is,do what is best for your husband that is the priority,however hard or painful for you,ease his suffering,he has had enough and that is no way to die,gasping for every breath and probably frightened how long it will take and how it will go.Of course you are sad,it is the letting go that is such an overwhelming thought and frightened for the future alone.You will not be alone,just without him..Strength for the next stage of this dreadful dreadful journey and bring him peace. We will all be in your position in the future ,with those we love and care for.......so please do not feel alone.We all share your sorrow,you have already lived with the hardest thing in the world,watching someone you love disappear in the most awful manner,you were there for him and stayed strong.Now you can do that too.....
hi there my husband was the same as yours at the end please dont let him suffer any more i was with steve for the last 4 hours the doctors administered drugs as his breathing was stressing him he was in a cold sweat as well i lost steve in february and i miss him every day but im relieved for him that he hasnt got to suffer any more please stay strong xx
I am so sorry you are going through this, but I agree, don't let your husband suffer, give the solution back to your doctor or the hospice, they are the ones who should be helping you now.
When my mother was dying from cancer over 40 years ago, her doctor came, was with her for a short time and when he left told us that she would not suffer anymore, my mother died soon afterwards. Despite our immense sorrow, as a family we knew it was right for her.
I am sure that, like us all, you have cared for your husband to the best of your abilities, take comfort in that.
much love - we are all with you
I know this must be such a hard decision for you but I agree with the others. The kindest and most loving thing you can do for your husband now is to give him the drugs that will relieve his suffering.
Just know that we are here for you, some have already been through this stage and others still have it ahead of them but we will all listen and will be here when you need us.
Have courage, be strong. You and your husband are in our thoughts
lots of love to both of you
Hi Judy....I feel for you greatly as you have such a tough decision to make. You really must do what's best for your husband. Although it's hard, you need to let him go & find peace. The decision was taken out of my hands as Frank had made an Advance Directive a long time ago. I adhered to all his wishes which was hard but it was what he wanted. As Kathy has said, have courage & be strong. Easier said than done, I know. We're all here for you.
Take care Love Hazel B xx
Hi Judy - I am too sorry that you have endure this as I did this past January. I had many back and forth disagreements with Hospice in my dad's case. Several times they told me he was going to pass and he didn't - -my dad was on morphine for quite a while (months) before he passed - we used morphine to help open the lungs for breathing as his lungs were filling up with fluid and antibiotics were no longer working. At times Hospice made me feel like I was cruel for treating him but that's what my dad chose -to be treated and he could no longer tell me if he wanted to be treated or not so I had to follow his directives that he set forth. They made me feel so bad that I turned to our priest for guidance - his guidance helped me so much that I want to pass it on to you. He said that a debilitated life is still a life worth saving and it was my job to continue to treat my father in the manner that he chose, however, when my father begins to actively die then it is my job to get out of the way, not interfere with the process but help my dad and allow the good Lord to bring my father home. I saw a change in my dad - I can't articulate what the change was but it was there. I told hospice that I thought my dad had 2 -4 weeks left. 2 1/2 weeks later at 6pm on a Saturday night my father's temperature shot up to 105.2 and his respiratory rate went up to 40. I knew we were there. There was no question. I stopped nutrition and hydration and started morphine in higher doses more frequently to help ease the breathing and to aid in the passing process. My father was not in pain and he passed peacefully. Like you I thought it was going to be scary but it really wasn't and my dad wasn't scared - he was ready. I guess what I am trying to say is that you'll know when it is time.
I wish you and your family much love and I pray that you will have the guidance you need to get you through this very tough time.
Danielle my dear sweet friend thank you for sharing because what you said made perfect sense. I too have turned to my church for guidance and I was given the same advice which I can find comfort in. Hospice is encouraging the morphine at low does. Will this help my husband or make his body slow down and further succumb to this disease? Thank you for your help.
Thank you Jill. I have tried to give him the morphine but he puts his hand over the feeding tube and his mouth and I believe that he is telling me not to give it to him yet. I do hate to hear the suffering but I need to honor his wishes. I believe that he is holding on for my daughter. She is only 20 and cries when he tells her that he wants to go home to God. I have told him to pass on whenever he is ready. He has been trying to tell me that he wants me to stop feeding him in two months. I finally was able to figure out what he was trying to tell me after many days. I have spoken to my daughter regarding his wishes. I think that she needs to tell him that it is okay to leave. I will be praying for you. Love Judy
Judy, My wife has PSP and I lost my first wife (after 31 years married) to CJD (Cruetzfelt-Jacob disease) another brain disease. When her breathing became difficult one night and she was struggling I actually prayed and asked God to not let her suffer like that. Within 5 to 10 minutes she was gone. It may not be the right prayer to make but I felt led to make it. So this isn't my first rodeo (as they say) with an uncurable brain disorder. My current wife and I have been married 23 years. I'm sure this PSP journey will not be easy for either of us but we will endure it together.
Hi Jim, I have prayed this for my dad. I pray for healing for my husband and ask God to take him home if it is His will to do so. I can totally understand your prayers and I know how difficult it can be to feel this way. I am so sorry that you are going thru this again. Dave and I are young but we have been together for 32 years. I wish that he would accept the morphine. I think that he is hanging on for my daughter. This is such a cruel disease. Take care Judy
Thank you for all of your answers. I keep reading them and I know that I want to give Dave the drugs but he has put his hands over his mouth and his peg tube when I have asked him if he wants the drugs so I must assume that he is not ready. I wish that I could help him. Please pray for him that he will not suffer and that he will be okay to let go of this awful suffering. He is so young and his body is strong and he could hold on for a long time with this breathing difficultly. Has anyone seen morphing them to breath easier. Perhaps if I can read your messages to Dave he may be willing to take at least a low dose of the morphine. I so want to give it to him but I need to honor his wishes. He has been told that the morphine will end his life and I think he is afraid and that is why he is refusing the drugs. Any advice that I can share with him would be helpful. He still hears everything that I say but he cannot speak and can bearly move his body but he can put his hands on his mouth and peg. I will read your answers to him. Thanks and lots of love,
If he does not want the drugs and peg tube. Don't. I know this must sound cruel, but what I saw was this was my brother's independence. He did not want drugs, when he normally would. He just wanted to be clear not drugged up. I asked him, you know this will be hard, right? He said yes. If it gets too hard and he wants the drugs he will ask in his way. You will know. My brother could not speak or move either. We ended up with blink once for yes, twice for no. Another thing was he would wiggle his foot. Maybe try that.
My love to you both.