I just finished reading Julia's notes about her husband's passing. First, Julia, I am so sorry, and also relieved for you. My husband has suddenly taken a nose dive; things he could do last week he can't anymore. Things he could do yesterday he can't do today. He still feeds himself and shaves; other than that I do everything for him. He is more lost and confused every day and I know worse things are coming down the pike. He had a lot of choking issues and today we were at the doctor and he mentioned a feeding tube when the choking becomes too severe. I already know we won't be doing that, but I am afraid that his ability to swallow might be one of the first necessary bodily functions that fails. Then what? What if he can still smile? What if he still knows me? Ach...so worried and afraid. Thanks to all for listening. I think I will probably be on this forum a lot more as time progresses.
The choking issue was one we faced with my mom and later, as you say, the swallowing became and issue. It was in her advance directives that there was to be no feeding tube and as hard as that was for my dad, being a surgeon, he knew the risks with a feeding tube..infection at the site etc....so none was used. It was very trying on everyone but the nurses told us that at some point, my mom was in no discomfort from not eating..hard to believe...we just kept her mouth moist and lips from becoming chapped. As it is, even those with other illnesses, when the time gets close, they refuse to eat as well...I guess it is the body starting to just shut down. The only thing we gave my mom was meds for discomfort...she passed away peacefully at the end.
I was blessed not to have faced that particular horror with my husband.
Pamweibe, I am sorry you are reaching this decision making phase of this cruel disease. I know you are afraid as I will be too when my turn comes. Implant his smile in your heart and mind. If you know what his wishes are your decisions may be a tad easier. Just follow your heart about all medical issues. That is all you can do and do so without guilt. Hugs to you and we are all here to listen. We understand and we care.
Oh Pamwiebe, my heart goes out to you. It is a scary time, and all I can say is be there for him as much as you can, some things are out of our control. I was so scared of having to make that decision to let him go, but he made it for me, he just gave up and refused to eat . He seemed to be in no discomfort from not eating.....he was very calm and peaceful. Morphine was started, but he didn't seem to need much, we just kept his mouth moist and lips from becoming dry. We talked to him a lot as hearing is the last to go.....opened his eyes a few times as if he knew. I cherish those last few moments with him, having the kids there was a great support.
I'm able to talk about it now, as I know we did the best we could and I hope it helps in some way.
(((Hugs))) I know this is so hard. My DH stopped eating the two weeks before he passed. And then stopped drinking about a week later. I would moisten his lips and lay my head next to his on the hospital bed with my arm around his head. I had a chair next to the bed. I would tell him I loved him. We did have him on morphine. But I never saw any signs of discomfort, it was hard for me, as a wife and mother we always want to feed our loved one.
I am so sorry you have reached this point with your loved one. I can not imagine what it is like to see your dh being able to do so much but not being able to eat. My dh progressed thru his disease rapidly but at the end all he could do was smile, and briefly reach out to hold hands. As others have said, go with what you feel is right. You will make the right decision for you and him. My dh has not known me for approximately 3 years before he passed, and could not talk for the last year and one half. If I had to give you any advise it would be to record his voice, take pictures, make memories, and be with him as much as possible. I so miss my dh's smile and hearing his voice. The last two days of my dh's life we knew he was coming to his end soon. Those two days he could not get enough sugar from me. He wanted to hold our oldest son's hand as he sit by his fathers bed. He could tell we were hurting and concerned. How I wish he could have spoke with us. I held him, layed by him, talked to him, told him it was ok to go, that the kids were here for me. I told him anything I thought would comfort him. You will know when the time comes what to say and do. Know we are here for you and with you as this time gets closer. Hugs to you and your precious dh.