You never know. I thought Joe would be gone by the end of the year but now I question that. I've made funeral arrangements - that was hard but didn't want my sons to have to deal with that. By the way, this is not my first time with ALS. My stepfather passed away in 1992 from ALS. He was so far advanced, he passed away after four days in the hospital. We found out he had ALS when he was dying. We all thought he had cancer. As you know it takes months to diagnose this disease. When he found out it was ALS he tried to stuff a wash cloth down his throat. That has taken me years to get that vision out of my mind. He knew what kind of life he faced.
I agree so much with you. When he decided on the trach, he told me he just wanted a couple of more years to live. This is NOT living. We have a plan in place with eye blinking to tell me when he has had enough. The only thing that gets me through this, is I know he will be in heaven. That brings me great comfort in this time of despair. Has her dr given y'all a time frame? Ours has not. I hope this does not go on for years........
Thank you so much for response. It sounds like we are in the same boat. I wish it were a cruise boat going somewhere. Any where....the only difference is my husband is on a vent. When we started this journey/nightmare, he was adamant that he did not want a vent, unfortunately he changed his mind. I asked him one day if he had to do it over would he be vented. He said no. There are many people that feel differently. I would advise them to come and spend a week with me. Forgive me for asking this. Do you ever just want it to end? Joe is a prisoner in his own body now and miserable. I have come to terms with his death. Hope I can remember the good memories when he is gone and not this hell we are going through now.
Hi, my name is Debbie and I was wondering what the last stages of ALS is for you and your wife. When my husband was sent home from the hospital in March of this year the dr said "He is at the beginning of the end" I was in such a state of shock. I didn't have enough wits about me to ask what does that entail? He is on a vent, peg tube and bedridden. I know it will get worse and that scares me to death. Watching him die a little each day is worse than loosing him all together. You seem to be well versed in ALS and have a lit of insight. Thanks
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Hello Bowser Thank God for people like you. The help you give is wonderful. Your wife knows just how special you are. My husband is taking of me also don't know what I would do without him he is awesome!!!!! Ruby
This is a common occurrence. Don't let it bother you, your post will more that likely show up in a day or two. I think there must be a 'program' that sends posts to moderation. It is just a built in protection thing to avoid 'trolls' posting unsavory things here.
I know your post was not unsavory, it is simply one of the 'characteristics' of these forums. Don't get frustrated, don't go away. We only have one moderator, and he has his hands full trying to watch out for everyone. It happens to us all, even the most senior members at times. Be cool, it will be fine.