Husband now in bed permanently
By suspenseful
@suspenseful (40193)
Canada
August 4, 2010 3:06pm CST
A couple of weeks ago, my husband had to get his power wheelchair fixed because one of the speeds was very jerky and it was also on the day he had to see the als doctor at the hospital. Well the doctor noticed that my husband was not as good as the last time, and he told us of some signs to watch for. Well my husband 's tongue was not working as well, and my friend the nurse found that he could no longer put his head back or his tongue would go into his throat and choke him. Now my husband was to stay in bed, he gets very tired, and is now taking Tylenol 3 plus anti anxiety medicine.
Plus it is complete tube feeding from now one.
Now I have to look for a plot and make arrangements for the end when it does come. Luckily they accept Mastercard and I have money in the funeral account.
But what bothers me is that neither the doctor or the nurse will give an estimate time of when the end comes. I know that in the movies they usually say "well he can go anytime, 6 months at the most," or something like that, except all they said it is either days or weeks.
Now my husband has made his peace with God so that is no problem.
But well I would like a nice funeral for my husband when he goes, so I was wondering for those who have family with als considering how long after complete tube feeding, and when the tongue no longer worked, did the end come? A general estimate as I do want to make sure he has a nice funeral and not look like a cheap skate.
4 people like this
7 responses
@carmelanirel (20942)
• United States
4 Aug 10
Oh I am so sorry suspenseful. I don't know about als, but you have my sympathy and prayer as you go through this time..
1 person likes this
@carmelanirel (20942)
• United States
5 Aug 10
Oh, that's got to be hard for you..I am still praying..
1 person likes this
@suspenseful (40193)
• Canada
7 Aug 10
It is hard because I worry that I will go to sleep and wake up and find that he ha stopped breathing. We had the doctor come to our house because my husband is on palliative care, but my husband had been prescribed medicine by the palliative doctor but when the visiting nurse phoned to renew it, the pharmacist would not accept it because he was not one of my husband's regular doctors. Thank goodness the regular doctor who was there for the home visit wrote a better prescription - several in fact. So now my husband is sleeping peacefully or pretending to. He does that sometimes. And thank you for your prayers. 
1 person likes this
@carmelanirel (20942)
• United States
7 Aug 10
Make sure you write down the name of that medicine so when you need more, you can request it instead of the other stuff..And even if he is pretending to sleep well, that means he is still strong enough to consider your feelings, I think that's good..
1 person likes this
@funnysis (2619)
• United States
5 Aug 10
I know it is hard for you but you can never guess when the end is going to be with my mom she was feeling fine and an hour or so later she had passed away,so there is no telling when his time will be here only GOD knows the answer to that.I am so very sorry to hear that things have gotten worse but understand it was going to happen,I wish you well my friend and please kep me updated.Thank you and have a great day.1 person likes this
@suspenseful (40193)
• Canada
8 Aug 10
My husband got it about a couple of years ago . I do not know the exact time but it was when we were working on the basement and soon after we bought the stuff for the shower. My oldest sister in law had it for eight years. Apparently there are different types
@Thoroughrob (11742)
• United States
5 Aug 10
I am so sorry things are going downhill so quickly. I am sorry but I don't know the answers to your questions. Just wanted you know that I am thinking of you, and my thoughts and prayers are with you.
1 person likes this
@Thoroughrob (11742)
• United States
5 Aug 10
Be sure and take care of you too! I know it is hard, but you have to. It is so hard to care for someone when they feel so helpless too. I would call the doctor and ask your questions, they should be able to give you some outlook on things, especially if your husband is not sitting there.
1 person likes this
@suspenseful (40193)
• Canada
5 Aug 10
Thank you. It is that things are up in the air right now. I cannot leave him but for only a few seconds. Right now I have the closet open on both ends so that I can see if he starts gasping for air or something. But that also means all the clothes are squashed. I wish I had an estimate of the time, so that I can know how much I will need, but it is so sad.
@CoffeeAnyone (3210)
• Canada
8 Aug 10
I have avoided reading this discussion since I first saw it listed. A sick feeling in my stomach comes just reading the title. I don't ever want this to happen to my husband and I can't imagine anyone having to watch their love one go through such an ordeal. Yet I know this is a part of life. A part we can not ignor or run from. I have read your discussion and I am encouraged by your courage and your love for you husband. Like you I find peace knowing your husband as made peace with God. I am so glad as now I know all is well with his soul and yours knowing you will meet him in heaven again one day! Hugs to you both!
1 person likes this
@dragon54u (31634)
• United States
12 Aug 10
I am so sorry to hear this, although you told us all that it would come at some time. I'm behind in my email or I would have replied sooner. I have no idea when those symptoms indicate the end might come but I'm sure you can go on an ALS support message board and find out from others who have been through the same thing.
I know this must be a very sad time for you. You and your husband will be in my prayers.
1 person likes this
@badkidboy (4)
• Thailand
5 Aug 10
I feel sad when I read this discussion, may be they feel satisfaction, but life is so.
1 person likes this
@DCMerkle (1281)
• United States
5 Aug 10
I'm so sorry to hear about all that is going on for you. The last bit of time that you have left with your husband shouldn't be so stress filled, but do what you can so you can spend the time with him. With my family, my mother in particular, we all knew that when she passed on there would be no money to have the burial that she deserved and she knew it to. So, years before it really became an issue she had her body signed over to the State Anatomy Board. It was on her driver's license. When she did pass, her body was taken and used for science. The Anatomy Board will then return the cremated remains back to the family. It still leaves the issue of the final arrangements for you but, being we had her remains in an urn, we spread the remains over the ocean. It was in Ocean City, Md. It was her favorite place to vacation when we could. This might be something that you could consider. It'll save the issue of the finances for you and the family.
