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  • We moved to Arkansas in retirement shortly after the wife was diagnosed. I thought the progression would be much slower and we could take many trips back to MN and when she progressed, stay in MN.

    Well, we bought a house here and it just progressed way faster than we expected.

    The adult children have made the 850 mile trip down here 5 times since Jan of 2012.

    The low point came in early July when Margaret suddenly lost more lung capacity and became too weak to sit in a wheelchair and became bedridden 24/7.

    Three of the adult kids drove down on a Sunday night and said their goodbye to Margaret.
    However, although we were certain she only had days, she is now on a 4 month plateau. She will never get better , but there is no room to get worse and live.

    Despite Margaret having no pain and being in a good mood, we are actually looking forward to the Lord taking her.
    Being totally paralyzed ,unable to speak, with no chance of improvement............isn't much of a life.
    My wife is bedridden 24/7 and totally paralyzed.
    She is on oxygen but can go w/o it for short time periods.

    We communicate by me asking questions and her SLIGHT nod of the head.

    She was diagnosed in March of 2011 and had a SLIGHT speech problem. Her limbs were still good.

    She went to visit her son in Michigan in June of 2011 on Amtrak from innesota by herself. She took a cane with and an ipad .

    The stages of progression have been steady since then.

    cane..........walker end of 2011.............wheelchair summer of 2012............bedridden July of 2013
    When she does this she turns purple her face but I check the vent and I check her pulse and her oxygen levels and everything is fine. I wonder if its another reason like something with her lungs
    Hello there I was able to takr my daugjter put ladt night to eat I was so tired omg. I think my mom has a cold noy sure but she has so much mucusIits coming out of her mouth her trach its alot but its clear and no smell to it. I will call her respiratory therapist tomorrow. The people from hospice never called me to give me the official no and I haven't heard from my mom's np either. Its so truw what u said once u mention vent no one wants to help. My mom does this thing with her mouth sometimes as if she is gasping for air but im unsure y she does it I check her oxygen levels and they r normal
    Because I need to take it and get a passing score if I want to be accepted for September 2014. I have almost finish the college credit part of the program but the nursing classes are taken at a hospital not to far from where I live. I sometimes think I shouldn't make plans to attend in September 2014 because if im still taking care of my mom it will be too much for me but then I think that I need to finish school because I need to be able to get a job one day
    Hey there been a bit busy I spoke with one of the nurses who does wound care and she told me that she spone with the hospice intake nurse and that they r not going to be accepting my mom into their hospice program their reason is because of the vent and tube feeding. This is the 2nd timemy mom Iis referred to hospice and they do not accept her. I dont feel like im gonna pursue this option any further. I thought they could help me but it seems like a headache. I think they r worried my mom wont progress and they can only offer hospice for a year. Im gonna just keep taking care of my mom the best I can like I have been doing... what do u think.... how is ur husband feeling and how r u did u get out today... I haveto start sstudying more for the nursing entrance exam
    He started crying this morning because I couldn't understand what he was trying to say. So sad my heart breaks for him. Days like that I just wish it was all over- it's just going to get worse.......
    I can't remember if u told me or not does ur husband communicate with you. I know u said he gets anxious. Its really hard when they cant communicate
    Hey how r u. How did the trach change go? Did they change ur husband pain meds... I called the np told her that hospice had not contacted me yet. She said she would check with them today......
    Hi hope all is well... I was able to make it to church on Sunday..... I have been waiting for hospice to contact me and my mom started taking percocet last friday which seems to only work for three hours.... how is ur husband doing and how r u feeling. I was up every 2 hours last night had to keep suctioning my mom.
    You are a very strong woman for speaking up against the vent. Trust me - it is a living hell! I would never encourage someone to be vented. I feel like I am trapped along with him in this nightmare. Thanks for listening.
    I actually told my husband that I can not stand by him if he gets a vent. I know a woman locally who's husband got one, and she said her life became hell. He still passed after about 2 1/2 years. I told my husband, that I just can not do what that requires. he said it wasn't a problem because he doesn't think he will ever get that bad. (LOL funny, our ALS clinic actually discourages vents because of the work and care involved.
    I think my husband is extra demanding because he feels so helpless, and it is a way for him to control something in his life--even if it is just me. makes me crazy though to be micro-managed. Hang in there!
    Hey Debbie, so sorry your husband is miserable. he is tired...Why did he decide on a vent? My husband has a lot of love of life and fights everyday. he has refused a peg and a bipap. He was very unhappy and sad at first, but as time passed he bounced back. He thinks he will not die--

    I am glad you got out of the house. It is very important for your mental health. I do it too,, but it just never seems long enough and when I get home, he is extra demanding. are you able to get the CNA to come every day? I have on m-f from 9 am to 2 pm so I can go to work. she feeds him and bathes him and that is a big help. my kids take over in the afternoon until I get home.
    Hi Debbie, I can so relate to how you feel. I think when you have 15 posts, you can send private messages.

    I am so torn with my feelings right now. I feel so empty and worn out--I am so tired of giving and giving and never receiving. I can't remember the last time I felt like someone was loving me and taking care of me. Then I feel guilt for feeling that way--he didn't ask for ALS...

    yesterday I met a woman who didn't know about my family situation and she was telling me about these fun things she does for herself. I told her my husband was sick and I could not do the things she does, and she said well, you only have one life and you need to live it. really upset me--she has no concept of what it is to be a cals. I didn't want to get in to it at a luncheon--but geez, we are dealing with more than she can even imagine
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