Discussion in 'Chit Chat' started by jole, Feb 29, 2008.

  1. jole

    jole Member

    Hi there! This is in answer to your Porch post. The lady I took care of did not shake. She just gradually lost her ability to use her muscles. At first it was weakness, like she couldn't pick anything up and would have to use her arms to scoot things to the edge of the table. Then she had trouble with walking more than a short distance. Next she couldn't use her arms or legs at all and had to be lifted from the bed to chair. It was about this time that she couldn't chew her food anymore and they put in a G-tube. Then she couldn't speak at all so we would try to read her lips and got pretty good at that. Not long after that she lost control of bowel and bladder. Then her breathing and they put her on a respirator. She then stabilized at this point for quite awhile - several years. At that point she could no longer move her lips and could only blink her eyes for yes and no. Then finally one day her heart just quit.

    The one thing to remember is that they always know what is going on and being said, even if they cannot communicate with you. So when it gets to that point, be sure to still talk to him, pray with him, have music playing in his room or the tv on for him to watch. They also need to be repositioned very frequently to keep their skin from breaking down.

    It is very hard for the family. I think even harder than Alzheimers, because they are happy in their own little world once they get to a certain point. With ALS they are usually alert pretty much to the end. You will have many choices to make, as far as how far you want to go for him. It may be a good time now to ask him if he wants extra measures taken, for instance a respirator, or IV's if he gets an infection. He should be able to make these decisions now while he is able. He may not want any more done than the G-tube.

    I'm sorry if this has more info than you want. I know it is different for each person, but this is what I know. I hope this is helpful and doesn't upset you. If I can help in any way, or be a support person whenever you need one, please let me know! And I hope that your family pulls together for his sake. Is he going to stay home or go to a Nursing Home? It is a lot to do at home.

    Again, let me know if I can be of help in any way....

    Friends - Jole
  2. kjade

    kjade New Member

    I am answering you too (hope you don't mind Jole) from the Porch thread. Evertyhing Jole has written is very true. It is extremely difficult for them because they do know everything that is going on.

    My MIL did not shake (that I remember) - she was actually dx'ed with MS first - she kept tripping and falling down all the time. Then it got to the point she couldn't walk, and had to be in the wheelchair. She was bedridden after only 3 or 4 mos of being dx'ed with ALS.

    She started writing notes to us because it became too hard for her to talk. She left the hospital near the end because she wanted to be at home. My FIL got a hospital bed for her and set up a little room at home. He changed her tubes and took care of her. I remember we had to wipe her mouth a lot because she could not swallow the saliva. It was very hard to watch.

    Toward the end, she wrote us a note telling us what she wanted to be buried in. I remember thinking that she was giving up at that point. She could not take it anymore. She eventually was taken to the hospital because she could no longer breathe, and they were going to put the tube through her throat, and she said no. She passed after that. It was so hard, but we were almost relieved.

    I too hope this is not more than what you were asking for. I don't want to upset you. I'm praying for you that you remain strong, and are able to get through this. I too am here for you if you need to talk.

    PS: She actually did get to see our first born - she came to the hospital in her wheelchair, but she couldn't really hold him. We had to place him in her arms and kind of hold him for her. She died when he was 2 months old. The saddest thing for me was she never got to know him, and never saw our other 2 children. I hope she is looking down from heaven and watching them now and guiding them. They would have loved her so much.
    [This Message was Edited on 02/29/2008]
  3. kjade

    kjade New Member

    I read your last post with tears in my eyes. Especially when you talked about how he asked you to write down who the pallbearers would be.....oh it just breaks my heart. Because I remember all too well how it felt when MIL wanted us to write down the outfit she wanted.

    And when you wrote about how this would be like losing your father all over again.....you must really be struggling with all of this right now....I am so sorry. And I did not know about your sister too. Gosh I hope I can send some strength your way right now.

    Well, as long as I know you want to hear all about our experience with this disease, I will offer anything you want or need. I see you are strong enough to handle this (even though you may not feel like you are right now). So anytime you want to talk, I am here at Chit Chat - not a lot during the week, because I'm at work. But I do glance through posts on evenings that my fav shows aren't on. So if you need me, just drop me a note.

    Take care of you - you WILL get through this.
  4. jole

    jole Member

    Sorry, I've had a couple bad days and missed your reply. Hope things are going well for you. Yes, We will continue to be here for you whenever you need, okay?

    I hope your sis is not suffering. That must be the hardest thing to go through. My younger sis and I are very close and I don't know what I would do in your situation. Keep your chin up....know that there are times things are simply out of our hands, and all we can do is stand by with love and support.

    It's always so important for us to want to "fix" everything, but we have to remember there is a greater power than us in control, and His love is much stronger than ours...everlasting!

    Please take care of yourself so you don't get down too. I went through staying with my mother for 4 months when she died of cancer, and it takes more of a toll on you than you realize. Hugs to you!!

    Friends - Jole
  5. jole

    jole Member

    Hi hon - What's up??? I just saw your post...a few days later, but if you still need to talk I'm here for you. Just add on to this post, okay? I'll watch for you!
  6. kjade

    kjade New Member

    Hi YC1 (should I call you Candy or YC? Which do you prefer?)

    How are you? I was at work all day but I saw your posts, and you seem very down and upset. What is wrong? Is there anything I can do to help or to cheer you up? Please tell me what is troubling you.

    I saw you wrote on another post how you feel like you upset someone - I don't know what happened, but I don't think you need to worry yourself so much. People on this board are really great and very understanding. I think you are just very sensitive. I am too....I tend to create problems in my head that aren't really there. For example...if someone is mad or in a bad mood at work, I IMMEDIATELY ASSUME they are mad at me, and in all reality I did NOTHING, and they are not even thinking about me. I am slowly learning how to stop thinking this way.

    You seem to have a very big heart, and your emotions seem to be getting the best of you. Try not to let little things bother you. You have a lot going on right now, and you certainly don't need to be stressing yourself out so much.....you will only feel worse. Does that make sense?

    I see from your profile that you collect "Precious Moments"....ME TOO!! My collection started when I was 20 - my mom bought me one that had my name on it (which is NOT KJADE)....I just love them - they are soooo cute! I have a whole curio cabinet full of them!

    When dh proposed, it was the cutest thing! My family had a surprise birthday party for me (well that was to throw me off)...I was opening all my gifts in front of all my friends and family....then I opened the Precious Moment box, that was a gift from my mom.

    I took out the figurine, and it was a little boy proposing to a girl - he was holding a piece of paper that said "check yes or no" - I turned it around, and there was an engagement ring tied around the boy's neck. When I saw it, my dh got on his knee and proposed - IN FRONT OF EVERYONE!! I was so embarrassed, and he was so nervous...it was so sweet!

    Anyway.....please let me know what is going on and what I can do to help - in any way I can! Take Care!

  7. Granniluvsu

    Granniluvsu Well-Known Member

    No one on the porch even knows what you are upset about or that any of them hurt your feelings. Mrdad is even confused and so am I. Please at least go back to the porch and read Mrdad's and my posts;

    You also apologized to me for something I have no earthly idea of what you were talking about. None of us are mad or upset at all . I am now cause I can't figure out why you are so upset - can't find any reasonn sweetie.

  8. jole

    jole Member

    I'm not on here every day so don't always post back right away, but saw that you had been on. Sorry I missed you!

    Hope things are going well with you and your family. Gee, Parkinsons isn't any fun either, but in my opinion maybe better than ALS. Neither is great. Maybe he needs to get a second opinion, if he hasn't had one. Could be neither one is the answer? Never know anymore.

    I don't know either what went on at the Porch with you, but I respect your decision for whatever reasons. And will try to keep in touch with you either here or on the main board, Okay?

    Wishing you all the best -
    Friends - Jole

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