Recent content by Mary Helen Barr

  1. M

    Neck Collars

    Unfortunately, I never did find anything sufficient for my father. We resorted to tying his head back with a cloth strap. It would be good for a while, and then I'd have to release it to give his poor head a rest. We tried everything. His head was so heavy, no neck collar or brace would have...
  2. M

    Question on Beds and Sleeping

    For almost two years, my father could only use his recliner. We had the best equipment from his medicare and the VA, but he did best in his recliner. I had quite a time rigging things up so that his feet wouldn't drop. All parts of him were propped in various positions. I figured that if he...
  3. M

    Caregiver frustration, anger, guilt...

    I kind of had some of the same experiences with my father, except he was always nice and appreciative to me (not to everyone, but to me). I eventually had to start taking lexapro (antidepressant) and it did help some. My dad's choking scared everyone except me. It was certainly unpleasant...
  4. M

    Way to go Mike aka Quadbliss!

    Does the song "Doin Some Rearrangin" have words? I'd be interested in reading/hearing it. Mary Helen
  5. M

    Question regarding BM's

    I am sorry to say that with my father, there were many times I'd find him sitting in diarrhea. He could not help it, and I just dealt with it. I'm sure it was terrible for him. Whoever thinks they're going to end in that condition? I never knew what it was that caused this, just the...
  6. M

    bathroom problems

    My father was always either constipated or having diarrhea. I think it has something to do with never being able to move. (the paralysis). I was the only one to put him on the toilet every day, and to do the hygiene afterward. We worked out a routine. The last year or so, he would sometimes...
  7. M

    Dad is really sick right now

    Sandy, I don't know if this will help or not, but I couldn't bring myself to say those words, either. (about it being OK to just let go, etc.) What I said to my father was "I just want you to know that if I had it to do all over again, I would still take care of you. You have fought for a long...
  8. M

    Wavering emotionally

    Sandy, what you describe really takes me back to my father's last days. The hospice nurse said she has never seen anyone so pitiful as he was. Not able to hold his head up, difficulty breathing, difficulty swallowing, completely paralyzed, unable to speak, and had a huge bedsore that I could...
  9. M

    father has no joy

    That was my father's life for his last two years. He even slept in his recliner chair. He could only get out of it when I came over each day to take him to the bathroom, or for doctor visits, etc. The chair and the TV were the only things for him. He couldn't read the paper or do anything...
  10. M

    Someone...PLEASE save my sanity! Please.

    I lost my father to ALS in December, and he had it for 7+ years. I get random twitching, but I really don't feel like I have a problem. I don't feel like it's a problem, because I might have some all day, and then not again for weeks. Having a parent with such a hideous disease does tend to...
  11. M

    Hospice suggested

    We avoided hospice for a long time, because we thought my dad wouldn't qualify because of participating in a study. We were wrong. The doctor had to give a diagnosis of 3 - 6 months, but our hospice said that the doctor has to say that, and not to worry about the number. (my dad seemed upset...
  12. M

    Advice about ALS clinics

    My father went to the clinic, because his neurologist in Pittsburgh, PA runs the clinic. We always went every 3 or 4 months, but all my dad really cared about was seeing his neurologist again. We weren't really "into" the visits from all of the other people (nutritionist, social worker, etc)...
  13. M

    Just Starting

    Rich, My father was diagnosed at 72 and died at 79. He lived alone until he died. I went over there every single day and took care of him. I would get him settled in his chair, fed, toileted, cleaned, etc, and then leave and he would be alone for several hours until someone came and gave him...
  14. M

    A failed caretaker...

    I spoke it, too! I shouted it! (not to my dad, but to God.) My father's ALS started out in his left hand. He seemed to have a very slow progression. I think 7 years is considered to be a long time for ALS. I have heard/read that bulbar symptoms move a lot faster. He didn't seem to have any...
  15. M

    A failed caretaker...

    I can totally relate to the expression of anger to God. I am ashamed of the things I would shout out in the car while alone, or think to myself when not alone. I totally took care of my father for a couple of years. He had ALS for over 7 years. The really strange thing, is that I work in a...
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