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  1. P

    A passing.

    My husband passed away yesterday morning. His condition plateau for months. He was fairly happy and was still able to walk though slowly and carefully. Two weeks ago, he started losing his speech almost completely. A week later, he started waking up with breathing difficulty. He would be all...
  2. P

    On edge

    I am on edge, operating on nerves. My head is all funny, tight band across my eyes. When I get this way, I go very very slow, almost as though combating this - on edge feeling. Another episode of dementia last night, my PALS insisted he had to get into a car, fought me and went out the door and...
  3. P

    Hospice and medicare

    I tried to get cough assist machine and found because my husband is on hospice, medicare would not cover it. I asked hospice if they could get it for my hd. They did extensive research into the matter. It costs over 5,000 and they are not able to do it. I did not know it is that expensive. To...
  4. P

    Hospice volunteer

    Sometimes I wish I am not so timid. It is so hard. I have to force myself to contact the volunteer service and get someone so I could run an errand which will take around 2 hours. Anything that is an hour or less, I make sure my hd is comfortable with all the emergency props before I leave. Most...
  5. P

    Cleaning...

    The former cna was very good at cleaning my husband's teeth. The new one is not as good. The first time she tried, he choked on the water she gave him for rinsing and it spooked her. Now she applies a light dent tip clean and when he is tired, skips that. His teeth looked awful and he would not...
  6. P

    Sleeping round the clock

    My husband sleeps almost round the clock some days. He has been sleeping almost the entire day again. Is that normal of Als?
  7. P

    Caregiver stress

    I wonder - could we believe we are holding up very well and then stress creeps up on us unaware? I usually am able to cry the necessary tears only and then keep going, isolating feelings. Recently, I would find myself needing to cry and once I start, I could not stop. I am essentially alone...
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