respite

  1. KatieNBoyd

    Respite care

    Good morning, I would like to know if any of you have used respite care for your PALS with FTD? I know that with our Hospice care that they allow a few days respite at our little hospital. I also know that our hospital and its staff have never cared for an ALS patient let alone one with FTD...
  2. F

    Questions

    I am progressing fast, and my CALS is my husband who is disabled and needs hip replacement surgery. Currently, he can still help me. I have a lady who comes Mon-Fri for 1 hour to help get me cleaned up and dressed. This is what is bothering me - if my husband gets the surgery, how will he be...
  3. C

    Second guessing myself

    So here's the lowdown. Last year my husband bought me airline tickets to see a dear friend of mine who has a home in Ireland and will be there on July 12. He was independently able to transfer at the time he bought the tickets. By April of this year, it was clear that he would need more...
  4. J

    Just Found This Forum....First Post / vent (?)

    I apologize for not using paragraphs, etc. For some reason, I assumed that only caregivers would be reading this...pretty ignorant on my part. I like to write...as is somewhat obvious. I will try to be more succinct in future posts....Paul Maybe I haven't searched enough, but this is the...
  5. Nuts

    Tillie's (Affected) Book

    I finally finished reading our Tillie's book, Overcoming Loss by 1000 Deaths. Wow. I started it several times, but wasn't able to read it until I left home for my week of respite. I had to be away from ALS to read her story, and it was incredible. So honest, so intimate, so much truth. I see...
  6. azwxman

    What constitutes 'neglect'?

    At the risk of being told to grow a pair, i have to ask about abuse and neglect. My wife/cals has made it clear that she hates taking care of me. I try to ask politely when i need something and i always wait patiently while waiting for her to get to my requesr...or i at least ACT patient. I...
  7. T

    Respite Care

    I feel bad because I don't have a lot of experience in offering help or resources to others in need, I am just figuring out this ALS thing myself and ask for more help than I give. Now I am asking again. I am caring for my 96 year old dad who lives alone, but he is failing. I do his medicines...
  8. maryhahnward

    Lifespan Respite Care Act

    Respite care is one way to take care of ourselves as caregivers. It gives us a little relief so we can do things like visit with friends and family, go shopping, or go sit somewhere and do nothing if that is what we choose. It is not specific for caregivers of a PALS, but we can benefit, as well...
  9. A

    Vets and home health assistance

    A couple of months ago we finally got set up for home health assistance. The VA pays for 10 hours a week, and we have it set up 2 hours a day Monday thru Friday. In addition to that, we've been paying for a couple of folks for a total of forty hours. All of this is to make sure someone in...
  10. R

    Bulbar palsy & odd tongue sensation

    Hi all, I've just joined from the UK. Mum was finally diagnosed with bulbar MND this March, having had deteriorating slurred speech since Dec 2013. One 'symptom' she is really struggling with is the sensation of a fine cut or hair being on the top of her tongue. This started suddenly 5 months...
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