respite

  1. D

    trach questions

    I would like to hear from any pALS or cALS who are living with a trach. I understand the medical and technical side of it, but I am interested in hearing the nitty-gritty ramifications of living with all of that at home. The real stuff. How do you staff, are there lay person family members...
  2. S

    New caregiver

    So sad. Husband diagnosed end of December. He's very used to being in charge and making all the decisions. I am a RN/NP. So I know a bit about caregiving. He fights me on all the ways to do things. Slowly he is beginning to listen to me but it's frustrating. I only seem to cry when...
  3. T

    Getting Help, Caregivers

    We have a mix of ways that we have help. I thought I'd share them. I'd also be interested in hearing your ideas. For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're...
  4. T

    Hi all. TIANDB

    Hi i was pointed here by Nikkij . The Introduction link should be top of the page IMHO. I left the Fire service here in the UK aged 50 in 2012 I had enough in my pension pot to get by on and I had a sweating problem, I thought this might be due to job stresses and would clear up when I...
  5. N

    Robinul/Glycopyrrolate Thoughts

    Hi all, I am not a Dr. and I don’t play one on TV. I’m just a CALS who pays very close attention to what meds my PALS is on and how they affect him. I want to relate something I’ve learned so that you may be aware of a possible side effect of this medication. Brian has been on Robinul for...
  6. L

    VA coverage for 24 hour care?

    Hi, everyone. This is such a wonderful community you all have built. I have learned so much already and am so grateful for this resource. My friend has very recently been diagnosed with ALS, bulbar onset. Diagnosis was only about 3 weeks ago, but things have been progressing rapidly as his...
  7. T

    Ground Hog's Day

    Every day seems more like "Ground Hogs Day". My son and I have been caring for our PALS since September 2011. The first few years were not bad. He still could talk, walk, and eat. As the disease progressed, he decided on a feeding peg tube and much later, a ventilator. He is paralyzed...
  8. S

    Need for Respite

    I have been experiencing weird interactions with my family, both for those that live here with the PALS and me (CALS), and outside family members. We are Christians, and it seems that no one understands that I need a break. It seems so odd. Thank God I only work once a week and I have a lot of...
  9. pdcraig

    I didn't know what I didn't know

    I've been catching up today and in the roll call was introduced to Slippery Sally All I can say is "God d****t". How is it I have never heard of this? Thank you Tillie BTW. Even 4 1/2 years into this, there is still the seemingly never ending, "I didn't know that." It got me thinking of all...
  10. D

    Mom with ALS

    My mom was diagnosed with ALS in November of 2015. In October of this year we did the ALS walk here in Sacramento. Mom was able to go with the help of a scooter. But since then she has gone downhill. We have had her in respite care twice. This last time we wanted to be able to leave her...
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