ALS News Today Forums Forums Caregivers and Family ​ What are your concerns when hiring someone to provide help?

  • What are your concerns when hiring someone to provide help?

    Posted by Amanda on April 15, 2024 at 9:19 am

    Sometimes taking care of your home, family, and work is challenging. There never seems to be enough time to get everything done. Then, you add having ALS or having a loved one diagnosed with ALS to the picture. In addition to the shock, you now have to add making appointments, attending appointments, getting prescriptions and so much more to your routine. It adds more things that have to be done to your already hectic schedule. Hiring someone to help out can relieve some of the stress.  

    Caregivers and pALS, have you hired anyone to help take care of your home and/or to assist with taking care of you/your pALS?

    How did you conduct your search?

    What interview questions did you ask?

    What organizations were helpful?

    Dagmar replied 1 month ago 4 Members · 3 Replies
  • 3 Replies
  • Charlotte

    April 17, 2024 at 8:51 am

    When looking for caregiving help we went through a widespread, well known agency so they’d have experience with ALS patients and enough people to cover shifts in case of last minute dropouts. They also take care of taxes etc.

    We asked for caregivers familiar with ALS who could help with showers, toileting and other critical services. We were fortunate to get someone who goes far beyond the agency’s usual limitations (at her own discretion) to help with housework, PT stretches, and more. We make a point of expressing our considerable appreciation to her (she makes only a small proportion of what we pay the agency).

    Our main concern now is finding a longterm facility. Most are assisted living (I’ll need more than that), rehab (with goals and end date), memory care (not needed), or skilled nursing (at exorbitant rates tho I have no other health issues, need no vent, and don’t yet need a feeding tube). I use a wheelchair, have very limited use of my hands and arms, am losing my voice, benefit from PT stretches, but still think pretty clearly. We get little guidance through the ALS clinic.


    • Danni

      April 17, 2024 at 7:10 pm

      I am still able to take care of myself at home with bulbar onset ALS. I have been on NIV (noninvasive ventilator) at night and have found that no assisted living facility will accept a patient on NIV. They also will not accept patients on CPAP machines. There are only two skilled facilities in my area (southwest Ohio) that will accept patients on NIV. One facility cost $1395 per day! The other facility cost $44,000-$45,000 per month! I find this outrageous. Who can afford such rates and what is a PALS who lives alone to do as the disease progresses?

  • Dagmar

    April 18, 2024 at 12:11 pm

    I’ve only had the past experience of relying on Home Health Aides on a part-time basis to fill in when my caregiver husband was in the hospital for overnight tests. We used an agency that was recommended by my ALS Clinic… Bayada. They had received extra training for ALS. I was very satisfied with their care and even wrote a column about it.

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