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How do you hire and manage paid caregivers?
Most ALS patients rely on family members and/or friends to provide primary caregiving responsibilities. But there comes a time when outside help is needed.
If you use paid caregivers, what prompted you to hire them? (ie, symptom progression, family caregiver burnout, etc.) And, did you contract with a caregiver agency or hire a private caregiver?y
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11 Replies
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We are liquidating savings – an investment! – to have a caretaker here for 4 hours/day on Mondays-Wednesdays-Fridays. We hired him through the local Comfort Keepers franchise. They scramble to provide back-up if the caretaker can’t be here to care for G. It’s been a lifesaver for me, and G. We also have friends and family who visit, but that is mostly social or to address house projects. I handle the vast majority of caretaking and I do burn out. Weepy days for sure. We are quite rural and have a big property, so having friends help with stacking wood or prepping the gardens provides joy and relief. We are fortunate to have the funds to liquidate to pay for the support, but having him help G shower, assemble the latest gadgetry/supportive technology, and be a new audience for old jokes and stories – precious and worth every $$. Going offsite for a few hours, without being on edge, getting some chores done without guilt, again, precious.
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LandG, yes… hiring outside caregivers is a mighty expense. Many families don’t anticipate having to do this. May I ask, how soon after your husband’s diagnosis did you decide you needed to hire outside helpers?
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I use home helpers. My daughter lives in CA with her husband and kids so she can be of no help to me.
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I wonder how many of our members are using their Long-Term Care insurance to pay for outside contracted home health aides?
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If you are lucky enoough to have Long Term care insurance, use it. I pay out of pocket and it is worth every penny. I use Home Helpers which helps people who need it. Having both MS and ALS I need it.
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Dorothy, do they come in daily? Even on the weekends?
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Hi Dagmar, Apologies for the delayed response.
G was diagnosed in July 2024, but symptoms started in November 2022. The caregiver started in February of this year. We started at 2 days a week, and went to 3 days a week in May. May is when the gardens start needing attention. We may add more time, but that would mean a different caregiver. And yesterday we received a flyer from Comfort Keepers saying they provide 24/7 care if needed. That’ll be a hunka-chunka change for sure. Plus we’d have to provide accommodations. I’m not sure we’ll go that route, but it is good to know. His journey is almost done, and we are getting things in final-final order.
I am really grateful to this community, and especially you, Dagmar, and Kristin and Amanda, your stories are different than ours but provide powerful insight and context.
Good energy, ~L
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Thank you, Landg, for sharing your helpful details and for your strength & caring love for G. Know you are appreciated.
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I do not have long term care insurance. So for me iti s out of pocket that I pay.
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One thing that really helped our family was treating the first couple of weeks as a trial period for everyone, not just the caregiver. Skills are obviously important, but personality, communication, and reliability ended up making the biggest difference in day to day life.
We also kept a simple notebook with daily routines, medications, preferences, emergency contacts, and small details that only family members usually know. It made transitions much smoother whenever there was a substitute caregiver.
Caregiver burnout is real, and asking for help isn’t a sign of failure. Even a few hours of dependable support each week can make a huge difference for both the caregiver and the person living with ALS.
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All very good tips for our other members. Thank you for sharing!
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