We need more help for ALS family caregivers in this country
ALS is hard enough, but having to find caregivers makes it almost unmanageable
It’s been a rough season lately in terms of finding care for my husband, Todd.
One of his long-term nighttime caregivers gave notice last summer about moving on. Not only did she work two nights per week, but she was also flexible enough to pick up additional shifts, even on short notice, when other caregivers were sick or out of town. She was effective at clearing Todd’s lungs and other aspects of care for someone in the advanced stages of ALS, which meant I was truly off duty when she worked.
As she prepared to move out of state, another competent caregiver resigned due to family reasons. We felt a big loss with those two, and we’ve since struggled to find replacements.
It shouldn’t have to be like this
We filled Todd’s caregiving schedule from our existing roster as people had availability, and to attract new employees and retain the existing ones, we increased the pay rate.
One of our former employees, a returning college student, was willing to come back to help Todd. And we found a family friend without any previous caregiving experience who picked up another night, but then moved out of state a couple months later. Fortunately, we found another college student who is willing to help on occasion.
My mom put travel plans on hold so she’d be around to help until we could cobble together a consistent team. I’m so thankful for her help, but I worry about her health when she ends up volunteering for night duty multiple times a week. On nights when she volunteers, I’m the one getting Todd washed up and into bed, and I encourage her to leave at 3 a.m. so she doesn’t get burnt out.
Likewise, we’ve filled the holes in Todd’s caregiving schedule with people willing to work an abbreviated shift, and as a result, Todd has been spending more time sleeping on his back. Without being turned as much side to side, his muscles and joints are stiffening up, and he is developing pressure sores. We ordered yet another mattress topper, hoping to find a solution that will be comfortable enough for Todd to sleep on his back and make us less dependent on caregivers.
As more of Todd’s care has been falling on my shoulders, yet another long-term and capable caregiver had to resign for family reasons.
We raised our pay rate again to be more competitive. With the pay increases, our caregiving costs and fundraising needs have increased by thousands of dollars per year, but we did get some interest with the recent bump. We just hired one experienced caregiver who we think will work out great. Also, two of Todd’s former caregivers texted that they had moved back to the area and are interested in working for us again. I put them on the schedule and felt a huge sense of relief.
Feeling like we were finally fully staffed, I wrote a version of this column and saved it as “light at the end of the tunnel.” I wrote about how caregiving for a loved one with ALS gets progressively harder, but as I looked toward the new year, I felt hopeful that help was on the horizon. People can endure tough situations when an end is in sight.
My optimism was short-lived. After I completed my first draft, our Friday night caregiver called in sick, and the light at the end of the tunnel flickered. My mom offered to cover that night, which was good because I had a cold and really needed to sleep. Then one of the returning caregivers who I’d scheduled for the following night had to cancel due to car trouble. The light faded and my anxiety rose.
I cannot take on more of Todd’s care. I’m only human and can only do so much. I rewrote my column and saved it as “no light at the end of the tunnel.”
In times like this, I’m keenly aware of the scarcity of help for people like us in the United States. After an ALS diagnosis, people on social media often ask, “How do I get caregiving help for myself or my loved one?”
The answers are disheartening: Medicare provides very little help, nor does Medicaid, except for those with virtually no assets or income, although some states are better than others. Even then, finding help can be challenging because the reimbursement rates are so low. It’s a shameful reality for a country with so many resources.
In a recent online discussion, a caregiving spouse from Australia expressed sympathy for Americans, because in her country the government provides daily caregiving from 7 a.m. to 9 p.m.
I was feeling defeated, but then I got more inquiries and scheduled three interviews for next week.
I am hopeful again. Maybe there is light at the end of the tunnel.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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