Small wins matter when living with ALS
As a caregiver, I often feel powerless to change things
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In more than 16 years of living with my husband Todd’s ALS, I’ve fought a lot of battles, and I’ve won a few.
When Todd was prescribed at-home physical therapy, he was also eligible for home health aides to assist with showering. I pressed the agency to give him two showers a week instead of their standard one, pointing out that the Medicare handbook allowed for even more hours. The agency was resistant at first, but eventually agreed and provided two showers a week for a few years.
When Todd could no longer drive his wheelchair safely, his doctor prescribed head-array technology. We were told by the mobility company that it was denied in their Medicare preapproval process. I ended up writing to the corporate headquarters explaining how unsafe Todd’s current setup was. They finally agreed to order the equipment, and Medicare paid for it.
But still, I often feel powerless to change things.
Todd is still getting physical therapy, but in recent years, the home health agency has struggled to find home health aides. When they don’t have enough staff to send shower aides, that task falls on me. And we’re waiting for his new wheelchair to be serviced, to raise an armrest and adjust the programming, but that company is also short-staffed, and we don’t know when or if we’ll get the issues resolved.
I, like many caregiving spouses, was shocked to find out there isn’t caregiving help for someone who is paralyzed and needs 24/7 care. The Medicare handbook theoretically allows up to 28, or even 35, hours of home health services in some circumstances, but agencies are reluctant to provide that level of care due to staffing issues and Medicare reimbursement policies. So, despite what the handbook says, families are often left doing everything themselves or paying for private caregivers.
When I look at what our country spends money on, I’m angered by what’s prioritized over basic healthcare needs, but I feel like my anger is futile. What can I do to get the caregiving gap addressed?
Last week, when I got to fight a little battle that felt winnable, I was energized.
‘I want to fight’
We filed an amended tax return with our state last spring and sent in payment, which the state refunded three days later. Now, we had gotten a notice that they were billing us for that amount plus $70 in penalties and late fees. I was fine sending in the check for the amount of tax due again, but not the late fees.
Todd wondered if we should just pay the fine and be done with it. “Is it worth the trouble?” he asked.
“Oh, it’s worth it,” I said. “I want to fight.”
As I fed Todd his breakfast, I tried calling the number listed on the paperwork that had come in the mail. I got stuck in automated menu purgatory, pressing buttons for different options and never reaching a live person. I got hung up on multiple times.
Not to be deterred, I searched the internet and found that pushing 5 would let me bypass the automated system. I felt triumphant — until I found out the wait time was over two hours. But I left the phone on hold while I helped Todd toilet and gave him a shower. I had him dried off and set up at his computer when I finally got through to a live customer service representative.
Todd and I explained the mix-up, and a helpful customer service representative gave us directions on where to send our tax due check, along with an explanatory letter.
It is such a small win in the grand scheme of things, but that $70 pays for almost half a night of caregiving — and more than that, it just feels good to win something.
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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