Building a Care Team for the Marathon of ALS

Help has come and gone over the past decade since my husband, Todd, has had ALS.

When it became too difficult to travel four hours away to an ALS clinic, Todd went to a local neurologist who managed his care. After a couple years, his neurologist left the area, and the hospital didn’t replace him.

Since there are no other neurologists in our area, Todd started seeing a geriatrician. Todd was only 46 at the time, but we figured he might face similar issues as in the aging process. We liked the doctor a lot, but then she left the area a year later.

We then found a seasoned general practitioner, who admittedly didn’t know much about ALS, but had years of experience, common sense, and was willing to consider ideas we gathered from the ALS community.

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Todd has seen the general practitioner for the last few years. This practitioner has continued ordering physical therapy for Todd, which has helped to manage his pain and sleep. We fought a few colds under the care of that doctor, having several issues addressed by talking to his nurse on the phone. I was really disappointed when he told us that he was retiring at the end of this year.

“Whom would you recommend?” I asked him.

He offered a name, but then paused to reconsider. “He’s good, but he’s got a strong personality. You like to manage things yourselves, and I don’t know if he’d be receptive to that.” He put forth another name of someone he said is really nice. I scheduled Todd’s next annual physical with her. I hope it’s a good fit.

Transitions are always tricky.

We bonded with the physical therapist who taught us the manual assist cough. After a couple years, she moved on to a different company. I occasionally run into her in town, and she always asks how Todd is doing. She gets teary-eyed when I tell her I’m still saving his life with the cough technique she taught.

We’ve had turnover with shower aides and many nighttime caregivers over the last five years. We get attached to people, or at least accustomed to their quirks, and then they move on and it’s back to square one.

In the beginning, I’d cry when I found out someone we depended on was leaving. Now, I’ve come to expect it.

I’ve come to expect the same even with friends and family. I’m grateful for the few who have stuck with us, but most people don’t stay in the day-to-day mess with us. They have their own lives, problems, and health issues to manage. I get it. My emotional and physical bandwidth is taken up with our situation, so I don’t have the capacity to help others manage their crises. And life with ALS feels like a chronic crisis — there’s no resolution.

Todd is dependent on me, but I can’t do it all, 24/7, so I’m dependent on others. I’d rather be independent and in the position where I’m the one jumping into other people’s lives to help. I don’t like being the needy one.

Trying to build and maintain a support team is one of the hardest things about living with ALS when it becomes a marathon.

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