My brother died early Tuesday morning

Jeffrey Creighton Chapman, loving husband, beloved father and grandfather, had just turned 68.

He was rushed to the emergency room Monday for the umpteenth time this year, and he wasn’t expected to live out the week. He was to be transferred to another hospice on Tuesday (his second in a month, bookending a few weeks of hospice care at home); however he passed away before that could happen.

His wife, Carmelle, was no longer able to care for him. He required round-the-clock palliative care to make him comfortable, as he could no longer feed himself (he had a feeding tube installed a couple of weeks ago), clean himself, or breathe at night without oxygen. He woke in pain every few hours, requiring morphine.

Even a week ago, he could still—just barely—work the TV remote, and he had to take a breath between hoarse soft-spoken words. We watched a football game together before he fell asleep.

Monday, he just lay in bed semi-conscious, looking up at the ceiling, unable to speak in more than a whisper or raise his arms. Most of the time, he couldn’t get words out. He could only “speak” with his eyes.

There was no hope of recovery. He had hours left, days at most.

Jeff had developed a rare disease called Inclusion Body Myositis a few years ago. It’s ironically abbreviated IBM; ironic because I worked at IBM for 35 years. No connection, of course; just a weird coincidence.

The disease damages muscle tissue through a combination of inflammation and cellular degeneration. Cellular material and misfolded proteins clump together in the muscle fibers, clogging and stiffening them.

For the first few years, the disease manifested itself as stiffness in the hands and increasing difficulty walking or lifting his legs. Then came balance issues.

Jeff fought against using a walker longer than he probably should have. He didn’t want to limit himself that way.  But after several nasty falls that resulted in ER visits, he eventually gave in. He really had no choice.

Months later, even that was too much for his body to handle. Using the walker, it took five minutes to walk 20 feet from the bed to the bathroom, and he often soiled himself before he got there. Carmelle helped as much as she could, but there was only so much she could do, or that his pride would let her do.

Then, one day he couldn’t get out of or into bed without help.

I live a five-hour drive away, but I visited as often as I could, especially when Carmelle was out of town on business. On a couple of occasions I had to bathe him and clean him up after he soiled his diapers. Not something brothers typically do for one another. It was incredibly awkward for both of us. But you do what you have to do. Carmelle was barely able to help him get in and out of bed. I’m 71, so it’s not the easiest thing for me to do, either.

Jeff fought having to resort to a powered wheelchair as long as he could, but eventually he had no choice. By then, he was too weak to get in and out of the chair himself. He hated that he needed assistance to do anything.

Then he began choking on food. Not big chunks of steak, but rather pieces of bread, oatmeal, and other soft foods. He couldn’t talk while eating; he couldn’t drink while eating. It was one or the other.  His throat muscles were too weak to swallow. That’s what resulted a few months later in the gastric surgery to install a feeding tube.

Last week, after the football game, he wanted to go from his bed to the wheelchair, so he could go out on the back deck and enjoy the beautiful Autumn day. It took Carmelle, Tammy, his care nurse, and me more than 20 minutes to transfer him from the bed to the walker (so he could rotate his body enough to sit in the wheelchair) and then to the chair. And that was going “downhill” from the bed to the chair. He barely had the strength to hold onto the walker while we rotated him and “aimed” his backside at the chair, before he dropped down into it.

But even that was too much for him. After ten minutes outside, he was so exhausted that he wanted to go back to bed. This time it took more than half an hour for the three of us to lift up his 140+ pounds of  “dead weight”, turn him toward the bed, and then drag him up on to and across it, before lifting his legs and turning him lengthwise. He was completely unable to help.

This is what my strong, funny, proud, athletic brother was reduced to in the space of a few years by this horrible disease.

Now he’s free of it.

Rest in Peace, Jeff. You will be greatly missed.

Jeff and Carmelle in 2024.

Update: I returned this evening from Jeff and Carmelle's house. We held a celebration of his life at the funeral home on Thursday. Very uplifting, rather than depressing. Everyone told stories about why they loved Jeff. His bad jokes, his willingness to do anything and everything for his family, his appreciation of everything Superman, and how everyone around him felt loved and appreciated. (Photo from an earlier gathering, including Jeff.)

NOTE: The incidence of Inclusion Body Myositis in the United States is estimated at roughly 1,500-3,000 cases. Compare this to Parkinson’s Disease with over a million cases. Not surprisingly, not a lot of money (relatively speaking) is being spent on research for a cure for IBM. Pharmaceutical companies need a return on the investment of millions or billions they spend on developing treatments for a disease. But with so few patients, there isn’t much chance of that. For more information about IBM, go to: https://my.clevelandclinic.org/health/diseases/15700-inclusion-body-myositis