The Old Folks at Home

by Dean Kramer
October, 2006

Sometimes I think of my disability due to MS as a running start on aging. True, not all old people become disabled, but many do. Currently I’m watching my parents’ generation adapt to disability. My dad would have needed a power wheelchair had he been able to live following his stroke. My mom has been learning to use a cane, a walker, and sometimes a scooter. And, as I sit typing in my cottage here at Cripple Creek, Twink’s 74-year-old mother, Pat, sits in the farmhouse next door in a manual wheelchair.

Until last August Pat was a TAB (temporarily able-bodied, an acronym I use to remind myself that into every life a little disability is likely to fall). Pat’s balance was pretty iffy and she fell and broke her neck. She’s not paralyzed, but her neck is fused now and she’s been bed-ridden for 2 months while recovering. The fall scared her. That, her age, and a consequently long recovery period have left her reluctant to try walking. In rehab she didn’t make the kind of progress they’d hoped. We brought her to Cripple Creek to see if she would make more progress and could live with us, the alternative being institutional Assisted Living.

Twink busted her behind (not literally) making the second floor of the farmhouse as accessible by wheelchair and walker as possible. There are grab bars in the bathroom, a sliding bench in the tub, handles on the commode, and the floors are unobstructed. Pat can transfer to her bed and bathroom facilities easily, prepare simple meals with a microwave and a small refrigerator, and sit outside on the back deck to smoke cigarettes. There’s a living room, the bathroom, a bedroom, and the deck. It’s all quite efficient and cozy.

But back to my running start. As the older generation ages and by the time most of my friends need canes, walkers, wheelchairs, stairglides, scooters, or sliding transfer benches I will be an old hand at using them. I’ll have useful experience to share. After all, where can you go to learn how to use these things?

I was in PT for 2 months and, at one point, I asked my therapist if there was a Wheelchair Driving School. She laughed, said “no”, and asked why I wanted one. Well, if I want to do anything more than roll along a level linoleum floor it would be great to have some instruction. People go up and down hills in manual wheelchairs. They roll across grassy fields. They manage curb cuts. Some people even go down flights of stairs and up street curbs by popping wheelies. How do they learn that? Who teaches them?

My PT attempted to teach me to pop a wheelie. But, as it turns out, my wheelchair is not set up for that kind of thing. The wheels are too far back; great for stability, but popping a wheelie requires controlled destabilization. What’s more, I have ever-changing MS rather than a static disability. My strength is unreliable overall and I fatigue easily. Even if I could find the fulcrum for lifting my casters I could never trust my balance. The PT had me roll across a grassy surface. It’s hard work. Though I have good upper body strength, when the nerves poop out that muscle is totally useless. So much for high-end maneuvers in my manual chair. I said to my PT, “I guess that’s why people with MS use scooters, huh?” She nodded her head.

People act as if becoming disabled is the worst thing they could imagine happening to them. That doesn’t say much for a person’s imagination, does it? About a year ago, when Pat had taken to falling frequently, I mentioned using a scooter if she needed to. She made a sour face. People respond as if using mobility equipment diminishes them somehow, which implies that they see me as diminished, somehow. It’s a shame people don’t recognize how free and independent mobility aids make them. Last summer my mom was refusing to use a cane claiming if she needed help she could lean on my sister. Using my sister’s arm made her feel less disabled than carrying a cane. I pointed out that using a cane would allow her to move when she wanted to rather than when my sister was available. In addition she wouldn’t have to see my sister roll her eyes in annoyance.

So, anyway, Pat is set up for her current circumstance. When she feels more comfortable in her new home and less tired from her move I’ll offer to help her learn to use some of the equipment she now needs, if she wants. There’s certainly the possibility she will improve and need less of it, but if that doesn’t occur I hope she’ll be willing to give herself to life with disability. Some can and some cannot. My dad couldn’t. I think he truly preferred death to living as a disabled man. My mom is so eager for life that she’ll ultimately do whatever it takes to keep going. As for Pat, time will tell.