Larry’s gone from walking 6 – 10 miles a day three years ago to using a cane, then using a rollator (which is like a walker with big wheels front and back), to now using a wheelchair for part of each day.
Now he has a power wheelchair that he operates with a joystick. He uses it when he’s tired, when I’m tired, and when we go out anywhere. He hates having to use it but loves its comfort. Medicare paid for it, after a lengthy application process that started with his doctor, then a session with an occupational therapist and many many forms.
I was worried that I was pushing too hard for him to get the wheelchair. My son was staying with us for the month of March to help out so he had the best perspective on the situation. When I asked if it was too early, he said “Mom are you #$%%^ crazy?” I took that for a no, not too early.
Prior to the wheelchair, I had to follow him everywhere he went with the rollator. I’d match him step for step with my hands on his hips to provide balance. Even then he fell about once a week at least. Before I started doing that he was falling 3-4 times a week. We’ve been super lucky that he hasn’t had any lasting damage from his falls.
It’s been strange, just like much of caregiving, how the increasing need sneaks up on you. I wasn’t really noticing that I had become his caboose. I was just aware of wanting him not to fall because getting him up was so hard. Prevention was easier, regardless of my (and his) reduced freedom.
The wheelchair was a very hard transition, the hardest mobility transition – for both of us! It was the most dramatic visual and psychological symbol of the progression of the disease. It required the most operational adaptations.
It required a new car which meant selling the cars we had – we certainly didn’t need two as he’d stopped driving about four months before, in large part because he couldn’t walk anywhere once he got there if he was by himself. But also because his son, and his best friend added their voices to mine that he shouldn’t be driving.
We needed a wheelchair van I discovered. The weight of the chair he was getting wouldn’t be supported by any rack on the back. Buying the van required about 5 visits to the dealer because I hated the idea of having one, I hated how expensive they were, I hated having to drive one. I spent many a 3 AM awake churned up about deciding which one of the unwanted ones I’d have to choose. And we had to sell two cars that I loved! Quickly! And even then we’d have to come up with a lot of money. Vans are expensive.
We needed a wheelchair ramp. We have 3 stairs to get into the house from the garage. He was a builder but certainly couldn’t build it. My visiting son drew up the plans according to Larry’s specs and ran the crew of neighbors who built it over a weekend, saving us tons of money in labor costs.
All this for something he kept saying he didn’t want and didn’t need. Finally it came. It was bigger even than we had expected. It took a long time for him to get used to driving it. We have a lot of damage to walls and doorways from turns taken too tight, etc. But it has provided comfort for both of us.
We can go places and do things we hadn’t been able to do easily. He can roll up to a table in a restaurant. Walk down the street holding hands with me. Go to an event or a concert and neither of us are exhausted just getting there. H
He can sit upright now in the chair. His disease has caused postural instability – they call it the Pisa syndrome because he is always leaning like the Leaning Tower of Pisa. In a big armchair, I’d prop him up with a soft pillow. At meals I’d prop him up with a stiff pillow but I spent much of the meal pushing him upright.
The wheelchair has two lateral rib cage supports which keep him upright. Now I don’t have to do the work of righting him, and he doesn’t have the pain of a curved spine.
Although we may not want to be the people that have to need these mobility tools, it’s what they provide us in new freedom we have to focus on.