People seem impressed when we get out and do things. But it’s a way to maintain a certain normalcy in our relationship, and in my life.
We’ve gone to a Patriots game – I borrowed a wheelchair because he was only using the walker at the time. We’ve gone to museums like the Dali Museum in St. Pete where they have wheelchairs to borrow at the entrance, and the Thomas Edison and Henry Ford houses in Ft. Myers, where we just took lots of breaks and didn’t see everything.
We do smaller things like taking the old golf cart down to our park to watch the sunset with a cocktail. Or bringing sandwiches with us to the beach and just sitting in the car eating while we watch the sights. Some days I help him into the pool and he leans up against the far wall. I stand close and we play catch with a floating ball, laughing at all the misses and all the splashing.
For the 4th of July we went to Selby Gardens, right on the water in Sarasota, for their Extravaganza Cookout. He had seen it in the paper and wanted to go. We made reservations (expensive, as it was a fundraiser) and invited another couple.
It’s pretty exhausting just to get ready to go. Feed and walk the dog. Get Larry into the shower. Help him wash his hair and shave. Dry and dress him. Brush his hair (he’s very careful about his hair. He’s got a great head of hair.) Deodorant. After shave cologne. Eczema cream on his nose and ears. Shoes. Into the wheelchair. Get his glasses. Get his sunglasses. Get him something to drink. Be sure we have an extra catheter, kleenex.
Then I shower, wash and dry my hair, dress, do make up and find jewelry, shoes. Is it worth it, I wonder, at this point? I’m exhausted!
We picked up the other couple and headed into town, watching the clouds roll in. Just as we arrived at the Valet parking stand the sky opened and the deluge began! Luckily our friends are chill and we all sat in the van for about 15 minutes. Even the valets disappeared because of the lighting. Finally it let up and we managed to get the van situated so the ramp would extend beyond the river that was now the road. Into the building we went, all soaked in spite of umbrellas, but laughing the whole way. What the heck? It’s warm in Florida in summer.
Eating out is complicated now. We kept rotating the table to find a way for him to roll up and fit his knees under it. Then I filled two plates at the buffet, considering which foods would be safest and easiest for him to eat. Our friends have seen him eat and know I often have to put my finger in his mouth to move the food around for him, and that he sometimes drools. It’s not always pretty, even though he’s still a handsome guy. I wondered what the couple who sat down at our table thought. I noticed them glancing over then looking away. I didn’t much care one way or the other. They were friendly and so were we.
The rain finally stopped and we were able to meander around the gardens. He missed the path at one point and rolled into the dirt, but our friend pushed and they easily got back on track. For some reason, Larry was completely tickled by the moment and seeing him laugh made the rest of us laugh! We arrived back at the waterfront in time for the fireworks. Of course Larry had his wheelchair so he was comfortable and we just stood around him watching the display and listening to the patriotic music from the speakers behind us.
These are the moments, the big ones and the little ones, that make all the effort worthwhile. We are a couple. I am a person, not a caregiver. A wife, not a nurse. For these moments the symptoms, the trouble, the terminal diagnosis, all recede into the background. We are people with friends not people with a disease.
It may be exhausting to go out and do things, and I may not always feel like I have the energy to make it happen. But it is always worth it!!!