We celebrated our 22nd anniversary last Friday. Larry wasn’t feeling great. We had talked about going to a favorite restaurant for a late lunch/early dinner and then to a waterfront bar for a drink, but were contemplating staying home.
I encouraged us to go, even though I barely had the energy. I figured this might be the last one we got to celebrate.
So I showered and dressed, helped him shower, shave, and dress, and off we went in the wheelchair van, several hours later than planned.
I’m so glad we went. We found easy parking for the van. We chose from the menu carefully so I wouldn’t have to dislodge food that got stuck in his mouth. We sat at a table with lots of people-watching so the normal lack of conversation between us due to his speech challenges wasn’t troublesome.
He made a toast with a wry smile. I had to ask him to repeat it 3 times before I got up and leaned toward his mouth to hear. “I hope the next 22 years are as good as the first 22.” Hmmm. If only…
When we’d finished eating the restaurant was far more crowded and navigating the path through the tables and chair was challenging in the wheelchair. Most people got up and moved their chairs out of the way, but one young woman didn’t bother and Larry clipped her chair as he went by and his wheels carried her chair and her along with him. She wasn’t happy. I thought it was kind of funny!
After dinner, we drove over to the waterfront bar in a big hotel. They took good care of us and we sat side by side, he in his wheelchair and I in my rattan chair. He had a rum and ginger, I had a Prosecco. We watched the sunset and held hands. It was as romantic as all the other anniversaries. We came home smiling.
But then he had a breathing slog – when the phlegm gets thick and lodged in his throat and his breathing is shallow and gurgles with each intake.
I got him a hot moist cloth to breathe through, massaged his chest and neck, and then gave him one of those pillows with the seeds in them you put in the microwave for his chest. It’s frightening for us both, what I do isn’t really useful except in making me feel like I’m trying, and it underscores the helplessness I feel in the face of this disease.
He goes to bed with his heating pad and his CPAP breathing machine, saying “I love you” just before I situated the facemask. “Did you say that in case you die during the night?” I asked. He nodded. Romantic, right? NO – then I wasn’t awake all night listening to be sure he kept breathing. We laughed about it in the morning when I told him I’d consider myself loved if he’d stop telling me just before sleep.
Days later, though, we talked about the insidious emotions – the jealousy we feel toward other people who can do what they want, enjoy life without these challenges. We both feel so angry at times. It’s hard not to.
So I have to keep trying to get us to experience those more humorous, enjoyable, and even romantic moments, even when I don’t feel like it. Even a drive around the neighborhood in our ancient golf cart so we at least get out of the house helps to chase away the dark times.