July is here and so is NancyCamp. In fact, two NancyCamps — one for the children and another for adults. But at the same time that I am doing things I love to do, Bo is just existing. Every day the same … sleeping, eating, sitting, an occasional car ride.
“Take car of yourself,” so many people say to me. I know why they say it, but it’s a really hard thing for a caregiver to do. I’m lucky because I can do things for me, but I think of all of the caregivers who don’t have help, who can’t get out of the house. Who are trapped in an endless nightmare of care and loneliness.
I was sitting in my car earlier this week, Bo in the passenger seat, waiting for the ShopRite “Shop at Home” girl to bring the grocery bags to the trunk of my car (a very helpful service.) As I sat there, I was facing a Hallmark store and thought to myself, “I’ll go in and pick out some cards that I need,” then the next thought was, “I can’t do that. Bo’s in the car. ” He can’t stay in the car — who knows what would happen? — and he doesn’t have the strength to go into the store. Besides, if he could go in, he would keep asking what we were doing.
Jon and his family are away this week. When he said they would be taking a trip, my heart flopped. Our usual substitute caregivers weren’t available; I would have to find someone else. Who would it be? Could I do 24-hour care for eight days? Finding someone who’s kind, capable, dependable, helpful, who knows how to care for Bo, isn’t easy. There are many services that charge too much and offer too little. I saw it with my mother when she needed 24-hour care at the end of her life. “Caregivers” who plugged in their phones, turned on the TV, and ate her food.
I had saved the name of my mother’s hospice aide whom she loved. Again, I’m lucky. She said yes, she could help us, so she is here most days for 6-8 hours and one evening and I can get out. She is everything we needed — she’s wonderful with Bo. Luckily, she has a good sense of humor because today he patted her behind and said, “Holy s—, you’re really big!” I guess you could say he has lost his filter.
Before the family left, NancyCamp began with the two children. On Friday we did our backstage tour (a success!) and on Saturday, despite cold rain and wind, we took a boat ride through the tall ships on the Delaware. We hoped to see the world’s largest rubber duck too but he was injured and hanging pitifully over a pier on the Camden side. No matter, we had hot dogs and chicken sandwiches and took the kids’ pictures sitting in the Philly sightseeing chair before Jon picked us up. (He brought Bo along for a ride in the city while we went on our adventure. Bo seems to enjoy these outings.)
Yesterday was the second Adult NancyCamp. (Tuesdays in July.) After missing the Philadelphia Orchestra concert last week because of the storm, this was a good intro to our summer activities together. We had lunch at a local restaurant, then strolled through Haddonfield looking at the paintings and sculptures along Kings Highway and ended by buying bestsellers in a new bookstore. Oh, and a stop at Starbucks, of course.
Next Tuesday: The Impressionist Exhibition at the Phila. Museum of Art.* If anyone would like to join us, I have an extra ticket.
When the children return, we’ll get back to their schedule too. I have a lot of plans.