Lemme see…We didn’t do what they did, so they probably think we did nothing. Worse yet, they will think we missed out on all the stuff happy families do on weekends, and that we are very disappointed by it.
It is a hard question to answer, because
- we have this sinking feeling that, although is was a satisfying weekend, it will sound to them as if we are bemoaning our fate to have stayed home.
For some care givers, a weekend has normal pleasures, like having family or friends visit. For others, there is no family near. Or friends gather in other places, in large and noisy restaurants (or, even more stressful for care givers, in uptight tidy homes.) Our son cannot hang with that. Just getting from point A to point B or even having people over to our place can create a work and stress load that outweighs the fun that might be had.
So this is what we do. We work around the person in our care. We include them in what they are willing and able to do. We had our son help put away the laundry, and the kid found it focusing and calming. Stuff like that, but not the zealous lawn mowing and power equipment noise that fulfills so many normal families’ weekends.
The rest of the time goes to needed focus on us. Our gut-response is “So what if we stayed home barefoot in bathrobes?” We had a great weekend. The three of us were together and things were relaxed and easy. Everyone was happy. For us, after our son had dinner, his teeth brushed and a bath, we had a delightful dinner of our own. It was an array of “finger foods”, almost like a Tapas Bar…with sips of Tawny Port in-between. Because we didn’t force “normal” activities on the open time, the house had spaces of peace and quiet. We were able to sit and talk about everything from the rapid weather changes to this blog; Tim’s jobs, how our friends are doing, the return of football, and all of the other things that we track as individuals in our usually separate lives.
We could look into each others’ eyes and visit. This is a rare treasure.
- Then there’s the reality that we did a ton, but it is hard to name just what it was.
Care giving is steady activity, not like “We went kayaking” (which we miss) or “We went to a movie.” So sometimes we just look blank when we are asked “What did you do?”
We keep up on our son’s medicines. Even when he wants his own space, we check in on him constantly to make sure it is a good place he’s in. Sometimes he won’t eat or drink unless we are on him to do so. The days are dotted with times to stop and do “normal” things for this person that we love and to whom we give care – things that don’t sound like much to those asking “What did you do over the weekend?” and that don’t leap out as memorable moments to us anyway.
So, fellow care givers, how did your holiday weekend differ from what it would have been? Did it really matter?