Dad, Lew, and I were sitting at the card table yesterday putting together our third jigsaw puzzle. It is a great activity for Dad. He gets socialization, he uses his fingers to fit pieces together, he has to employ spatial recognition to figure out where pieces go and, it makes a pretty picture. [A photo of which I would share on our Facebook page but Lew took it all apart before I could get a picture.]
Meanwhile, I’m trying to organize all the pieces by color or content, blue sky pieces in this pan, green grass pieces in the box, pieces with people in the pie tin. When I look up, Dad is taking all the pieces out and laying them one-by-one on the card table. I calmly ask, (okay, I had steam rising from my eyebrows!) ” Why? Why are you taking all the pieces out?” So he can see them all at once, he replies. A reasonable enough response, I guess. But not my way. I decide right there and then I have a decision to make. Either: Choice 1-have a fit and make him put the pieces back since I have my own exceedingly organized and (as my husband would say) slightly compulsive way to go about a puzzle, or; Choice 2- say nothing and work around it. I actually sat there having an internal debate. I did, after all, order the puzzles so Dad would have something to do and so we could all work on them together. I am, after all, the daughter-caregiver, looking out for Dad’s interests, so I need to be the bigger wo-man. But it was not an easy concession to make. Finally, I let him lay out the pieces for the portion of the puzzle he was working on while I kept mine organized the way I wanted. We happily continued in that vein until Dad went to lay down at which time, I immediately proceeded to put all the pieces back my way! What is the lesson here? We are all tired, grumpy and running low on patience in the face of COVID 19 and the lock down. And when you are tired, grumpy and running low on patience, it is very difficult to be a gracious caregiver.
When the stay-at-home orders were initiated, I imagined working diligently to find things to do, for all of us. I was proactive in researching online activities for Dad: exercises, boxing, hand exercises, singing. I imagined all of us starting a new eating plan since we would be eating together at home. I hoped I could find an exercise program for me too. We were all going to emerge from this looking fit and healthy. Lew and I ordered, in addition to puzzles, books, paints for birdhouses, cookbooks, etc. We’ve kept Amazon busy. But, going into the third month of social distancing, we are tired of it all. Just throw some hot dogs into a pan, put some chips on the table and call it lunch. I mean really-isn’t lunch the most tedious meal of the day? Breakfast is fairly rote, for us it is either oatmeal or eggs and bacon. And Lew and I have been pretty creative about cooking new recipes and trying out new things for dinner. But lunch-just get it over and move on. But I digress. Fortunately, both Rock Steady Boxing and the Beaches PD Support group from Palms Presbyterian Church have begun Zoom classes/meetings. This has been a blessing for Dad (not that it made me motivated to begin online exercises for me!!). But suddenly I needed a calendar again. Zoom classes every day and some days twice. And Lew is still teaching his high school physics classes on Zoom. We are the Zoom family! Yet there are still huge swaths of time when we find it hard to fill our time. And, there are times when, although there might be something which could be done, (like laundry, or cleaning, or organizing a closet) none of us are, in any way, interested in moving.
Ennui, this is the word which best describes life in seclusion after all this time. According to the Oxford Dictionary it is: “A feeling of listlessness and dissatisfaction arising from a lack of occupation or excitement.” Bingo! Exactly how I feel. When I see ads on my phone or TV with all these already fit-looking people doing exercises in their perfectly appointed living rooms-maybe with a dog-I want to strangle them (however, that seems like it might take too much energy). Or stories on the news where people coordinate across cities and countries to sing a song or perform a play-while I decide if it has been one week or two since I washed the sheets and whether they really need washed regardless. We play a game in the morning over breakfast, is it Saturday? Sunday? Does it even matter? And the concerns now about when to go out weigh heavily on our minds. How much exposure is too much? Are we safe outside? How long can this last? Will the toilet paper supply hold us?
As caregivers, it is, at times, overwhelming to look out for your loved one when taking care of yourself is itself, a monumental chore. Not a chore because it is hard. But a chore because of lack of motivation, energy, and even, feelings of dread. I was reading in today’s paper about health care workers who are burnt out. They simply don’t have any more to give. Many are suffering from PTSD. And it made me think that all of us in the Parkinson’s Disease community, PD warriors and those of us who are caregivers alike, need to be vigilant in looking out for each other right now. Because I know for a fact, I am not the only one feeling ennui. Think about calling someone each week. Or sending a couple of postcards. And give yourself a break. These are unprecedented times. If you need a day to be lazy, take it. And remember, none of us are going through this alone.