I usually write my blogs on Saturdays because it’s the only time I don’t immediately have another obligation once I’m freed from routine caregiving. Today is beautiful The sun is shining, the air is warm, and there are no clouds on the horizon. I see a few bees buzzing around, and there are daffodils peeking out of the stems that survived the late-season snows we had this year. As I look around, I yearn to go outside and create hanging baskets of bright-colored flowers and set out other flowers bordering my house, but as I think of indulging myself in those activities, I look at the clock on my computer…it’s already 1:11 p.m. Lynn will be up from his nap soon and need to eat. I have clothes washing that will soon need to go into the dryer. I have an “x” number of reports to write for work, this blog to get out today, and I need to put away several boxes of supplies that arrived this week before my grandson visits in the morning. I also wonder if I’ll have time to get to the library before it closes at 2, and I have a DVD to drop off (that is already on day five of late rentals). Oh well, maybe another day I’ll be able to get outside.
Unfortunately, that’s how must days go for me. I find it almost impossible to participate in the non-essential but normal routines of life. If it were not for the kindness of one of our friends, our yard would likely only get mowed once a summer when it absolutely had to be mowed in order for us to find the driveway. I don’t actually plant flowers anymore because live plants require watering, feeding, and other care. I don’t have time for that so I sit out artificial ones. Artificial plants may be tacky by some people’s standards, but for me, it makes the place look cheery, so I don’t really care if it’s tacky.
Another normal I don’t have time for is cleaning the house. I wipe down space based on where I am when I have a fairly clean, damp cloth. I don’t vacuum or dust and spring cleaning…forget about it! Fortunately, I have found someone who will clean my home for a price I can currently afford, and she comes every other week. However, what she doesn’t touch doesn’t get cleaned. I just don’t have time to deal with what is not essential, so I clean to prevent food poisoning, not to make my home look good.
Shopping is another normal Saturday activity—no can do. To leave the house for any length of time means making sure Lynn is up in his chair (can’t leave him in bed sleeping because if there was a fire, he could not get out), seeing to his food and hydration needs, making sure he’s got what he needs either for entertainment or to work on his writing; put in an indwelling catheter (can’t risk something happening to keep me from getting back or his bladder could be damaged), and then shift my other duties around so I can make time for the store. This is an essential though, at least once a week, but truthfully, I try to do it when I have to be out for other reasons and, other than groceries, I do all my shopping on line—UPS and FedEx has me as a regular stop on their route, I believe.
Case in point: when I wrote the above, it was 1:30 p.m. Lynn called to get up from resting, and it’s now 3:16 p.m., and I’m just getting back to writing. No, I didn’t make it to the library or to return the movie, and I certainly won’t make it to the store. I have, however, moved the laundry to the drier, moved the supplies to another room for storage, gotten Lynn up and settled at his workstation (about a 30-minute adventure), and fed him his breakfast (yes, this late), which also included preparation, feeding and clean up. Oh, yeah, and I’ve cathed him twice so I’ve been busy with necessary caregiving; still no time for what everyone else would view as normal Saturday activities.
The reality is our “normal” is not normal to everyone else. For us, “normal” is focused on essentials, comfort, and preparation for the next necessary event. I’ve let go of the expectation of having a clean house, made beds, folded clothes, stored away supplies, and placed dishes out of the way into the dishwasher prior to the end of the day. That’s our normal and what it takes to survive without being frenzied. It takes some getting used to, though. I still like the other ways better, but I’m learning to let go…some…of the wants and wishes of having that other “normal” be an option.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
