A Day in Our Life

The “Things They Carried” is a set of linked short stories https://en.wikipedia.org/wiki/The_Things_They_Carried written by an ex combat soldier about soldiers during the Vietnam War and the title implies that people’s experiences are so almost, sort of, close enough to being alike that talking about one person somehow informs us about the general case.
All of us who are caregivers to ill spouses, particularly those with some sort of dementia, carry a similar load and today was so classic a retelling for me of incidents that every one else has mentioned in very similar ways. I was reminded today of that uncommon similarity to soldiers because my day was a collection of things typical .
Yesterday, our daughter, husband and son came for lunch. They bring everything but just the experience and shepherding Jackie through it is exhausting. I had told her on Saturday that our daughter was coming so her daily routine was thrown aside.

Instead of getting up about 10 or 10:30, taking two hours for breakfast during which she chews all her morning pills, drinks milk from a measuring cup and then inspects each separate piece of General Mills Cinnamon Rice Chex for suitability before she eats them. Those she rejects sit on a square quarter of paper towel which she prepares every day or so and piles and piles in stacks around the house. If I time it right I can grab the rejects and throw them away before she notices, otherwise she folds the square around them neatly and tightly and then either leaves them on the kitchen counter or forgets them until later. Then she goes back to sleep until 4:30 or 5.
So, instead of this normal routine which seems to be calming for her and allows me to time my day, she was up at 7:30 and spent the day roaming around, arranging things the way she likes in anticipation. They arrived at 4:30 and our daughter laid out supper she’d brought. Jackie took one look at it and rejected the main dish, eating only salad, blue corn chips and a bit of chocolate cake. When they left about 7 and I wanted to watch a movie, she stood in front me and talked at me until I asked if she wanted to go upstairs to bed, which we did about 7:30.
Her nightly ritual of changing into pajamas, smoothing the sheets, putting 4 pads on the bed (which she doesn’t need), and arranging her 4 pillows in proper array and then getting into bed and settled without disturbing the pads at all, took until 9. She has this cycle where she smooths the top pad, then places a pillow, disturbing the pad which must be smoothed again. This cycle is repeated until all the pads are smooth, the pillows are in place and the blanket folded correctly.
I sat in a chair and read until it seemed like she was actually going to stay in bed and then scouted around looking for pull-ups hidden where they can be smelled but not seen. I put somethings in the wash to soak and, finally, went to bed. I found a movie for her to watch (not violent or loud – she likes Charlie’s Angels) and then fell asleep.
I woke up this morning to see a rainy day and thought that Jackie would be exhausted from yesterday so I could have a full day of chores. Our wonderful care giver, who usually cooks and does the laundry and keeps everything together while I lie on the couch and eat bonbons, has been out sick for a week. (I now know that she is in the hospital with Lime’s Disease so I have more days of being overwhelmed with doing everything but at least she is on the road back to health.)
So I went food shopping very early, treated myself to 20 minutes of reading over coffee and then went home, put stuff away, worked on my blog, worked on my pictures, sorted laundry, threw a load in and got ready to cook. I still don’t have the knack of keeping up with what we have for groceries so I am forced tonight to make avocado, bacon and roasted red pepper sandwiches because the avocado is now ripe and will start to rot tonight at 7.
But Jackie didn’t stay in bed asleep.

Jackie scrubbing the table with a sleeve of crackers.

At ten she was up and following me around. At first she insisted that I sit and watch HGTV where they fix houses or refurbish crap bought at a flea market and where every single contestant seems to think that being the biggest ass-wipe in the Western hemisphere is good television.
I sat through one thirty minute show, trying unsuccessfully to fall asleep on the couch and, faced with going crazy or leaving the room, I went in the kitchen to cook for the week ahead – pork tenderloin coated with seasoned bread crumbs and a lasagna – two no-fail, easy as pie things. Lots of bowls, mixing and measuring things but a minimum of actual skill or experience required. Of course, Jackie followed me in and stood exactly in the apex of the L where I needed to stand.
While I dodged and weaved around her, mixing, shaping, slathering, etc. she picked crumbs off the counter, moved things out of my reach and once, when I wasn’t looking, ate an entire uncooked lasagna noodle. To distract her I showed her a pineapple that was ripe, she seemed interested so I cut it up and gave her some pieces which she promptly ignored to go back and stand in front of the sink.
I had preheated the oven so when the oven dinged, I put the lasagna and the pork in the oven and began to clean up, tossing the myriad of mixing implements in the washer and the bowls in the sink. Evidently, when my back was turned, Jackie shut off the oven because, in 25 minutes when the timer for the lasagna went off, nothing really had cooked at all.
I restarted the oven and said that if she didn’t move out of my way, I was going to punch her right in the nose, she smiled patted me on the butt and went to tear paper towels in quarters – her newest hobby.
Today was a day for me that every person who cares for someone with dementia can recognize, if not in the excruciating details, but in the similarity as to how our lives are squeezed to fit into whatever pattern that dementia requires.
I love my wife and would never punch her but she really shouldn’t get in my way when there are sharp knives available.

Jackie and Ti, her friend, and mine, every afternoon

2 thoughts on “A Day in Our Life”

  1. Lew, I think your metaphor of squeezing our day into the shape that happens to fit the Day is a insightful discription of how daily changes need to be accommodated immediately.

  2. Lew, a friend said that with dementia one has to adapt or perish! I’m not so sure…
    When I had to live on tenterhooks, one crisis to the next, it nearly killed me physically.
    Now that I take more time for me, V seems to have started fitting around my rhythms. I can now accept invitations occasionally, as long as V has company.
    I’ve found it very difficult to not be affected by V’s mood: in fact, there’s almost co-dependency. Similarly, if she doesn’t eat, often I don’t either (no appetite). I wonder if that’s a manifestation of “survivor guilt”.

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