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So you think you can be a caregiver?

I rolled over, checked the time on my phone, and sat up in bed. It was 6:15. As much as I wanted to sleep in, I was anchored in my work schedule, looking for coffee before my first call of the day even though there would be no call. I was on leave. It was time to get the first load of laundry going.

Robert lay beside me quietly snoring. I pulled the quilt up to his neck, gently patted his shoulder, and threw my legs out from under the covers. Each day began with my stomach in free fall as I placed myself in time and space. I was caring for my husband who, though as cheerful as ever, was an increasingly incompetent adult. I trundled to the bathroom and collected the pee-soaked towels from the floor.

My routine

This was my life now. Before we went to bed, I placed a generous layer of towels around the toilet to collect the inevitable spray of Robert’s nighttime interrupts. In the morning, I’d collect them and start a load of towels. When he was up, I’d strip the bed and start the second load.

The day was crisp and clear. I checked my neighbor’s rooftop for frost. Not yet. The temperature registered a “balmy” 34; we were still awaiting our first freeze of the winter. I was grateful for the sunshine. My mood was markedly better when the day dawned bright and sunny. Today I’d tackle the last steps in preparing our ADU for rental. 

Ready, set, go

Robert was dressed and ready to start his day by 10:45. I had been working on and off for two hours to get him into his clothes. Between breakfast prep, laundry, and other stray household tasks, I’d wheedled him into putting on his underwear. He sat on the edge of the bed in our front room ready for his jeans. I tapped his right leg to cue him to lift his leg so I could slide the bunched-up pant leg over his foot. Then I tapped the left and repeated the sequence until both pant legs were around his ankles.

I popped in and out of the room between repeated attempts to get him to stand. Robert was gazing out the window, counting the pickets on our front fence. 30 minutes later I was finally able to pull him upright, cinch up his jeans, and zip his fly. The most difficult item of clothing was secure. The phrase “we all put our pants on one leg at a time” took on an entirely new meaning in those early days of being home.

Change of life

An unfamiliar rhythm captured my days. I was used to riding a packed schedule with back-to-back meetings, phone calls, and split-second decisions. As a caregiver, I slowed to a crawl. Victories were painfully simple and not especially fulfilling. This was it now? I was to be grateful when Robert put on his pants?

I loved my husband very much, and I wish this had been enough for me. But it wasn’t. I was angry and resentful. With my children, I could swaddle a newborn Maddie and change diapers for days on end. The thrill of my 5-month-old Jackson rolling over for the first time was sublime. I laughed out loud at 6-year-old Maddie swinging effortlessly across the monkey bars. I felt a swell of fierce protection when 7-year-old Jackson reported his first fight and hurt feelings. But Robert would not grow out of this. He would not mature. He was not going to get better, and I was losing my partner in a never imagined way. 

Daily routines

Kind, guileless Robert had a simple, daily routine from which he did not waiver. After getting dressed, he left the house to buy his daily candy bar, carrying a handful of printed prayers tucked under his arm. On his daily tour of the neighborhood he’d select titles from Little Free Libraries on our street, slip pages of prayers into each, and give them to neighbors (friends and strangers alike) before heading home for an afternoon nap. He loved his days. 

I did not love mine. My life was collapsing into itself, I had no one with whom I could share my “new normal.” Robert was unaware of his disease. And I could not have a conversation with my usual confidant: Robert. He was not with me anymore. It was as if he had slipped into a parallel universe; I could see him from my starship, but I could not reach him.

My magical shrinking world

I spent the afternoon assembling the new bed for the ADU, an Amazon delivery earlier in the week. I pulled new sheets out of the dryer, made the new bed, and then turned my attention to our own bed, soiled the night before, but ready to be remade for tonight. Robert dozed in the front bedroom.

After his nap, we had an early dinner together. Robert was increasingly food-focused and his demands felt rude and unappreciative. He slapped the table where I was to place his plate of food, “Put it right here!” These evening interactions set my teeth on edge. I tried to shake my irritation. 

While he watched an episode of Seinfeld on his desktop, I checked my email. I’d received a message from the principal of the high school. Robert had been found on campus again. I was infuriated. 

Oops. Lost him again.

Come to think of it, where was he anyway? Hadn’t he left to walk the dog around the block over 45 minutes ago? Shit, shit, shit. I jumped into the car to track him down. I found him around the corner. He’d been standing over a pile of dog poop for at least 30 minutes. The poop was cold. He had a doggy poop bag over his hand, but could not figure out how to squat to pick up the poop. He was talking to himself. Counting trees. I angrily scooped up the poop, and roughly shoved Robert into the car with the dog. My responsibilities were relentless, stupefying, and boring. I hated my life.

If I found a memory care placement for Robert, could I go back to work? I wasn’t sure. I had been so beaten down in juggling his needs and those of work that it wasn’t clear that I could jump back into the fray. 

I was reminded of a conversation I had before I went on leave. A colleague told me that his aunt, his uncle and his grandmother had all placed a loved one in care homes. To a person, they all had this to say, “I should have done it six months sooner.” 

I was grateful to be on leave. I needed time to figure out what to do. Could I be Robert’s full-time caregiver?

2 thoughts on “So you think you can be a caregiver?”

  1. It occurs to me that I should prepare to accept that any bedding he sleeps on will be trash within a year or two. I wish I could trash half of what he owns. We don’t even have a diagnosis yet, and I can barely clean up after him in the kitchen without yelling. I want to comment every time he snacks that if he doesn’t lose 50 pounds this year I won’t be able to help him get his clothes on or get up when he falls again.
    It will be a miracle if I get as far as you did.

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