One Year In

An unexpected call from an old high school friend jolted me from my daily routine of full-time caregiving. “Hi, it’s Ann,” she said cheerily. “I’m just calling to see how you guys are doing.” The last time we saw each other I told her all about Dennis’ medical ordeal—three strokes and a brain injury—suffered in 2010 and the following months that he was essentially unresponsive.

Surprised to hear from her more than five years since that conversation, I was groping for a response. I finally uttered, “Oh, well, we’ve been going through a rough patch lately.” As soon as I said it, I realized it was the most hackneyed understatement I could have devised had it been an assignment.

I couldn’t talk long, I could hear that Dennis had awakened from his afternoon nap and would need some help soon. So, I gave her the CliffsNotes version of our Shakespearean tragedy as it unfolded after Dennis’s stroke on December 30, 2021.

Those who have been though horrible life-altering circumstances dread the unavoidable need to explain what happened to those who don’t yet know. In my situation, the explanation is overwhelming in its complexities. If I had the time I would have given Ann more detail…

When I was told in the ER that my husband had a serious stroke, my main concern was the effect on his cognition. Dennis had been so physically fit and active, working with a personal trainer every week, that it didn’t occur to me his mobility would be so drastically impaired. The sight in his left eye was also affected, complicating things even more, compounding his confusion about where things were in space.

When I finally allowed myself to understand what we were facing, I got sick to my stomach. The old “Never Give Up” facemask that was sitting on the kitchen counter seemed like a cruel detail in a sad movie, mocking me.

Dennis spent more than a month in the hospital, where he received the best care and therapy and made small improvements. He still couldn’t be left alone, however, because of his confusion and impulsivity. Surveillance cameras were set up to monitor him because he pulled out IVs and even Foley catheters. Eventually his arms were bound so as not to bend at the elbow. A few times, though, he wriggled out the restraints and started pulling tubes in the middle of the night.

When his Medicare-allotted time in the hospital had expired, the doctor said Dennis needed several weeks in a sub acute rehab before I could take him home. Because of the pandemic, staff shortages at such facilities were critical. One recommended place, very close to our home, couldn’t take on another patient because of employee scarcity.

So, we ended up in the only other place within reasonable driving distance that would accept a new patient. It was a disaster from day one. As soon as I walked into the room I noticed there were no safety rails on the bed. Days and then weeks passed as my request for basic equipment was simply ignored.

Dennis required two people to transfer him from his bed or chair to the bed. Rarely were two aides available at the same time. Ridiculously long waits were the norm. A few times his need to evacuate his bowels resulted in messes that he sat in for twenty minutes or more.

One aide in particular would groan when she came in to help move my husband. “Oh, this is going to kill my back!” she’d remark. Her attitude was so apparent that Dennis, even is his compromised awareness, articulated that some of the helpers “show disdain for me.”

The time spent in actual therapy each day was negligible. They used any reason to shorten or cancel a session. “He’s just too distracted today.” “He’s too tired to work this afternoon.” “He’s not cooperating.”

Overall professionalism, especially of the night shift, was sorely lacking. While no one ever seemed around when the call light was illuminated, in the late hours aides would meet at the station just outside our door. Laughter and gossipy chatter weren’t even muffled. “Are we in a sorority house?” Dennis mumbled about one especially annoying confab that awakened him from sound sleep.

Every day of the first two weeks that Dennis was in the nursing home I could tell that he was losing ground. His anxiety and depression were palpable. I felt like we were trapped.

Dennis needed the bedrails if he was ever going to help pull himself up when slid down on the mattress. I was initially told that bedrails were considered restraints and were actually illegal. Absurd.

When I finally got the resident physical therapist to acknowledge in writing that the bed rails would be helpful, I thought they would be installed within the hour, or at least the day. They weren’t.

Early the next morning I paid a visit to the highest-level administrator in the building. He told me that the ball was in the court of Assistant Director of Nursing. He was sure the wait wouldn’t be much longer. Up until this point I had been firm, but polite, in my advocacy for my husband.

When nothing had happened by 3:30 that afternoon, I went to the office of the Assistant Director of Nursing, only to be told that she had already left for the day and no one in her office knew anything about bed rails in Mr. Watson’s room.

I snapped, shouting “What the f*ck is the matter with you people? Doesn’t anyone here give a shit about your patients?” Heads began peeking out of doors. I started crying—more like wailing—and shaking. No one did anything but back away from me. I returned to the room and vowed to Dennis that I was to get him out as soon as I could.

Within thirty minutes I was told the order for the bedrails had been given to the maintenance department. The handyman arrived with the rails within the next 20 minutes. It took him about ten minutes to screw them into the holes in the bedframe meant to hold them. Why did I have to be pushed to a breakdown for something so simple?

The only way I would be allowed to take Dennis home would be to sign a document that said that I had been advised that he was not ready for discharge. I was urged to engage 24/7 caregivers for several weeks and was given the contact info for an agency that could provide them. I was told by the agency representative—who was in a completely different time zone—that the round-the-clock care would be for both of us. “You can rest and they’ll take care of things…fix meals. wash the dishes, do the laundry.” It was just what I needed, and I agreed to pay the small fortune it would cost.

It was the middle of February and a snow and ice storm hit the night before my husband’s discharge. A caregiver was going to meet us at home. Dennis left the nursing home in a van outfitted for wheelchair transport. I arrived about ten minutes before Dennis did.

I saw my wonderful neighbor all bundled up shoveling our steep driveway and trying to chip off the ice so it would be less hazardous. I also saw an unfamiliar car parked near our driveway with an unfamiliar young man in it. After hugging and thanking my neighbor, I went to the parked car and asked, “Are you the caregiver for the Watsons?”

“Yeah.”

“Could you maybe help with clearing the driveway?”

“No, I don’t have the right shoes,” he said pointing to the open-toed slides on his gym-socked feet.

In that instant I knew that I had been sold a bill of goods about the wonderful caregivers that would be so helpful and kind. This young man, who had not yet completed his GED, had just started with the agency and had no idea what he was supposed to do. So, he sat on the couch and played with his phone. When I asked him to help me transfer Dennis into bed, he said, “How do I do that?”

The next caregiver was much better. She didn’t look for anything to do to help me while Dennis napped, but I was relieved that she had basic skills and a pleasant personality. She told me that she was happy to have been placed in our home. “See you in the morning, sleep well,” she said when the night shift caregiver came in.

But we didn’t see her the next morning. She didn’t show up. After three hours the night caregiver couldn’t stay any longer. The agency had no idea where the missing employee was but her roommate said she had to leave town on short notice.

I was at my wit’s end. Maybe I was wrong to bring Dennis home. Maybe I made a huge mistake that would jeopardize everything.

Dennis was eligible for several weeks of home rehab before out patient therapy could begin. That didn’t go well either.

The first time the PT came to our house he asked what our goal was in rehab. “To get Dennis walking again,” I replied. He smiled wanly and offered no encouragement.

In the next session I asked why he thought it was better to use a wheelchair to move Dennis short distances in the house rather than try to walk him while holding the gait belt when two people (myself and the caregiver) were available. “I’m a professional,” he said defensively. He then proceeded to describe his educational credentials.

I decided then and there that we would only allow people into our lives that offered their best positive energy in Dennis’ recovery. We always called our home “Rockaway,” in part as a tribute to the numerous boulders that glaciers left in Ann Arbor as souvenirs, in part to celebrate the six rocking chairs we enjoy, and in part because we love the chorus of the Bruce Springsteen song:

Rockaway these days, rockaway these nights

Gimme something to last me, baby, till the morning light

I ain’t looking for trouble; I ain’t looking for a fight

Honey, rockaway these days, rockaway these nights

My goal became to turn our home into a happy place of healing—despite the ever-present sadness in my heart. Such sustained sorrow forms a psychic scar that never goes away, but you have to learn to live with it. It’s an ache in your soul that has to be overlooked in order to move forward.

Dennis started his outpatient therapy in middle of that cold winter. Getting him there required putting a warm jacket on him when he could barely coordinate getting his arms in the sleeves. Then his caregiver and I had to transfer him to his wheelchair and carefully maneuver him through the transfer to the car seat. The heavy wheelchair was folded and lifted into the trunk. When we got to the rehab center the process was reversed. Before 8:30 a.m. I plumbed the depths of my patience and then I had to dig deeper for more to get through the session and then home again. Eventually it became routine.

It didn’t take long for me to realize that the Occupational, Physical and Speech therapists working with Dennis were fantastic. They immediately understood and appreciated his relentless need to be a smart ass. When asked, “Can you raise your left foot?” he quipped, “For enough money.”

Bob Marley singing “Get Up, Stand Up, Stand Up for Your Rights” became Dennis’ inspirational theme song as he was raised from his wheelchair to begin each session. The therapists in the gym, and even other patients, sang along. Every accomplishment was cheered with a high-five or fist bump. Rehab was fun for him and he worked hard.

I wanted to make sure that my husband could do as much as possible at home to contribute to his therapy. So, with the help of our good friend Tom—who is gifted in many ways, including the skillful use of power tools—our house became Rockaway Rehab. Grab bars and railings and a bedside support post made everything a little easier and safer.

Dennis’ caregiver Naja is the perfect person to keep his momentum going. They’ve bonded in a sweet way. She can read his eyebrows. “Am I getting on your nerves,” she’ll ask when one of them is arched. “No,” he always answers. “Not even a little?”  “No, not at all.”

At one medical appointment the doctor asked to see Dennis walk down a hallway with his walker. Naja got him up and as they walked she cued him on how to maintain his balance with a wide stance. The doctor assumed she was a licensed physical therapist. “Her cues are perfect,” he said. “You’re lucky to have her work with Dennis.”

So, one year in this is where we are: The wheelchair is rarely used anymore. Dennis can ambulate with a walker for short distances. He has a muscle stimulation device that helps him raise his left foot. Holding on to the handle of the treadmill, he’s walked by himself for twenty minutes.

His improved balance makes everything a little easier. Dennis still needs assistance with every aspect of activities of daily life, but he’s more able to help himself in dressing, grooming, eating, and getting in and out of bed.

Speech therapy has brought steady improvements in his ability to talk more slowly and enunciate. He’s still not easy to understand at times, but knows what he needs to do to be a better communicator.

On Saturdays, while I go grocery shopping and run errands for a couple of hours, his caregiver is a gloriously kooky woman named Denise. She’s an artist, photographer and stand-up comedian. They play trivia games and sometimes watch her comedy club sets on YouTube. They listen to the Beatles and watch other groups from the British Invasion-era. He enjoys every minute.

My sister Kathy and her husband Marc (who is an authentic saint) come to visit us at Rockaway each week. She loves to cook and always brings homemade casseroles and soups that get me through several days with minimal time in the kitchen. Marc and Dennis watch TV together, old movies and Michigan football games being the favorites.

Our lives are not joyless—just complicated. Mine is also really difficult and exhausting. The key to keep on keeping on is to keep counting consolations: Dennis is not in pain, he enjoys good food, good music, good friends, and he’s certain that he’s dearly loved by many people. His wicked humor and humanity are intact. Knowing all that helps.