There were no alarms set to wake us for work, so we slept until we felt the need to get out of bed. Not even get out of bed; just up, not out. Anything that needed attending to could be handled over the phone or on the computer. If we needed groceries, I’d order from Fresh Direct. If we needed anything from the pharmacy, I’d call BioScrip for a delivery. If Steve wanted a new gadget, there was Amazon. We lived on bagels and tuna fish salad from The Corner Café on twenty-fourth street and sixth avenue and chocolate chip cookies from Trader Joes. The Corner Café opened on the spot that had been the old almost-landmark status Billy’s Topless bar around the corner from my old office. The whole corner used to reek of piss. Now, it’s a bagel place run by Evita; a lovely lady who knew me by name and always came through for me when I needed her. Cultivating good relationships with local merchants is an essential caregiver tool—if they know you and remember you, you’ll grow to count on them—and they will come through for you when you need them.
When Steve’s mom, Sylvia, was still alive, I’d sleep with one eye open knowing she was an early riser who’d go to the kitchen for her ritual bowl of Cheerio’s and skim milk so she had something in her stomach when she took her medication. Then she’d go back to bed until about eleven to rest up for her shower. It was not an easy task getting her to agree to tell me when she was going in to shower. I didn’t want her to fall and I finally forced her to use a shower chair so she could enjoy her beloved shower-time rather than fear it. Access to her bedroom and bath was through my office and after Syl died it took a while for me to realize the door in my office wasn’t closed because she was sleeping; it was closed because no one was using the room any more. It wasn’t easy shaking off her presence.
Steve was always big on sleeping. From the beginning of our relationship he slept a lot. It was his escape. He always thought he was dying; and then he was—thirty years later. Before he was sick, when he stayed in bed, it was okay for me to take myself to a movie or lunch or a museum and just leave him to mind himself all day. But after he was in recovery from one lung surgery, another stomach surgery or in the middle of treatment, I would end up staying in bed with him. It was our default setting. He wanted me close. He needed me close to feel safe. I was the one who reassured him “No. You’re not dying. Yes, what you’re feeling is different. It’s always different; every time.” So for years, literally, I was in bed with him. We’d watch baseball or movies or the shows we’d recorded the night before. When he was awake and engaged in a ball game, he was very much alive; he loved baseball. He would call the game for me, as though he was in the announcer’s booth. I think the last year of his life we missed maybe three games during the entire season. I miss that. It’s hard to watch a game without him. Even when we’d lie in bed and he’d be playing games on his iPad, we were together.
Together yes, but I was lonely. Having a universe that consisted of Steve and Sylvia’s doctors—Gruenstein, Matta, Gribetz, Azzoli, Swanson—and their respective staffs and waiting rooms, somehow didn’t cut it. The people involved in the medical aspect of my life marveled at my abilities as a caregiver and I was well liked and well respected. My other daily contact with cabbies, doormen, wait-staff and the super in my building, did not make for a very satisfying social life. If it had not been for the Internet, Facebook and email, my life would have been untouched by the outside world, save for the nightly news and talk shows.
Seven p.m. meant “Jeopardy.” Another Sylvia ritual that became Steve’s ritual—almost as a gesture to honor his mom. Syl would amble into the living room in one of her many floral housecoats and we’d watch together with Steve calling out his answers from another room. Every night like clockwork. After “Jeopardy” at seven-thirty on the dot, Syl would make her daily call to her sister-in-law Muriel. Every day without fail for years. When this pattern started to change, it was my cue that something was amiss. Sadly, as a caregiver, we can’t fix everything and in Sylvia’s case, the change signaled her demise. I hardly watch the show anymore. It’s too emotionally charged.
When Steve slept, I’d design checklists for his medications. These worksheets became increasingly complicated and I needed to keep simplifying them as his cognitive skills began to change. Adapting became a constant trial for me. Patience was the order of the day for years. When I finally told Steve I couldn’t do it alone any longer and we had someone come in to be a companion for Sylvia, I was still caring for her most of the time since I was the mind reader and we each knew what the other needed without words. Mother and son were my responsibility.
But when they were both resting and the house was quiet, the loneliness was unbearable. Television was my sole companion. My artwork had become too invasive to do at home, and I had taken a small studio with the hope that I could get there for just a few hours a week; it was not meant to be. I had to be within reach at all times. This scenario brought me to writing.
I cannot stress enough the value of “writing it out “ and putting your feelings on a page. Whether it’s scrawled on a napkin or kept religiously in a journal, writing can be your salvation as a caregiver. It’s portable. It’s quiet. You can pick it up and put it down easily. Your supplies are cheap, although in my case, I had a special pen and leather bound journal to make the entries more significant; they were for me.
The Internet was my other savior. Chat rooms. Journaling. Discussion boards. Medical research. Expert articles. Shopping online. I’d bounce from one site to another looking for solutions, experiences and companionship. When I found them, I embraced them. I respected them. I nurtured them. The loneliness didn’t vanish, but I was no longer alone. There were others going through what I was going through, and that was a comfort.
I learned in time that writing online was the most effective way, for me, to create a sense of community; to feel connected; to be a member of something bigger than myself. It’s as personal or as anonymous as you want it to be. But it’s “writing it out” that has a cleansing, purging effect. The sense that someone might be listening helps some people. The privacy of a diary helps others. But write. At least try it.