Slow Dancing with a Stranger (12 page)

Sitting on my desk untouched was the voluminous paperwork from the elder care lawyer. I was annoyed by the proposed strategy to shift assets and impoverish my husband so he would be eligible for Medicaid. I refused to take advantage of such a perverse legal loophole. There were families out there who desperately needed that social safety net.

I could divorce Harvey to protect my assets and continue to care for him, but that seemed like another obscene option that I would not seriously consider. Given Harvey's short-term prognosis from more than one doctor, I figured I could continue to tough it out for a few more years.

Nonetheless, it didn't seem to matter how I ran the numbers. I kept coming up broke in a relatively short span of time, even if I didn't consider my own future financial needs. Harvey hadn't had the foresight to protect himself nor us with long-term-care insurance.

Methodically, I started writing down all our assets and prioritizing what I would sell off first to pay for his care. The wine collection Harvey had built for us over the years was at the top of my list. What remained after paying taxes and auction fees might buy me not quite two years of care. But even this was conjecture, because I had not yet had the wine appraised, and the base prices were locked away in Harvey's head.

Each time I turned the key to open the wine cellar door, I choked back feelings of anger and remorse. In light of what was happening, I couldn't help but see the wine cellar as a testament to Harvey's self-indulgence and lack of planning. Every time I went down there, I seethed. Some days, I tried to hold onto the anger, thinking it might let me emotionally remove myself from a sense of responsibility for caring for a man who had been so self-centered. But in truth the fault was also mine. I had enabled and supported his behavior. Then I would recall how altruistic and giving he was to his patients. I saved one note from a long ago patient with unforgettable memories of the exceptional doctor he had been.

“Dear Dr. Gralnick,

It has been so many years (1972-1979) since my connection with you and NIH. The beautiful baby girl I finally succeeded in having is now a wonderful mother and teacher with three young sons. It was you who helped me stay ahead of the science long enough to render the pathogen still and make this enclosed picture of two generations of our family possible. I hope somehow you feel the gratitude I will always have in my heart. My thoughts and prayers are now with your family.”

This was the side of the man I chose to remember, hold onto, and honor with care. Everything else I locked away, just like the wine cellar.

At night, the fears did not stay in the cellar. I lay awake trying to figure out how to slow the financial bleed. The answer I kept coming back to was to bring Harvey home. What I discounted was my own physical and mental health. It was never part of the equation.

Around-the-clock home care was still expensive, but if I took a twelve-hour shift and worked part-time from home, I could stretch our resources for several more years. Over time the disease would slow Harvey down physically and even temper the violent outbursts as his mind shut down his body. I knew from my reading that eventually he would forget how to walk. There would come a time when I would no longer have to chase him or fear that he might elude me in the middle of the night.

If I personally managed the care, there would be no guilt that I was abandoning him. There would be no long drives in the dead of winter or worries that the nurses might quit. The daily fear that Harvey might do something to get himself kicked out of Copper Ridge would be gone. Most of all, I would be comforted knowing that Harvey was never neglected because of his behavior, never restrained or overmedicated.

I kept hoping that somewhere, deep in his dementia, Harvey would know my touch and remember he was loved.

All along my friends and family had been asking me the wrong
question. When they demanded to know if Harvey would have done the same for me, I could never easily answer them. Who among us can know with certainty how we will act until we are in the middle of a crisis? I imagine that the doctor side of Harvey would have kicked in. He would have done whatever he could to get me the best medical attention and put me into the right clinical trials. But would he have abandoned his career to take care of me, bathe me, diaper me, dress me, feed me, cater to my behaviors and personal needs? I doubt it. No. I know it.

Over time, that point seemed increasingly irrelevant. The real question wasn't what Harvey might have done. It was what I felt compelled to do as a loyal and responsible human being. If I had once temporarily left him for indiscretions that insulted our marriage, leaving under the circumstance no longer seemed like an option. The timeline of the hurtful episode overlapped with the earliest symptoms of the disease and the vagaries of his diagnosis like a bad dream.

It was late December, just two weeks before Christmas. That
day, I drove home from the office during my lunch break to pick up papers for a late afternoon meeting. It was something I rarely did, but it was not unusual for Harvey to be home around that time to let out our dog and grab a bite to eat. I hadn't called ahead, but there was his yellow Porsche in our driveway. I opened the door and called out as I headed upstairs to pick up project files in my home office adjacent to our bedroom. Suddenly the door opened and a woman I recognized from a work introduction, swept past me on the stairs and out the front door. Harvey stood in the doorway as I screamed out, pushing past him to check out the crime scene. The glowing embers in our bedroom fireplace were evidence that they had been there at least an hour or so. Two glasses of now stale champagne, the crumpled wrappings from presents exchanged, and our bed in disarray were the final insults. His lame apologies only exacerbated the situation.

Only after three weeks of private anguish could I be in the same room with my distraught husband, who treated me like a time bomb ready to detonate. He knew me well enough to fear my aloof silence. And I knew the threat of being exposed, like a nagging conscience, never goes away. With one or two calls, I could damage this woman's career and ruin her homelife as she had done to mine.

For my own dignity, I moved out of the house on the grounds of irreconcilable differences, even though we were equal financial partners in a home renovation well underway.

My refuge was the small home I had purchased after my first divorce. I had vowed to keep this Tudor retreat as an exit strategy, renting it out. Who knew that I would need it again?

Jason had chosen to stay behind, unsuspecting of what drove me away. So close to graduation, it made sense for him to stay. I had given him the choice, but his decision was still crushing. Determined not to let my decision affect our relationship, I commuted daily between houses to make dinner and maintain some sense of civility, leaving after homework was done. Jason didn't deserve to suffer because of our differences. Harvey, already estranged from his own son, played along.

We filed for separation. Several months later, we jointly came to a decision, driven by the renovation, that required Harvey and Jason to find interim housing. We would all camp out together at my refuge. Our six-month truce stretched out more than a year.

Once again under one small roof with no place to hide, Harvey seemed decidedly different. I attributed it to the strained circumstances of our relationship. Like a reality show gone awry, it became harder to maintain any pretense of normalcy. There were episodic tantrums and periods when he would retreat to live among the dusty rubble and debris of our family home, now more symbolic of our marriage than the dreams we once shared.

But the timeline of this painful episode overlapped with two years of missed diagnoses and the fact that marriages are complicated. The cruelty of Alzheimer's offended me more than his infidelity. I just couldn't hold on to my outrage. I had been drawn back by his helplessness as the disease took its toll. I steeled myself not to focus on what had been lost, but rather on what was left of Harvey and how to save it. Unconsciously I learned to live amidst the pain and survive on captured moments of joy. I lived in the moment, like so many caregivers and family members who forget themselves in the care of others. We concede only to being stoic rather than heroic.

In truth, Alzheimer's had saved our marriage.

Against the unfamiliar background outside my car window, my
lack of other options suddenly came into sharp relief. So a little less than three months after arriving at Copper Ridge, I made the drive there one last time. The nurses and I packed Harvey up. Then we brought him home again for good.

B
y the end of Harvey's first month back at home, I couldn't fathom why I had chosen this route. No re-entry for Harvey, even in a space called home, was without trauma and confusion. The new medications—a heavy dose of antiseizure drugs, comprised of sixteen Depakotes and four Ativans a day—did not reduce his combativeness. He was fiercely ambulatory and kept both hands perpetually clenched in fists so tight that his fingernails turned indigo blue. The nurses, so resolute that we could manage Harvey at home, now seemed less assured than before. We all felt boxed in by our conviction.

Not once did I consider how others might view my decision to bring Harvey home. It was irrelevant except for my son's concern for my safety. I knew how this disease brutalized families even more than the patients, who in time forget their plight. It weighed heavily on me because I didn't want my problems to inadvertently become his burden.

In the short time Harvey had been away, I had forgotten how much sleep I lost each night. Following his strange circadian rhythms turned night into day. I didn't stop to think what moving Harvey back home meant for my family. My three grandchildren, then ages seven, four, and two, were too young to understand why Grandpa Harvey walked in circles in the family room and never spoke to them. My explanation that he was sick didn't seem to make things easier. The fright in their little faces as they peeked into his room was heartbreaking. As an antidote, I helped celebrate every milestone in their lives and everything in between at their home. But I am left to wonder what memories of Nana's house they will share someday with their children.

Inevitably, friends and total strangers began to weigh in with opinions regarding my decision. Sometimes they celebrated my actions as a testament to love and loyalty to one's marital vows; other times they criticized my choices as self-destructive, a way to hide out and write off my future. I knew I was responsible and perhaps loyal to a fault. But my psyche was so scarred by what I had witnessed in the hospital and the nursing homes that no one could reach me.

Soon, my journal became my only refuge, my outlet for the
mounting fear and guilt—a substitute for screaming out loud since no one who might hear me remembered:

I screamed at Harvey last night for the very first time. I was not gentle as I rudely woke him up so I could change the sheets for a second time that night. I screamed that I needed his help and I wanted him to scream back at me. But he just sat on the edge of the bed, silent, unknowing, unable to fathom my pain. I washed him up and changed his wet clothes while he tried to wrestle and push me away. It could have been worse. Then I felt so guilty because it's not his fault; it is the disease that is my enemy. I feel like I am disappearing with him into an abyss. I will never scream at him again. But where will the sound of my pain go?

Other times it was hard not to take our growing isolation personally.

We've been abandoned by others because Harvey isn't who he was, but should I be written off too? All I want are options to fight the good fight; options to seek therapies that buy us time and the chance for remission; options, even when weak, to let Harvey refuse therapy, to make peace and say good-bye to me. I want him to thank me for staying true to him. No one deserves to be forgotten in life because their disease is without hope.

If Harvey was going to stay at home, I needed more help. After
ten years, I was emotionally and physically running on empty. I had already made the decision to hire a male nurse to assist us in rotation, but finding someone with medical experience, physical strength, and the right mind-set to be a team player would take time. And Harvey had to accept him too.

The takeaway from the Copper Ridge nurses and social workers was that if I didn't create the right team to back me, I would be useless to Harvey and have serious health issues of my own. I couldn't afford either of those scenarios.

The agency route for nursing aides was my last resort. The work required special training and yet they only received half the hourly agency fee. I was on the side of the nursing aides because, by all measures, I was one of them. Harvey's behavior disorder atop the dementia demanded continuity of care because transitions were fraught with dangerous flare-ups.

By default, Olga was our anointed team leader. Just five feet tall, she was spunky, efficient, and bossy enough to make her height a nonissue even when dealing with Harvey who towered over her. Olga had an opinion on everything. Hla, an infinitely sweet and patient young woman, had weathered the challenges at both facilities and bonded with Harvey in a quiet, very Zen-like way. They seemed to understand one another without speaking. Years later, after she left to marry and have children, she returned to visit him and tearfully hold his hand.

Word of mouth and friends with firsthand referrals also aided my search. I always had my eye out for real nursing talent and credentialed backup. But there were difficulties with my recruitment approach.

A friend of a friend referred a seasoned female nursing aide whose patient had just passed and who was looking for part-time work. I didn't want my home to be a revolving door of auditions so I arranged to meet her at a nearby Starbucks.