Life after Life

We sat together in the day room of the Alzheimer’s unit. I had eased his tall, undirected body into the sturdy, leather-padded chair and cooed comfort at the man who used to be my husband. He had long forgotten the role that absorbed him for over 40 years. He was exceptionally agitated today. Each time I sat him down, he tried to get up, to keep moving, to continue an endless search for a forgotten something in an unremembered place. I patted his arm in an effort to redirect him, but he looked blankly through me, oblivious of my touch, unable to acknowledge my existence. A lamp, a table, or his once-adored wife had the same nothing meaning to him now.

My husband, Richard, lived with Alzheimer’s disease for 16 years. His lingering death came in bits and pieces. By the time his body exited our home after 13 years, his mind had already departed. We lived together longer than it was safe and sensible to do so. For three bleak years, I prayed for the everlasting nightmare to end; I existed, but I had forgotten how to live.

Writing down the pain supported my evaporating life. The publishing world rejected my memoir and death squirreled the words away. Stepping away from the written anguish was an elemental survival step. The book lay on a forgotten shelf for years.

Rescuing my life was a hit and miss proposition. I had no master plan and little direction in my play-it-by-ear approach to the future. My spirit, though battered and bruised, was intact, but my packaging was shabby and faded. Bedraggled remnants of my former self bore bitter witness to a war waged well, not won.

A worn and wrinkled stranger confronted me each morning as I sought to reclaim my erstwhile beauty in front of the unforgiving, full-length mirror. I had changed into a dowdy vestige of my yesterday’s self and never had time to notice. Moving on meant separating the person I once was from the zombie I had morphed into along the way. I was no longer a wife: my married-widow role was over, and I was single again. Solitary survival was a waiting challenge.

I began to rebuild my social life with a mixture of frenzy and reason. I was in a hurry. Circumstances had squandered too much of my dwindling life. To jump-start the process, I made an appointment with a recommended therapist and saw her individually for a couple of months. I needed to hear my voice validated and she listened intently for the money. I joined her therapy group for women in transition. It sounded like a perfect fit when she explained the concept to me in one of our weekly sessions. I would be joining other women like myself who were trying to reinvent themselves to start anew. Unfortunately, the make-up of the group did not live up to her description.

The women were all older; most had been with her for years and all seemed perennially stuck in the therapeutic process. There was no obvious transition occurring. I had hoped to learn how my peers were achieving their goals and gaining the courage to move on. What I found were women mired in calamities tying them to their pasts. Each one was going no further than she had already been. I was looking for the quick fix, a springboard to life, not a long-term crutch.

I dropped out and struggled to keep afloat. I took courses, joined groups of all kinds, bought a computer, and got online. I reconnected with old supportive friends who shared an intimate history of my coupled past. I tried new people on for size. Some didn’t fit, but a few became treasured friends. My family and all of these dear souls provided the ballast and the spice to keep me focused and growing.

After a year or so, I knew I was doing better. I began to balk at invitations that didn’t interest me and was less reluctant to be alone. My social cocoon had wiggle room, and an updated version of me was beginning to emerge.

Someone at one of the classes I was taking at the Cambridge Center told me about the Learning in Retirement program at Boston College. It was a stretch for me to apply and make the initial commitment to the program. I was nervous and excited about the new beginning. It was a something I wouldn’t have considered a short year or so before, but a choice that suited the up-and-coming me.

My first class met on September 11, 2001. I watched the horror of the day unfolding on the tiny TV suspended on the wall with new classmates who became friends by the end of that sad day. We bonded over shared misery and despair.

There would be no strangeness after that initiation. I became a member of the community. Filling the intellectual gaps and making up lapses of my formal education were an overdue luxury. Peer learning was the medicine my brain and ego needed; social interaction fed my empty soul. I drove to the Newton campus once or twice a week, parked free behind Alumni House, and took two courses each term, led a couple, and served on the Curriculum Committee.

When the program moved to Dover and started to flounder, I reassessed my options. The intellectual routine was now an integral part of my life. The friendships I made filled my social calendar, enriched my life, and nourished my brain. Giving up the experience was out of the question.

Some of my friends had switched to Harvard and encouraged me to apply. The admissions process worried me. I didn’t need any more stress. Rejection would destroy me, but I took the plunge. I arrived early for my interview. A friend was going into the building as I approached. We walked in together and she brought me into the Common Room and bought me a cup of coffee. Another member, one of my classmates from BC, came over to welcome me. As we sat, together, a tall genial man came by and joined us. We chatted about nothing at all for a bit. He suddenly announced he was off to interview an applicant who turned out to be me. My companions reintroduced us, and we walked off together to decide my future.

My application noted that I had been an Alzheimer’s caretaker for many years. That fact broke the ice. My interviewer had someone in his life who was suffering from the devastating disease. We talked about this and other things of course, but I am sure my personal struggle, not a lettered resume or a distinguished career, opened the door to HILR for me. He respected my will to survive.

I am now in my fourth year. I have taken two or more courses each semester. I have worked with the Shakespeare Players, have served coffee in the morning, have led a class, and have begun to write in earnest again. Suzanne Pemsler, my mentor and guide, has nudged me to mine the words from my past to write and write some more. End of life issues and the right to die are new resonating themes. Will there be a book someday? Who knows?

My Alzheimer’s knowledge has empowered me to shine a light and show the way to others who struggle in the place I managed to muddle through. Their identical stories of abandonment, anger, stress, fear, sorrow, and frustration are eerily familiar. I sympathize, empathize, validate, and refer. All cases have a different progression, but the outcome is the same.

My life is full again. I have made peace with my past, live in the present and look to my grandchildren to see my future. My trials and tribulations have stiffened my backbone and humbled my spirit, but I learned long ago to keep my funny bone handy and to tweak it as often as I can.

My story of loss and survival is exceptional only to me. Every member of our community of elders has their own story of loss to tell. Each time I walk into the Common Room of HILR I am reminded of the difficulties HILR members overcome and endure each day. We bring our aging selves, our past personas, our aches and our pains to class. We all were something else before we settled in to HILR. Over time, new versions of ourselves evolve, and we grow younger as we age. Our bodies no longer define us; some of us have tinkered with nature, but time won’t be fooled. Appearances are superficial gloss; spunk, joy, intellectual curiosity, and the ability to laugh in the face of life is the engine that keeps our motor running. Change is the crucible of our existence. Endurance is the key.

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