Marilyn, my beloved wife of more than 50 years, died on December 29 of complications associated with Alzheimer’s. It was a fortunate death, though not, in the usual sense, a good death. She had lost 95% or more of her mental capacities, and had no obvious sense of who I was or of what was happening to her.
She was a wonderful woman, the love of my life, and I miss her dearly. When the kids and grandchildren came in from the Coasts to see her in Memory Care, she always had a big smile on her face. I don’t know whether she recognized them, but I prefer to believe that her wiring was so strong that she knew, unconsciously, who they were. Even in the last stages of her Alzheimer’s-destroyed-life, what a smile broke out on her face every time I walked into her apartment. We have a family photo of her reading to her three-year-old grandson in her lap, a paradigm of who she was and the simple happiness we enjoyed. I have always found a deep sense of satisfaction in the love we were able to give and receive, an experience depicted by that picture from a dozen years ago.
Initially, I decided not to write this very personal blog, but I decided otherwise because of its therapeutic value as well as a medical experience in the early ‘90s. As a result of a bout with serious prostate cancer and its inevitable surgery, I was surprised by the number of young men—and a few women--who wanted to talk with me about the experience. At the time, I had a number of projects at Ralston Purina, so had done a great deal of interviewing and had become a familiar face at headquarters. The questions, especially from the youngest generation, were about how I handled the news of cancer, my prognosis, the degree of success, the sexual implications and the potential for incontinence. I’m experiencing a similar number of the younger generation asking questions about Alzheimer’s and my wife’s death. It’s not often that people can talk about their own concerns and fears with someone they trust who’s had some success in dealing with those fears.
Death, of course, is a more traumatic and final experience for all of us. But having dealt with what can only be considered an “ambiguous loss” for more than two years, I had come to believe that with my extensive background in psychology and counseling and a phenomenal number of resources I’d be able to manage the finality of her death very well. But still, I was surprised that the experience of death took me by some surprise.
When it came to resources, probably no one on earth had more than I. My eldest daughter, Director of Fundraising for the research foundation, CureAlzheimers, has the ability to access resources from Harvard’s Alzheimer’s research center. Her husband is a research physician with an awareness of the physical and psychological implications of Alzheimer’s. My middle daughter was involved in Alzheimer’s research at UMass Lowell. One of my very best friends, Libby Bellinger, is a gerontologist with counseling background who also works for a long-term care organization and coincidentally, dealt with the personal issues of her own mother’s Alzheimer’s disease for 18 years. I have access to top physicians at the UMN medical clinic. And to top it all off, my wife was involved in research at Mayo Clinic with a physician who was inevitably and always available to me personally, or by email. With all that, it was improbable that I’d be surprised by death.
Furthermore, lacking financial worries, I was able to carry off all the right things for the management of emotions and life. I treated myself with care, putting off as many decisions as possible, and made certain to access the friendship of colleagues and neighbors. I was scrupulous about my routines, careful about food selections and kept up most of my exercise program.
Finally, my children and I decided months ago not to have a funeral, but instead to have a celebration of her life, inviting friends, neighbors and colleagues for drinks and appetizers. Indeed, the invitation was clear: “No liturgy, no ceremony, no rituals, no homily . . . just mingling, conversation, and even laughter.” And even though we’re not having the party until the end of February, I’ve been delighted by the overwhelming positive responses we’ve received toward that celebration.
How did the grief surface?
But in spite of all the decisions and care, her death has been difficult. There were tears at the strangest times of the day. I finally realized that they flowed when I noticed an especially sensuous gesture either between two others or in a TV show. Marilyn never walked into my study without her hand on my shoulder and usually a smile. I also noticed that though most of the time I was careful in the food I selected, I utterly failed to manage portions, gaining 40 pounds over the past 3 ½ years. But what really frustrated me was my inability to focus on tasks, especially on creative writing. I just couldn’t force my brain to engage. I’ve always prided myself on my ability to set worries aside, put them in a box, and go on with the task at hand. That didn’t work, especially the last two months as it became clear that Marilyn was dying. It was as though my creative juices had been wrung out of my body. But most significantly, in spite of keeping to my sleep routines, I found myself tired out—almost daily for the first two or three weeks after her death. I still have to take naps three or four times a week.
So what have I learned about grief?
Thus far, I’ve learned several things to help me process my grief more successfully. I don’t anticipate that the grief will ever be fully resolved and I’m not certain that I want that. But I do want to go back to life, giving myself wholeheartedly to my work.
First, I can’t stress how important it is to take care of yourself. My objective was to make certain that I kept involvements to the minimum and always do the things that are important to me. My children, as well as many friends, emphasized the necessity of that self-management. My children made it very clear to me, reminding me of their support, that I was to limit my visits to the home to just once or twice a week and get on with my life. Knowing Marilyn’s ever-Germanic orientation to task and work, I’m certain she would have approved and insisted. After all, Marilyn would not know that I’d been there two minutes after I walked out the door. I have a great awareness that my resources were unique. Still, to the degree possible, in whatever your situation, if you are to find hope and optimism, you must put yourself first. This is not a time to make sacrificial decisions for others or give others a lot of time.
Second, it’s important to access your support system regularly, and if you don’t have one, to seek one out. Most resident homes have group meetings and systems that you can tap into. Identify the friends who’ll do things with you, let you talk, and are simply willing to listen. They may not be the friends you expected, but they’re out there and they’ll do some caring for you. On occasion, I found it important to simply ask whether a person had time to talk with me. I learned to read the sign language fairly accurately so as not to overstay my welcome. When a person inquired regarding my wife, I usually shared two or three sentences. If they were desirous of further information or open to listening, they would inevitably make that clear to me after I’d shared just a bit.
Finally, it’s important to recognize that you’re not going to be able to predict or control your own responses to death. Give up the notion that the control mechanisms you’ve used to succeed in your professional career will work when facing a death in the family. Thinking you’re in complete control of your memories and emotions sets you up for failure and even more grief.
I have long been an optimist and practitioner of a “sanctified nonchalance.” In other words, I don’t hold tightly to life, but view it as a gift to be used for myself and others. And I gather people around me who hold similar views. Rather than focus on what I’ve lost, I face the future grateful for what I had. So I’m certain that makes the surprises of death easier for me than others. But still, as my friend Libby Bellinger said, when talking about my inability to control my emotions, “it kind of slips up on you, doesn’t it?”
