by Diane Rehm
Changing Roles
Like many women of my generation, I came into our marriage believing, and being totally comfortable with the idea, that my husband would take care of everything concerning finances. He would write the checks, he would pay the bills, he would oversee the savings needed for the children’s college educations, he would take care of it all. Having John attend to the finances was a repeat of how my parents had operated. After all, I was just a homemaker, as my mother had been, caring for two young children. John was the one bringing in the income that allowed us to buy a home and put food on the table. In those early years, I never questioned his judgment about how the money was being used, because I trusted him completely. And he was good at it!
There did finally come a time, however, when I realized I needed to have a checking account of my own. I had become frustrated one day as I was shopping for a Christmas present for John. Finally, I found exactly what he’d asked for at a department store a few miles from home. I took out what I thought was a legitimate credit card, only to be told that the store no longer honored that particular card. I was furious. I had to return home, take a check from John’s desktop checkbook (it was a joint account), and go all the way back to the store to purchase John’s gift.
That night, I insisted to John that I wanted to create a checking account separate from his, one that would also be a joint account but would allow me to carry my own purse-size checkbook. John was furious, feeling somehow threatened by the idea that the checkbook in my hands would create a kind of independence for me that he neither anticipated nor wanted. It was the beginning of several weeks of silence between us.
When we finally managed to work out the division of financial responsibility, he continued to manage the “big” bills, like the mortgage, insurance, utilities, and savings, while I took over writing the checks for food, clothing, and miscellaneous household expenses.
By the time John retired from his law practice, in January 2001, he had spent five years planning for what would come next. He underwent a year’s rigorous study and training so that he could serve as a volunteer docent at the Freer and Sackler Galleries of Asian art in Washington. He also became a volunteer at Reading for the Blind and Dyslexic, as well as a volunteer for the Washington Home & Community Hospices.
All went well for several years. We purchased a bright yellow Volkswagen Bug for him to travel around in, a car which suited him well and which he adored. And he loved his freedom, his independence, and his volunteer activities.
Then, beginning in 2005, came a series of automobile accidents, all within a period of eighteen months, each of them minor but nevertheless worrisome. After the third collision, John came home, pale and shaken, telling me he had hit a parked car on a side street near our home. Apparently, he had fallen asleep at the wheel. He was traveling slowly enough so that he wasn’t hurt, and the damage to both cars was slight. However, three was the magic number for the insurance company to inform us they were canceling his insurance.
Hearing the news, John said simply, “Well, let’s just find another insurance company.” But I was worried and wary, and suggested that before trying to find another insurer we might do best to have him tested.
First, he was required to undergo a series of psychological exams at a nearby hospital, and, following that, he was given an actual driver’s test with an evaluator. When he and the testing officer returned from taking the car out, the examiner said he would like to speak with me privately before talking with my husband. What he told me didn’t surprise me. He said that he’d almost stopped the driving test after two minutes, since John was on the wrong side of the road as he tried to make a right-hand turn. He said that John’s reflexes were no longer quick enough, that he had no clear sense of how to safely maneuver the car, and that it was his firm belief that John should no longer be driving. The tester, also a psychologist, indicated he found serious shortcomings in the results of John’s tests for a man of his education. He asked how I felt John would react, and I replied that he would probably accept the facts without argument.
In fact, John said he was actually relieved, that he no longer enjoyed driving because it was creating too much anxiety for him. He knew he could rely on public transportation, and he was happy he hadn’t harmed anyone while he had been at the wheel. The loss of the ability to drive was the first stage of John’s gradual loss of independence, and the clear shifting of responsibility from him to me.
There were other disturbing changes in John that I began to perceive, primarily physical ones. For example, we would go for late afternoon walks together in the neighborhood, and I started hearing something different in his footfall. He, a man who had a posture and a stride I’d always admired, began to shuffle. He was not picking up and placing his feet on the ground as he had once done. When I asked him about it, he just shrugged his shoulders. It didn’t seem to bother him, but it began to worry me. Also, there seemed to be much less movement of his arms, which previously had swung freely. A tremor developed in his hands, even as they rested in his lap. Putting these new behaviors together with the comments of the psychologist, we both felt it would be wise to seek professional help from a famed neurologist at Johns Hopkins University Medical Center, who had assisted in diagnosing me with spasmodic dysphonia back in 1998.
Dr. Stephen Reich is one of the most renowned specialists in Parkinson’s disease and other neurological disorders. He had moved to the University of Maryland at Baltimore, and so, in late 2005, we made an appointment to see him. After a comprehensive physical and psychological examination, Dr. Reich concluded that John had symptoms of Parkinson’s disease, a slowly progressing degenerative disorder of the nervous system. The disease, according to The Merck Manual of Medical Information, affects about one in every one hundred people over sixty-five years of age. John was seventy-five years old at the time of diagnosis. Dr. Reich prescribed levodopa and carbidopa, the primary drugs given to individuals with Parkinson’s to help decrease the symptoms of the disease. They are sometimes given in combination with other drugs, which John tried to use, but which had significant and deleterious side effects.
Being given a diagnosis of a disease for which there is no cure, and which will inevitably worsen, is depressing, to say the least. In fact, depression is something many with Parkinson’s experience. In addition, John’s back was creating great problems for him, making it increasingly difficult for him to stand straight or even, at times, walk. In 2011, he opted to undergo back surgery which alleviated his pain for about a year. Eventually, however, severe pain returned in his back and legs and continued for the rest of his life.
Several months after we moved from our old home to our condominium, John brought me his checkbook and said, “I’m having trouble balancing this monthly statement. Can you help me?” I realized he had swallowed a great deal of pride to come to me with that request, and I was stunned. It had in fact been he who had taught me to balance a checkbook. But I simply said, “Sure.” I managed to find the error in his calculations fairly quickly and handed him back his statement. I was worried but tried not to show it. He thanked me, and nothing more was said.
The very next month, however, the same problem occurred. I heard him muttering in frustration because he couldn’t balance his checkbook. After I’d managed to put things in order, I heard words from him I would never have expected to hear. He said, “Maybe I’d better turn all the finances over to you. I seem to be having trouble keeping the simplest numbers straight.” I looked at him and saw the sadness in his face, realizing what a powerful symbol of giving up this was for him. Thinking back, I recognize that we both wanted to weep.
A New Model for Living
Beginning in that moment in 2011, John carefully briefed me on our total financial picture. I began paying all the bills, overseeing our savings, our investments, and our retirement plans. I realized that I actually had more ability in this area than I’d previously given myself credit for. The picture was complicated, but with John
’s initial assistance, I knew I could do it.
And of course, I had to do it! How fortunate that I had pushed back so many years earlier and demanded my own checking account. Otherwise I might have been left totally in the dark, as I know many women and men have been, about what is owned, what is owed, and how to treat the many obligations a family incurs.
Over the years I’ve heard from many people, especially women, who were absolutely stunned to finally realize the enormous number of obligations involved in operating a household. And who have had to face the financial secrets that one spouse may keep from the other, debts accumulated or separate accounts which have been kept private. I thank heaven that this was not true in our case.
There were many questions about our finances that John couldn’t answer, however, so we called on our dear friend, John’s former law partner and financial adviser, Bob Struyk. Bob had been the managing partner of the Minneapolis law firm Dorsey & Whitney when John and David Busby’s firm merged with D & W.
Back in 1995, Bob had created a will for us and had mapped out a secure financial plan, assuming what we all assumed at the time would be our continued good health and well-being. He had remained our good friend and adviser, and now he came to Washington to help us sort through our future financial situation in the light of our newly revised outlook.
John and I had never taken out policies for long-term care, recognizing just how expensive they are, and that, should we need it, we could probably cover the cost ourselves. Now I realize that had we begun to carry long-term-care insurance in our fifties, while we were both healthy and in the workplace, we might have been better off.
And then we required new wills, and the naming of new trustees. On Bob’s recommendation, we hired a new attorney to deal with the changes needed to ensure that our children would replace John and become executors of our estate when we were dead. A new financial overseer and investment adviser helped us on the best strategies to see us through both John’s need for care and my need for continued subsistence.
The expenses associated with assisted living for John brought on many sleepless nights, but I knew that, as long as I went on working, I would be able to manage. Basic assisted-living costs for John added about $7,500 per month to our overall expenses. When he suffered pneumonia in March 2014, we hired a twelve-hour personal caregiver to be at his side during the day, at an additional cost of $1,200 per week. The agency that provided that special aide charged another $266 per week. All of which totaled more than $13,000 per month. Had John’s savings and our investments toward retirement not been extensive, we would never have been able to afford this kind of care.
John’s careful management of money during his working years came from having witnessed the lack of care with which his father managed money. Indeed, it was his mother who saved as much of their tiny income as she could, realizing that her husband was paying very little attention to providing security for their family. John grew up aware of his mother’s concerns, and he told me of witnessing some of his parents’ terrible arguments about his dad’s carefree attitude.
I’m angered when I read about people who’ve lost their savings, their investments, even their homes, due to illness or natural disaster striking. Those who are supporting a family on minimum wage or Social Security or welfare, or who become homeless through no fault of their own, make me bow my head in sadness. Congress has done so much recently to affect the working poor negatively. And now, with the 2016 election process already under way, I fear there will be less and less assistance for those in need.
Up until John’s diagnosis of Parkinson’s disease, in 2005, we had both enjoyed good health. But the same is true of others who have crashed. John and I often talked about how lucky we were, shaking our heads and wondering why we should have been so blessed.
The Roller Coaster
Sometimes I feel as though I’m caught in an emotional landslide. There are days I awake at 5:00 a.m., feeling I can’t face the next moment. But I know I must get out of bed.
The week after John’s memorial service, I knew I had to get back to work. The Diane Rehm Show had then been on the air for thirty-five years, and people relied on it. Listeners knew John had died, and many sent letters of comfort and condolence. I read each one, and was able to respond to many of them.
At first it was hard for me to concentrate. Having spent so much time each day worrying about John, I found it difficult to turn my mind completely to my work without memories of him and our life together distracting me. But work can be a balm, a salve for the soul of the mourner. I told myself not to forget that, and to remember that, no matter how successfully I was able to continue with the program and all it involved, I had to allow myself to mourn.
The grief comes in waves. I might be in the middle of an important on-air conversation on a subject involving, say, the Congress, while inwardly I am wishing John could hear it. And then I want to hear what he thinks about the subject, about the way government is or—for the most part right now—is not working. My mind drifts. I feel that impulse to call Brighton Gardens to see how he is. I might be out on an errand and think, Oh, it’s time to go see John. I wonder if it works this way for everyone.
Today, a lovely Sunday, I was out walking with Maxie when I looked over to Maxie Park, which is what John and I used to call the spot to which John walked Maxie after we moved to our condo. He walked him three times a day while I was at work, loving every minute of it. We live near a sector of the city designated for community gardens, and they’re constantly in bloom once spring comes.
Often, in the evenings or on weekends, we walked together through these gardens, talking over the events of the day. How I miss those walks and talks, holding hands, chatting with each other or with other dog owners. Our neighborhood is extremely well populated with dogs, and we inevitably encountered many people with dogs whose names we came to know. In fact, we knew the names of the dogs far sooner than we knew those of the owners!
Now Maxie has a dog walker who comes to pick him up every morning and returns for him at midday. But most evenings I’m home in time to walk him myself, and it’s at those times that I can still see John with Maxie, talking with him, petting him, and making me wish I were there with them both.
Our Bed
Last night, for the very first time since I was married, I moved to the center of our bed. It’s a queen-size four-poster, the bed John and I shared for many years, beginning when we first moved to our second home, on Worthington Drive in Bethesda, Maryland.
Up until now, and for all the years that John and I slept in separate rooms and then in separate residences, I’ve slept on “my” side of the bed. I couldn’t manage to bring myself to sleep anywhere else. “His” side was his, with a pillow there for him. There was an emptiness, of course, on his side of the bed, but it never occurred to me to shift and assume possession of the entire bed: always, his presence was there in my mind, head on pillow, turned either toward or away from me. But last night, nine days after his memorial service, I hesitantly decided to move my pillows to the center. I knew I would feel awkward, but I wanted to try. I spent the entire night wide awake, unable to shake the finality of the shift and what it represented.
Shortly after John and I were married, in 1959, we bought a lovely two-bedroom house, and we moved into it when I came home from the hospital with our newborn son, David, in my arms. The bed we slept in was a double, barely big enough for two adults, but we had no complaints; as a newly married couple, we were happy to share the space. When David was an infant, we frequently brought him into our bed, to watch him feed, sleep, and smile. Then Jennifer came along, and by the time she was three, it was time to look for another home.
The house we found on Worthington Drive afforded more space for each of us. David and Jennifer could have their own rooms, John could have a study, I could have a sewing room, and in our bedroom we could finally have a lovely queen-size bed.
The bed has always been such a powerful symbol—
of beauty, of love, of hostility, of anger, and of peace. I think of our bed in all those ways during our fifty-four years together, times when we were madly in love and physically enjoying each other; times when we were watching a television program together before sleep, laughing or commenting about what we were seeing; times of silence, when we weren’t speaking to each other, yet continuing to share the bed; times when one of us was sick and the other became the nurse-caregiver; and finally, the time when I moved to another room, because John had developed myoclonic movements affecting his entire body, causing him to jump slightly every few seconds. I’m a light sleeper, and, as a result, we decided I would move into what had been Jennifer’s room, since by then she had left for college.
I look back on sharing our bed as one of the most important elements of our life together. So much joy, so much fun, laughter, happiness, and physical warmth. Perhaps that is why I’ve been so reluctant all these years to move to the center of the bed. I’ve said to others, since John’s death, “I’ll be okay. I’ve been by myself for a long time.” But I realize it’s not completely true. Of course I can carry on, and I shall. My work is vastly important to me, and thank God I have it. I will go on rising at 5:00 a.m. daily and preparing for the day ahead. I will shower, have breakfast, dress, put on my makeup, take care of Maxie, get into my car, and drive to the WAMU studio.
But I am grieving. I realize I want to be by myself, with my memories and my tears. I don’t want to be in the company of others, even good friends, who are laughing and sharing ideas and stories. I’m reluctant to go downstairs to the lobby of my condo for mail, afraid I’ll run into a resident with whom I’ll have to exchange pleasantries, and even respond to condolences.