Aging Family in Decline at a Distance (article)

The phone call came at three in the morning; my wife Joni and I were sound asleep in our home in Boone, North Carolina. “What time is it there?” asked Dieter, cousin Ingeborg’s husband, calling from Germany. “It is three in the morning.” “Oh, I thought we were six hours behind you.” “No. What happened?” “Your mother is seriously ill. She had gone to a spa for ten days, but yesterday she ‘flipped out.’ She was walking along the streets hitting cars with her cane.” “Good grief. My mother?” “Yes, your mother; the police arrested her and she is now in a closed clinic.”

That was the first of three phone calls with similarly life changing content. Joni and 1 initiated the next one when we called two days before Thanksgiving in 1998 to tell her parents, Chris and Bob, that we were on the way home for the holiday, only to be told hesitantly of her mother’s diagnosis with cancer. The last of the surprises came four years ago. When I could not reach my stepmother Micky in Germany for several days on the phone, I called her best friend; she told me that Micky had fallen and broken her shoulder; she had barely survived and was in a nearby hospital.

Below, I describe the transcontinental challenge of caring for five years for my disoriented mother and the more recent care giving for my stepmother who lived in a small town south of Munich. Their lack of other close family caregivers, their personalities, and my relationship with each impacted how Joni and I adapted to our new and unexpected role. In comparison, stands the cancer and death of my mother-in-law who lived in our state with a loving spouse and family members within driving distance.

My nighttime conversation with Dieter was the beginning of my mother’s final journey; she had somewhat recovered from a recent minor car accident, but now she was seriously ill. Because of it, and in spite of our strained relationship earlier in my life, I had become accustomed to flying back and forth between the airports in Charlotte, NC, and Frankfurt, Germany, so I was on a plane the next day. When I saw my mother, she recognized me, but she was confused and disoriented; thankfully she did not recall any of her recent uncharacteristic behaviors. The competent and courteous clinic doctor said that she would be able to return to her fourth-floor apartment in Dusseldorf, “if” she were to recover.

What next? Ingeborg and I drove to the spa where my mother had stayed. At her bed and breakfast, we discovered that she had spoken of herself as Hildegard of Bingen, not Hildegard Petschauer. We did not have time to judge the quality of the staff at the facility where she was staying. Instead, we returned almost all of the ten thousand dollars’ worth of items she had purchased in her manic phase. To our amazement, except for one merchant, they were all understanding and cooperative in allowing for the return of the merchandise, providing more funds for her subsequent care.

The next day, I phoned various agencies to arrange for my mother to return home; to have Meals-On-Wheels bring her daily provisions and to have a nurse visit her regularly. In the end these efforts were in vain; the people I dealt with all knew what I did not yet understand, namely that my mother would never enter her apartment again. When I left a few days later, she seemed “normal” and perhaps at the moment she was. Subsequently she usually would be in a wheelchair. Her official diagnosis was “senior dementia” and subsequent legal efforts to have her declared “street capable” failed. A year later my mother was transferred to a facility where the excellent staff treated her very well and with great respect. My mother had fallen ill in the fall of 1992; she died in November of 1997.

As fate would have it, this was one of the busiest times in Joni’s and my life, but there were positive consequences of my mother’s decline, in spite of the huge distance between us. Most striking

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was the progression of understanding of how the relationship between my mother and me was changing and how my empathetic and loving partner, Joni, was able to moderate each of the stages we underwent. At the beginning of my mother’s decline, I simply caught a plane to Europe, not thinking that this latest of my mother’s difficulties would become permanent. After this first incident, we rarely had a near normal interaction; as a matter of fact, our interactions had not been “normal” for many years. We had been separated during World War II and after it when I was sent away to boarding schools. She was unhappy about my leaving for the U.S. as a teenager as well as about my first marriage. Both reactions were probably influenced by the unhappy marriage of her parents and her own divorce, but she accepted Joni. Even in her trance-like state, she never forgot who we were, and on occasion even returned to her earlier “normalcy.” But she ended these moments all too soon for us with the sentence: “That was another time. I am not there anymore.”

Neither Joni nor I realized the degree to which a parent (or other loved one) slides out of what we usually perceive as normality. Aside from the change to her physical presence, from then on our conversations were not about the weather and this or that world or local event. We spoke now only about her physical condition. Our conversations literally went from the fun Sunday afternoon chatter to the litany of pains; she remembered all her ailments from “before.”

We experienced a similar transition from “normal” with my mother-in-law Chris and stepmother Micky. “Normality,” as we knew it before their illness, that is, when Chris puttered around in her garden and Micky hiked in the mountains, are forms of disbelief and denial that an illness is real. That is why I contacted offices in Germany to allow my mother to return to her “normal” state, to bring her home. But “normal” could not be forced back into her life, neither could it into the lives of Chris and Micky, or ours for that matter. Illness and impending death change life.

Denial was the first powerful reaction I had to my mother’s condition, causing me to work to return her to the home she would never be able to live in again. The next stage involved sadness and guilt. We could do little for my mother. I was sad for her, sad about our changed relationship, and upset about having to work and not being in Germany. I quickly drifted into reflections about having left Europe more than forty years earlier and thus not being near my mother when she needed me most. When Joni and I visited her for the last time, one of her nurses told us that we had called and visited more often than most of the so-called “loved ones” of other patients who lived nearby.

The situation with my mother-in-law Chris was different because she was able to stay at home with Bob, and he and their children, and many of their friends, surrounded her with love and attention. Because she remained mobile until the end, she was able to enjoy several visits, either with all of us or with her four daughters and her daughter-in-law, to some of her favorite places. None of us was present when she died unexpectedly, and guilt feelings arose because of this or that omission, but in reality she was embedded in a family context and received in addition to this love, like the other two, excellent medical attention.

We were able to use these experiences when my stepmother faced her last few months. While she retained clarity of mind to her very last moments, her body too had undergone dramatic changes when she died in March of 2007. But by then, I did not undergo the various stages of denial and guilt as I had with my mother. Joni and I now understood the inevitable outcome and made arrangements to stay close to Micky in her apartment. Thus we could fulfill her minor wishes and somewhat ease her discomfort with daily visits in her fine county facility for the elderly.

Several uncomfortable issues arose in my stepmother’s case. For some time, one of her “best friends” became a cleaning woman who wanted Micky to alter her will, so that she would have access to the contents of her apartment and her bank accounts. This unique situation is not unusual for women or men living alone. Someone infuses herself or himself into the life and decision-making of the declining person and endeavors to alter plans for the last years or months, even the disposition of assets and body.

Many families are familiar with a similar sort of untoward situation, for example, when one family member is able to ingratiate herself or himself in the last few months of a relative’s life and change lifelong goals. Still another variant to the same situation

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comes about when one sibling is burdened with the entire care of the declining person and then is constantly questioned by the other siblings who live further away. Sometimes this very sibling is then also saddled with the expenses of a person’s few months’ stay in a hospital or other facility, and the funeral, while the others are waiting for their inheritance.

Historians may even add another perspective. Modem modes of communication allow for more interaction than ever before between healthy family and friends who live at great distances from one another. These modes also accommodate more participation in these persons’ daily routines during their decline. In the eighteenth century, even during most of the nineteenth century, friends and family living at great distances from each other usually knew of a severe illness or death only after it had taken place.

So, while families and friends tended to live in the same villages and towns, and in that way participated in the illnesses and death of fellow inhabitants, increased travel and trade for a time increased distances between people who were related and befriended, and these innovations created the inability to participate in these events. But now the very ability to communicate well can add an emotional and stress component to distances that we tend to ignore when we are healthy.

Our modern world enjoys other advantages. For example, both my mother and my stepmother built up a solid network of friends over the years. Micky’s closest friend protected her from harm during the time that her cleaning woman wanted to readjust her plans. That relationship in turn allowed Joni and me to stay in Micky’s apartment where I found many of the sources for my 2007 book on my late father, and thus I could feel a greater closeness with him and his widow.

Very important in these considerations is the following: my mother, mother-in-law, and stepmother each made extensive arrangements for their declining years in many respects, including insurance policies. They lived where government, both national and regional, helps when funds begin to decline or are exhausted. These women and our families could apply the resources of our middle-class environment and high levels of education to these problems. Others are not so fortunate.

There is an additional positive to these experiences and social situation. As phone services and the Internet have become more widely available over the last fifteen years, and intercontinental flights have remained relatively inexpensive, many friends and family can enjoy being in touch and supportive, even from a distance. Assuming that the nurse at my mother’s clinic was correct that we called and visited her more often than most other relatives of patients, then the impact of distance was lessened. It is now not only issues of distance that make for continued support, or lack thereof, of a person in decline, but other factors that enhance or inhibit persons from participating in their friends’ and families’ most difficult moments. Some of those are family practices, cultural norms, financial wherewithal, and the inability to confront and comfort the suffering of a person who is absolutely miserable.

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