Saturday, November 30, 2019


Please note: this is a personal post, not a windsurfing post. 
Time has come to say goodbye. More than 60 years have passed since this picture was taken. In my eyes, her beauty that is so obvious in this picture never waned, it only matured. Even when she was in her high 70s, comments how good and healthy she looked were common. Very few knew the true story.

She raised 4 children, sending them all to college. The first-born became a social worker, helping those in need. The second one became the first doctor in the family, as she often proudly pointed out. He was the one who flew away as soon as he was 18 - first to study at the other end of Germany, and then to the US, where he learned and turned - from a scientist into an entrepreneur. The third child, often a trouble maker as a teen, became CEO of a public company. The fourth child studied medicine and became head of a well respect child psychiatric hospital. As her children grew older and eventually left home, she devoted her energy to social efforts through her church.

Her health troubles started before the fourth child was even born. I remember many times where she was in the hospital, often for surgery. She ignored her illness as much as possible; I don't recall ever hearing or seeing her suffer until I was well past 30 years old. When her husband got sick before he turned 60, she stood by his side for the many years of decline. But seeing him suffer, and (in the final months) coming home to the empty house they had built together, took its toll: she developed diabetes. For decades, ignoring her health problems had worked well, but for diabetes, that was the wrong strategy. So she became a dialysis patient. Her hope had always been to make it to her 50th birthday; she was almost 75 when the dialysis started.

By now, her list of medications had grown to two dozens, including opiates to fight the constant nerve pain that was the consequence of other drugs, and had caused her to loose all feeling in her feet. That made dialysis, which is never easy, even harder for her. But she concentrated on the 4 other days per week. Long trips, which she had enjoyed her entire life, were out of question now, but she enjoyed her frequent trips to picturesque nearby towns, or to the theater. Even several falls that led to broken bones slowed her down only temporarily.

Last summer, she finally received medication that made her original illness almost disappear. Encouraged, but also worn out by three days of dialysis per week, she entered the waiting list for a kidney transplant. New plans were made for trips to the Baltic Sea and to the US, pending a donor match and one more surgery. But at the same time, her general health declined. Pneumonia and shortness of breath set in, with regular extended visits at the university hospital where she received the best possible care.

After a final visit to her favorite town with her dear friend, our former priest, she fell while getting out of the car. She still drove home afterwards; went to dialysis as usual the next morning; and wanted to go back home, as usual, too. But the doctors ordered a CT scan, and initiated an emergency surgery to stop bleeding from the fall. The surgery went well, and she was talking again the day after. But then, pneumonia and sepsis set it, and she slipped into a coma. 

The doctors managed to fight the infection, and she regained consciousness several days later. Her  children and grand children were at her bed every day; even "the American" and his daughter had come to be at her side. Her condition improved to the point were she was able to breathe without machine help for part of the day, and where she could answer questions with nods and head shakes. But the final ordeal had used up all of her reserves. After the initial improvement, she started being more and more tired; sleeping more and more; and needing more machine help to keep breathing.

She had often made it clear that she did not want to prolong the final stages of her life. In her living will ("Patientenverf├╝gung"), she had declined to be kept alive by artificial breathing and nutrition. When the doctors had originally intubated her, if was an immediate life-or-death situation, with definite hope for a full recovery. However, after three weeks in intensive care, this hope was almost gone. Was time to respect her wishes, and let her go? 
I wrote the above 3 years ago. We did not know then that she had contracted influenza in the hospital - one more infection that often kills, but which she beat. She fully recovered, and was back home a couple of months later.

She continued to enjoy life even as her health continued to worsen. Over the last years of her life, she had several more falls, which required a shoulder and a hip replacement. When I came to visit her two weeks ago, both of these needed to be replaced again, but her poor overall health would have made any major surgery extremely risky, and prospects for another full recovery extremely poor.

Pain had been a constant companion for my mother for decades. The opiates that she had taken for more than 15 years just barely managed to control it. But in the last few months, she enjoyed a relatively painless time thanks to medical THC, for which she was very grateful. However, after 8 years on dialysis, her body had become too weak to handle it anymore. On the morning after her final dialysis treatment, she awoke early from pain, and neither opiate pills nor THC drops helped. It took a visit by a palliative care doctor and injections of stronger opiates and tranquilizer to let her sleep. A day later, she made the final decision to stop dialysis. In this, she had the full support of her various doctors and her family.

As the news of her decision spread, many of her friends stopped by or called to say goodbye. We had a big family gathering with all her 4 kids, two grand children, and a few more family members the following Saturday, which she (and we) enjoyed very much. The support of the palliative care team helped to keep her last days free from pain. She passed away in her sleep in the night from Monday to Tuesday. 

Her four children all experienced her differently, and formed their own image of her. But she was very much loved by all of them. I will remember her as a loving and caring person, and as the strongest woman I know. Goodbye, mom.

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