Writers Circle Q&A: “More than we could bear”

Members of The Gazette Writers Circle met in July to discuss end-of-life issues, an increasingly urgent subject given the fact of our aging population and increasing frequency of chronic diseases.

Today, we are publishing the columns that resulted from that conversation, including this Q&A between Writers Circle member Russ Gerst and his mother, Ann Gerst, of Mediapolis.

Ann was a caregiver for both of her parents, Paul and Elvira Behne, of Burlington, from the 1960s to the 1990s. Elvira was diagnosed with rheumatoid arthritis in 1958 and Paul was diagnosed with Parkinson's disease in 1974. Even though the Behne family purchased health insurance through Paul's employer and saved for retirement as best they could, Paul and Elvira's medical conditions taxed the family's financial and emotional resources.

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Russ: Tell me about your family.

Ann: We were a Catholic family of nine growing up in the 40s and 50s. I was second in the lineup of seven children and the oldest daughter. When my youngest brother (12 years my junior) was born, our family was complete. I got married when I was 21 and our farm was nearly 14 miles away.

Russ: Can you give some history of your parents' illnesses?

Ann: At 38, a year after my youngest brother was born, my mother developed severe rheumatoid arthritis (RA). Life for our family changed as she needed so much help. Thirteen at the time, I baby-sat the rest of the kids while mom and dad made their many trips to Iowa City for treatment. Dad helped mom with everything. At that time, the only treatment for RA was prednisone which caused tremendous damage to her body.

Nearly two decades later, my dad was diagnosed with Parkinson's disease (PD) at age 58. Due to complications related to PD, dad was forced to retire much earlier than he had planned, and then life really changed.

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Russ: How did it change?

Ann: As the years went on both parents required more and more help. Mom got rheumatoid lung, RA's name for Chronic Obstructive Pulmonary Disease. I needed to help more and more, while still raising our three kids and supporting our family farm. My siblings helped as much as they could.

I had always hoped to have a really good full time job, but I took part time work as I just could not raise a family and help out my parents while working full time. Several years after dad's diagnosis, it became apparent that he could no longer get along at home. We already had an aide come in every day to help them with baths and lunch, but when it started taking two aides to move him, we had to see about care center care.

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Russ: What other things were going on and how did you manage?

My kids were now in high school and early college. I was helping mom and dad manage their finances as the daily care was very expensive and they were not wealthy people. During this time, mom's lungs were deteriorating and she required oxygen all the time. Her RA was so severe that she also used a walker and wheelchair. When dad had to go to the care center, it was hard on all of us, especially mom. We had to juggle work, family and help my mom at home and dad at the care center while working in yet another town. We set up a schedule where each of the seven siblings would take mom out one night per week to see dad. This involved getting her into the wheelchair and taking her oxygen, too. We did this for five years! My evening was Sunday. We were able to share the responsibilities and were glad to do it, but most families do not have that much help or live nearby.

I also had to juggle their money to make sure mom had enough to live on at home as the care center costs ate up their savings. At that time, you had to pay cash for the care center for two years, but could transfer assets out of their name before that to protect the money for her care. By this point, she needed home care, too. We all had our families to raise so just could not be there all day during the day.

I made many trips to the bank and social services to learn what had to be done to protect the money for mom. After two years, dad was able to go on Title 19 and his monthly Social Security check went to the care center except for $35 which went into an account for his personal expenses. Mom was able to keep the house and one car.

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Russ: What happened as their health continued to decline?

Ann: Our family had to make big decisions in their final weeks of life. Dad was no longer able to swallow. His doctor advised our family not to put in a feeding tube. Dad's quality of life was so poor that, as hard as it was on our entire family, we made the decision not to do so. The doctor said he would be given medications to keep him comfortable when we or the nurses thought he was in distress. We only had them give him one dose during the five weeks it took him to die. Mostly he slept. We took turns staying with him until he passed away with mom and all of us with him.

As hard as that was, we have no regrets about making this decision. He was not going to get better and not being able to swallow is usually the final stage of Parkinson's disease. We could not see a reason for his continued suffering. Death is kinder than that. Dad died at the care center when he was 76 years old, after many, many years of home care and five years in the care center.

At the same time, mom's health continued to worsen, but she desperately wanted to live at home. So rather than move her to the care center, we just increased her home care. Sixteen months after dad's passing, mom's COPD was so severe she was hospitalized. Shortly after, she moved to the care center as there was no more that could be done for her. Every breath was agony and she suffered so that her nurses finally concluded that some form of intervention was necessary. With the family's blessing, they called the doctor and he asked our entire family to meet him at the care center. He said to imagine someone putting a pillow over your face and not being able to get it off. He said that is how she felt, as she just could not breathe. He told us it was time to give her high doses of morphine which might hasten her death, but would ease her suffering. We all agreed to this as the pain of watching her suffer was almost more than we could bear. After three days, she slipped into a coma, but miraculously, she could breathe peacefully. She passed away early the next morning with all of us with her. She was 73.

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Russ: Other thoughts about your ordeal?

Ann: How could we not feel blessed to be with our parents when they died? The suffering we witnessed should not have to been seen by any children, but it is part of life. What is not part of life is the financial toll it takes on families and worse the emotional toll if your loved one is denied the great medical care our parents received. Everyone should be entitled to this care. Thank goodness hospice is now available to care for families going through what we experienced.

On the financial side, the laws have changed that make it more difficult for the elderly to protect their life savings for the spouse whose health does not yet warrant nursing care. But what of the future for the relatively healthy spouse? Social Security and Medicare are not sufficient to live on.

I dread the future so try not to think about it. But when you have lived it, there is no way not to. It is always in the back of your mind. After watching what my parents experienced, I think everyone should consider how they want their medical and financial affairs handled. They should consider a living will to ensure their medical care is handled as they wish, a power of attorney agreement should be created to ensure the responsible party for their affairs carries out their wishes, and a financial will is necessary to ensure that all financial decisions have been made regarding remaining assets.

' Russ Gerst is an accountant, father of four, 1988 graduate of Coe College, and farms in southeastern Iowa. Comments: editorial@thegazette.com