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Jana's Story

Caregiver, Mother, Educator

I strive to meet the needs of my loved ones as well as my own and, to the best of my ability, maintain a balance for all of us.

I have spent my life in education working with many levels of students and teachers. I chose this path because I liked guiding others, and I wanted to help my charges attain their goals. Within this profession, I have always been a caregiver in addition to being an educator, and I have found both fulfilling. Later in life, when I became a mother and grandmother, caregiving took on a different but very special meaning. I am now retired, but looking back, being a caretaker has always been an important part of the fabric of my life, and I’ve enjoyed that role.

​Several years ago when my husband was diagnosed with Parkinson’s disease, I was not prepared for yet another role of caregiver. The period before he was diagnosed and the initial stages after the diagnosis were very difficult: medication needed to be adjusted and managed, interests and daily routines were altered, and physical changes occurred; in short, our lifestyle that we knew had faded and took on subtle but significant transformations. Our partnership had suddenly shifted from what we had experienced for almost twenty years to a new focus with dramatically different needs.

Then about a year later, our daughter from my first marriage became ill: she lost weight, her energy was low, she was losing hair, and she displayed many other symptoms, which were new to her. After many tests and professional consultations, she too was diagnosed with Parkinson’s disease. This news seemed almost impossible to believe or bear: two of the most important persons in my life were afflicted with an incurable disease.

​At about the same time that my husband was diagnosed, I had decided to retire. The shape of retirement is much different from what either my husband or I had imagined. The balance of our personal relationship is loving and strong but altered by Parkinson’s. As for my daughter, she continues to be very independent, but, as her mom, I want to be even more vigilant, supportive and helpful to her and her family.

​Both my husband and daughter have access to excellent health care providers, but caregiving and managing all manner of health and personal issues are part of daily life for the caregiver. At times, vulnerability and doubt in oneself creep in, and we must balance our own needs with those of our loved ones. Although the role is not one I would have chosen, I realize that these circumstances are what they are, and they have made me much stronger and more self-sufficient than I could have imagined. Eleanor Roosevelt once said, “A woman is like a tea bag – you never know how strong she is until she gets in hot water.” Roosevelt was describing women, but this I believe to be true of all caregivers, men as well as women.

​Looking into the future, we know that Parkinson’s disease is progressive, but we can’t predict the course of that progression nor can we stop it. My husband and I want to make this journey in the years we have together as fulfilling as possible. However, considering Roosevelt’s words again, I am keenly aware as the caregiver that if the water gets too hot or boils out, the tea bag will have no purpose. Thus, as this journey continues, I strive to meet the needs of my loved ones as well as my own and, to the best of my ability, maintain a balance for all of us.

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