Empowering Caregivers Spotlight- Katherine Dorn Zotovich

Sometimes, during our busy lives as caregivers we lose our ability to see the good in our situation. Unfortunately, we tend to focus on the negative and the losses we and our loved ones are experiencing. Caregiving can be a demanding, exhausting and emotionally overwhelming experience. However, it can also be full of hidden blessings. It can be one of the richest and most profoundly rewarding experiences you may ever encounter. It is a matter of perspective. Is your caregiving cup half empty or half full? May we be mindful of the precious gift we have been given; the privilege of sharing some of the most challenging yet rewarding moments of life with another human being. I would like to share with you my story and how I came to look at caregiving as an opportunity to find hidden blessings. I challenge you to take another look at your caregiving cup. Is it half empty or half full?

Like so many other baby boomers, I have found myself struggling with the dynamics of being a member of the "sandwich generation." I came to be a caregiver to both of my parents quite unexpectedly eight years ago. My mother was diagnosed with the beginning stages of Alzheimer's Disease in the mid 1980's. My father had health issues resulting from type two diabetes, was still determined to be her primary caregiver. And, he was, for about five years, until his health began to decline.

After three years of pleading, cajoling and urging my father to get live-in care for both my mother and himself, my sister and I finally intervened. At the time, my parents lived some eight hours away by car in a remote mountain resort community. I commuted for monthly visits to check on them; I spoke with them by phone daily.

It was not uncommon to receive a desperate phone call from my father asking me to explain to my mother who he was. Once she heard his voice on the other end of the phone she would recognize it immediately and plead with him to come home. However, once he hung up the phone receiver from another part of the house and walked into the room she was in, she was clueless as to whom he was. He would even take out his driver's license and show her that he was her husband.

If we could not make a weekend visit, my father would drive mother eight hours to visit us on some of the weekends. She would be so excited to see us, but after being with us for two or three hours she would ask to go home. Invariably my father would turn around and drive back the eight hours to take her home - then she would immediately ask to go home, even though she was home. Nothing seemed to work. Yet, he was incredibly proud and determined that he could handle the situation and would not accept any of my help or advice.

We went through this frustrating experience for four long years until the stresses of caregiving undermined my father's health. I was forced to take a more drastic measure. My sister and I drove to their community to interview live-in caregivers. This proved to be unsuccessful. We ended bringing both of our parents back to our community and overseeing their care. Within a few weeks of our parent's arrival, my sister moved out of the state. So there I was alone, frightened, over-whelmed and in-charge. Talk about a wake-up call!

At the time, my children were three, six-and nine years old. I was teaching full time but over night had become the full-time caregiver to both of my parents. I oversaw both my parent's care for four years. During that time, I had both of them in and out of acute care facilities; residential care facilities and my home. During those four years, my father lost both of his legs to diabetes. I worked with him in his painful recovery after his first amputation and watched with admiration his determination to learn to walk again at the age of eighty plus.

I would visit him every day at the care facility on my way home from work. I was his lifeline to the outside world beyond his facility. My mother was moved to the same facility so he could see her on a daily basis. They had been married for fifty-eight years and never been apart. My father passed away from complications of his second leg amputation four years ago.

I have continued to act as my mother's caregiver. My mother has continued to decline and is now in the late stages of Alzheimer's. She hasn't recognized me for the past three years, and although it is very painful I still visit her regularly and oversee her care.

As a caregiver for almost a decade, I find it difficult to choose my greatest caregiving challenge. There have been so many. Not being available to my own children and missing out on their special school and extra curricular events because one of their grandparents required immediate medical attention has been difficult. Emergency calls in the middle of the night to transport them to the hospital, staying up all night and then teaching the next day has been challenging. Watching my mother wither away because of the hideous effects of Alzheimer's has been heartbreaking. Giving permission for my father to have his second leg amputated was heart-wrenching. However, the most difficult of all was and is ensuring that my parents receive treatment with love, dignity and compassion by all who give them care, from the nurse's aide, facility administration, lawyers, doctors and medical staff to the social service personnel.

The journey as a caregiver has been challenging for me but one filled with hidden blessings. The title, "Hidden Blessings" is such an appropriate one because the blessings of caregiving are, for the most part, usually hidden and always unique. For me personally, the blessings of caregiving have been on many levels. First and foremost, it created an opportunity for me to develop an even closer relationship with my parents. It allowed me to give back to them the love they bestowed on me when I was a child. Having come full circle where I assumed the role of their caregiver; we were blessed with closing the circle of life together. I have grown in so many ways both personally and professionally because of my caregiving experience and have met so many incredible people in this journey.

I have become an advocate for seniors and their health care. I have become more assertive. I have assumed more responsibility for my family's health care issues; rather than assuming health care professionals always know the answers. I have advocated for change when I have not been pleased with care providers or facilities. I have gotten more involved in my community speaking at caregiving workshops and Alzheimer's conferences in order to share my knowledge with others. I have hosted Internet chats on Alzheimer's, caregiving and grieving issues. I have written books for caregivers, children and their families; in order to help share the knowledge I have gained as a caregiver. I have developed a web site dedicated to sharing that knowledge with caregivers and their families. Most importantly, our family has become stronger because of the adversities that we have faced and the healing power of love that we have for one another.

My advice to other caregivers is simple; to find any blessings associated with caregiving, hidden or otherwise, go within. Try to find some time for yourself and try to heal. The demands of caregiving are endless. Most of us who find ourselves in the position of giving care to loved ones are sensitive, compassionate people who tend to put the needs of others above our own. It is vital that you enrich your own life so you can enrich the lives of those to whom you give care. I found myself going through a myriad of emotions, just as you may at times: resentful, angry, overwhelmed, scared and just plain dog-tired. If you feel that way, make sure to take some time for yourself to put the balance back in your life. One way to do that is to carve away a few minutes each day just for you.

I know the one valuable commodity that caregivers rarely have is time for themselves. Working full time, having three young children and assuming caregiving responsibilities for two aged loved ones with serious health issues, left me little time for myself. How did I cope? I began to keep a journal. It was the only thing that I could do to get my feelings out and keep my sanity. Keeping a journal provides me with a safe place to explore the many emotions I feel. Because of my journal writing, I can unload the overwhelming emotions and stress I feel that I could not share with other family members. I learned from writing that all these emotional ups and downs were normal and part of the healing process.

The benefits from keeping a journal are endless. Writing on a daily basis is a tremendous commitment, but it can also be a tremendous gift to our self.. Writing can help us view our situation from another perspective. It gives us the opportunity to examine our own issues surrounding death and illness. Writing can be a vehicle to get us in touch with our feelings and address the difficult emotions we may face. It can increase our clarity and awareness of our situation. Rereading our writing at later times can help us to see our growth. For myself, it also served as a working document when I legally challenged the caregiving practices of a long-term care facility.

I could have created many excuses not to do the writing, but something inside me compelled me to commit to the undertaking of keeping a journal. I urge you to begin keeping a journal. It is inexpensive, available when you are, offers solace, and promotes your own health and well-being.

Keeping a journal will surprise you. You will find things about your self and your inner feelings emerge that you didn't know you were feeling. It helps with the isolation and loneliness of caregiving by allowing you a vehicle to be heard. In having a voice, you are creating a place for yourself to heal from the everyday demands of the role of caregiving.