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 Caregiver of the Month Spotlight
July 2001
Susan Roell

Life Lessons - An "Emergency" Caregiver's Story

Ironically it was on my birthday, February 19th, 2001, that an asteroid hit my seventy-nine year old mother's world. Until this date she was working 4 jobs, (one full time and 3 part-time). She was a vital, exuberant, determined, and driven little lady who looked not a day over 60 and acted no more than 55. She could physically out work three healthy young men at one time any day of the week. This was until she was taken by ambulance to the hospital in February, due to "dizziness". Unfortunately, it was much more than mere "dizziness".

Later that evening she had a grand mal seizure on the CT Scan table, which lead to a biopsy the following Wednesday. The result of this biopsy was a terminal, malignant anaplastic astrocytoma grade three-brain tumor in the right temporal lobe. The news shattered mom's life, as she had known it. The single most useful advice that our neurosurgeon gave us was about "grief". While talking to my brother and myself in the tiny cubicle following the biopsy, Dr. Cole said, "You, your family and your mother will experience the stages of grief similar to those we all experience when a loved one dies. For all practical purposes, her life as she has known it is over." When I first heard these words they stung the deepest part of my being, but later I would come to find much gratitude for Dr. Cole having had the courage to relay his opinions to my brother and to me.

From the hospital Mom moved into my home with my two teenage sons, (15 and 18), and my very supportive, wonderful husband Kenny. It was not discussed, mulled over, or were there any other options ever considered. Mom quickly grew very comfortable to spend her days sleeping on the couch. Daily hygiene became a constant battle. She stopped taking phone calls from friends and became extremely nervous when she had to leave the house. She was severely depressed, and put on a daily antidepressant, but she refused the suggestion by her doctor of seeking psychiatric help. Two weeks to the day after Mother had entered the hospital, my husband's mother had a massive cerebral hemorrhage. She developed a staff infection and died a week later on my oldest son's 18th birthday.

When medical emergencies happen it is as though we are gifted with the ability to go on "auto-pilot". It is a wonderful gift in an immediate crisis when life saving decisions must made be instantaneously. However, for long term coping, it can be very hazardous to the health and well being of the patient, their loved ones and for the one immediately assuming the ongoing primary caregiver role. I was soon to discover this hazard first hand.

I was totally ill prepared for the role that I had so willingly accepted. Going into this role ignorant of its ever-changing requirements, I soon felt a backlash of unexpected emotions. Our extended family had never been a "Norman Rockwell" version of tranquility. As a whole, we were not a family who showed compassion and offered each other assistance in any semblance of a supportive, healthy way. From my teenage years until age forty, I had been "disowned" so many times in writing by one or both of my parents that I often wondered if I ever really "belonged". Every major life event, which should have been a "joyous, happy" time, was marred with determined obstinacies from my mother, father, and my younger brother. At 25, I was "disowned" because they opposed my marriage to my now husband of 19 years. When we bought our business, Mother so blatantly opposed us not offering a 50% share to my brother that there was a year of tears, arguing and bitterness. Twelve years ago, for every day of a two-year period, my mom accused my future sister-in-law of having an affair with my husband in order to prevent my brother's upcoming marriage. Then in 1998, when I finally gained enough courage to "cut the proverbial umbilical cord", sell my home next door to Mom, and attempt to build a healthy life for my husband, children and myself several miles away from the chaos and confusion, Mother threatened again to disown me and to take me to court to have me proven "insane". She did not speak to my family or to me for two years.

A "Norman Rockwell Family", we are not. Still, I love my mother and I had no intentions of allowing her greatest fear to come to pass. She had always lived her life in avoidance of "assisted care living", and I had told her she always had a place in my home. Insane, on my part?. Maybe, but I was willing to try.

The usual "dysfunction" that has always been present in my mother's, brother's and my relationship did not miraculously disappear, but now, with a more solid foundation of strength from which to approach it, the relationship is not as unhealthy for my husband, my children, and for myself as it once was. I must be very cautious not to be "sucked back into" the fear, worry, manipulation, control and dysfunction that is "their" daily life. There has never been any respect for privacy or sleep in my extended families relationship, and I have to strongly maintain my immediate families rules about such. Mother tends to want to "shadow" me at home, even following me to the bathroom and wanting me to constantly be wherever she is. Twenty-four hours a day, seven days a week this is not healthy, and it becomes "smothering". My brother, a recovering alcoholic, has attempted to bring his own set of issues to my table for me to help him "fix". I have had to "back away" from his "problems" and attempt to "balance" only as much on my own plate as I can handle.

From a very early stage in my caregiver role, I realized that I could not stay at home day in and day out without a break. I hired two cousins to help give me space and time to get away from home and conduct our business's office work, buy groceries or just "escape" for a few hours. It is expensive, but well worth the price for my sanity. My best friend's favorite line when she hears the comments my mother and brother often make is so soulful and wonderful that it humorously reminds me to keep laughter close by my side. She says, "Pack your bags! We?re going on a guilt trip!" When "outsiders" can be so obviously aware of and confidently voice their opinions about the dysfunction they witness it helps me to quickly regroup and once again work to maintain the "balance".

"Had I known then what I know now", I would discuss and solve financial issues before committing to the primary caregiver role. I would insist on having sole power of attorney. When you are forced to track down a sibling for a debate and a signature and he or she is doing little or nothing to physically, financially or emotionally contribute in the care giving role it is not a functional situation. Luckily, very early into my new role, a friend suggested Christian support with a local counselor as well as looking into online support groups, which led me here to Empowering Caregivers. This support is beyond a shadow of doubt the most productive assistance that I have found. It put me in touch with the most compassionate, caring souls and it provided me with the largest source of invaluable and helpful information. Faith, friends, and family help to keep me level. The "L" words: "Look, Listen, Learn, Laugh, Live, and Love" help me to find strength when there seems to be none to find. These words help me stay me on a path of growth and balance. Each day my life is gifted with "many, many blessings and tons of tiny miracles" and I am so very thankful to be open to realizing and to accepting each and every one of them. Together these supports help remind me to stay focused on the truly important things in life so that I do not allow the pain of my past to infect the pleasure of my present.

At my last visit, my counselor asked if I expected a "reward" for my care giving. At first I was surprised, because I had not entertained the idea of what I would "gain" from my role. Now, I know my answer to his question. It is "yes!" I do expect a reward. I expect to be rewarded by witnessing the remainder of my mom's life in an environment that is the very best, which my family and I can provide for her. Our goal is to provide a home, which surrounds Mom with a sense of healthy security and with a family that offers steadfast, unconditional love. If we are able to even add a degree of dignity, grace and respect " to her life, "then we have succeeded. We can then go on, content in knowing in our heart of hearts, that we have done the best that we could possibly do. As far as rewards go, this would be the most wonderful reward that I can imagine.

Susan Roell 2001
daughter and caregiver to "Miss Ruby" (79 yrs old)
diagnosis right temporal lobe brain tumor 2/2001

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