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| Ever Since I Can Recall
By Terry Tomasello
(Editor's Note: We welcome regular contributions from family caregivers and from "Godspeed" caregivers like Terry. Terry remembers her role as caregiver to her mother-in-law.)
If hindsight is truly 20/20, then surely I am a suitable candidate to comment on the topic of care giving. Two decades ago as a caregiver and now as a care manager for a Massachusetts-based social service agency for the elderly, it is this same hindsight I find myself frequently returning to for the best insight in helping caregivers on my caseload.
Although my personal caregiver role has long since ended, I periodically read some of the passages inscribed in a journal I kept during that time and the impressions seem timeless. Looking back on that period as the primary caregiver for my mother-in-law, Marilyn, who had been diagnosed with terminal throat cancer, I recall how my emotions ran the gambit from anger to joy, frustration to pride.
For example, Marilyn and I watched our afternoon soap opera together, which had become our daily ritual. One day, I looked across the room and took note of how the radiation treatments had thinned her hair and changed her facial structure. My entry reads: “I know the cancer is taking its toll on my mother-in-law. Her big brown eyes peek out from under the bandana which covers her nearly bald head. I admire her courage.”
My husband and brother-in-law felt helpless as the disease progressed. Their mother, who had been their “rock” since divorcing their father a few years prior, now needed them and finding their own ways to help her wasn't always easy. Marilyn had always been an outstanding cook and prided herself on many of her special dishes. In an effort to keep a sense of normalcy for my husband and brother-in-law, I pulled out one of her recipes and set to work. The end result was this:
“I tried so hard today to make Marilyn’s meatballs just the way she has always done it. I thought I followed the recipe correctly, but not one of them would hold together in the sauce. Everyone said meat sauce was fine, but I have made meatballs so many times before this. Why can’t I make them now when it counts?”
Of course in hindsight, my journal notes offer a different perspective to me today. Perhaps the meatball incident made my mother-in-law feel irreplaceable and for that thought I am forever grateful!
Even so, nothing matches the November 9th entry to my journal in which I clearly hit one of my lowest or highest points as a caregiver. I wonder if any of you here today might relate to this. “I am hovering in the corner of the black and white checkered bathroom. My hands are wet from the tears which keep streaming down my face. I am so scared and angry because I feel pushed to the limit. I have to get it together before my mother-in-law wonders why I am in the bathroom so long. She has asked me to help her change the bandages around her tracheotomy and I feel so nauseous. This poor woman is asking me to help her. She is so embarrassed, but I am not a nurse. I can’t do it. I am so angry at myself. I have to do it. God help me please. Help me find the courage to do it and not let her know how I feel.”
I am happy to say I got through this experience and today referencing this excerpt actually serves to remind me I can get through other difficult times which I may face in my lifetime.
I read an on-line article published by Family Caregiver Alliance which offered advice to the caregiver. It read: “It is often hard to see beyond the care tasks that await you each morning, but the care you give yourself is the care you give to your loved one.”
I realize today as I connect caregivers on my caseload to various support groups, conferences and local Area Agencies on Aging that society is truly making positive strides in understanding the value of the informal caregiver. The growing attendance at area conferences for caregivers is proof that caregivers recognize the importance of being amongst other caregivers and taking care of themselves.
Twenty years ago, I opened a spiral notebook and recorded any and all of my thoughts. The pages of that notebook witnessed the highs and lows of my caregiving experience without judgment or advice. I only see now what a valuable tool my journal proved to be in keeping my emotions in check throughout my care giving experience.
It brings me great joy to see how far the recognition of caregiving has come over the last 20 years and certainly caregiving conferences today offer caregivers more venues, in addition to journaling, for connecting to good mental and physical health.
Caring for a loved one can be one of the most fulfilling experiences of a lifetime, especially if endured with a sense of taking care of yourself. It can extend someone’s life and certainly it can add to the quality of a life.
I would like to share a final excerpt from my journal with all of you who maybe reading this article today. Perhaps it best sums up the way I felt twenty plus years ago and still feel today about caregiving.
"February 21, 1985
“The church is filled today with family and friends who have come to support us in our loss. I hope it is okay that in my sadness, I also feel a sense of pride and honor. Despite everything, all the things I thought I couldn't do as a caregiver and did and all the things I did so imperfectly, I felt so honored and blessed to share all those moments with Marilyn. I feel almost certain she did too.”
Terry is a married mother of one son. She works as a care manager for social service agency in Massachusetts. Terry believes that her personal caregiving experience was, without question, the best "field experience" she could bring to her job. "It certainly equipped me with the perfect blend of compassion and knowledge for connecting caregivers on my caseload to the resources they need," she adds.
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