It is the time after the Winter Solstice and before the New Year, a time of long, dark nights. I am fortunate to live in an area where I can see the stars. Last week, I arrived home at midnight, opened the car door, and heard the unexpected sounds of Canadian Geese honking overhead. I looked up to see the large V formation of geese, flying through the mackerel clouds and navigating by the stars.

I wish that our society of humans would be as cooperative as those geese, holding a perfect formation and trading positions so that each bird takes its difficult turn as leader, breaking the wind, and then when exhausted, switches to the back of the formation to be carried by the wind draft.

Realistically, when families are involved in caregiving, it is unusual that anything approaching a high level of cooperation is exhibited.

Often, one family member takes on the difficult tasks involved with being the primary caregiver, and even though calls for help go out to others, the primary care giver may find herself feeling exhausted, isolated, and resentful.

Eight years ago, I found myself in that state of mind after caring for my mother in her home for five years. Although I had two siblings living locally, neither chose to be involved in her daily care and neither was willing to share the financial cost that would have been required to keep her in her home. When my siblings voted, against my wishes, to move her to an elder care facility, I felt powerless to prevent what I thought would be a terrible decision.

Following Your Own North Star | The Caregiver Space Blog - Photo by jesse? via Flickr

Photo credit: jesse?

I sought advice from a social worker and entered that first counseling session with a feeling of embarrassment and failure at not being able to solve this issue with my siblings. Melissa informed me that conflicts in families dealing with caregiving issues are common.  This observation and her strong support broke my feeling of isolation. As I talked my way through a tangle of emotions, I had to face the reality that I did not have the capacity to be her sole caregiver and that I lacked the financial resources to hire the staff that would be needed. Again, a feeling of powerlessness emerged in me.

The question that allowed me to move forward was Melissa asking, “Who do YOU want to be in relation to your mother, regardless of where she lives?”  This question brought the clarity that I sought. My answer was clear: “I want to ensure the highest quality of life for my mother, where ever she is living, and to the best of my ability.”

Suddenly, I had my own North Star by which to navigate.

In the next two years of my mother’s life, through her brief stint in an assisted living unit, a year in a skilled nursing unit, and four months in a locked dementia unit, that North Star guided me. I chose to visit my mother every evening to help her prepare for bed. We developed a favorite ritual: After she was all clean and ready for bed, we would stand next to her bed, hug each other, and sway as we sang in harmony the tune “Happy trails to you…’til we meet again…” (from the old Roy Rogers TV show). The sweetness of those moments are still with me, more than five years after her death.

Focusing on who I wanted to be in relation to my mother—on maintaining the quality of my relationship with her and fulfilling my desire to meet her needs—made a huge difference to me, for I was choosing how much to give to her rather than feeling a victim of my siblings’ choices.

Who do YOU want to be in relation to your loved one?

What role as a caregiver will best meet your needs and your desire to be of service? Perhaps the geese in your flock will more willingly share duties than those in mine did, but regardless of how much support you receive, you will be on the right path if you have a North Star to guide you.

Photo credit: Elsie esq.

Joanna Lillian Brown was in her late 30's when she became the hospice care coordinator, and a primary caregiver, for her 97-year old grandmother. When speaking with dozens of family members, work associates, and friends, she was surprised to learn that no one she knew had been with someone at the time of a loved one's death. During the final three months of her grandmother's life, she kept a journal of her thoughts and fears, as well as notes about special moments shared with her grandmother and family members. The experience of being with her grandmother at the time of her death was a deeply spiritual experience that removed her fear of death. Eight years later, she and her spouse bought a home four houses away from her elderly parents to provide them with daily support. She was a primary caregiver for her father during the last two years of his life and was with him as he died. Again, the process of journal writing provided a path for reflection and comfort during the challenges of caring for a loved one. Following her father's death, she provided daily visits to her mother, enabling her to stay in her home for another five years, until she had a stroke. For the last eighteen months of her mother's life, she provided direct care to her mother in a nursing home every evening, where she learned about the problems inherent in even excellent nursing care facilities. She was with her mother when she died at 4:00 am on May 7, 2008. Following her mother's death, Joanna reviewed her journals from prior years and began to wonder if her reflections could benefit someone who had not yet been a caregiver. A supportive writing coach encouraged her to continue writing, and the book Caring for Dying Loved Ones: A Helpful Guide for Families and Friends was written within a period of 20 months, based on journal entries, stories contributed by personal friends, and additional research. Joanna Lillian Brown also provided hospice care to her earliest childhood friend, who died at the age of 54 from pancreatic cancer. She has been a caregiver or hospice caregiver to several members of the Unitarian Universalist Society of Northampton and Florence, Massachusetts, where she and her spouse, Jo Lower, have been members for 20 years. She has written and given eulogies for her mother, her father, and three close friends, as well as designing and participating in memorial services. Throughout her years of caregiving, Joanna Lillian Brown has worked full time in the fields of alumni relations and development.

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2 Comments

  1. Love the geese formation analogy. I lived the nightmare too. Dad has been dead a year. My brother and I only communicate through our lawyers. When I told him I just couldn’t care for dad myself anymore he was furious and said dad did not have the money for a facility let alone help in the home (real help…dad had BvFTD). He ended up in several facilities. He never went broke or even close. I not only am resentful for the lack of help with dad, but all the lies too.

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  2. Thank you for this article. I have been fighting within myself about moving my husband from home care to assisted living. His stroke left him with memory issues and, unfortunately, his personal safety is at risk. This is agonizing for me as his wife and sole caregiver. I have more research to attend to before this decision is made.

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