July 24, 2016
I attended a meeting supporting those offering care to loved ones that are sick or dying, which they call the Elders Caregivers Group. In Christian circles we call this Pastoral Care and yet for the life of me I can’t quite grasp the meaning of those words that have lost all bearing like what happened when I was a kid and repeated a word over and over again until it was unrecognizable. Harper Collins Online Dictionary (www.collinsdictionary.com) gives two definitions, 1) help with personal needs and problems given by a teacher, and 2) help with personal problems given by a priest. Got questions (www.gotquestions.org) says, “In its most general sense, pastoral care refers to the ministries/services usually performed by a pastor. Some denominations of the Christian faith use the phrase to refer to more specific aspects of a pastor’s ministry, such as counseling and visitation.” A caring shepherd is another, more literal translation, although I don’t find any of this that useful because those of us who care for the sick and elderly are not generally pastors but are the common folk—children of elders, home health care workers, nursing home aides, and assisted living employees.
The kids and I took a road trip to Ohio, Michigan, and Ontario in June to visit family. Before every visit to my family I ask myself to pay attention to how I have grown since the last time I’ve seen them (assuming I have grown) and also what is different about my family and how they have grown. This time, the one thing that was acutely apparent to me is that roles with my mom are beginning to reverse themselves. This awareness has been growing over the last few years as she has started to deal with more health issues, the most recent being a debilitating arthritis of the spine. While visiting doctor after doctor to confirm a diagnosis, she spent months in bed, the only place she could manage the excruciating pain until one doctor finally realized the problem and medicated her for arthritis. Despite the relief from the medication, she cannot turn her head to look over her left shoulder, which makes the prospect of safe driving grim.
This was my revelation, my recognition of growth: from now on when I return to Michigan I will be caring for my mom. I’ll be driving her to her homeland, Canada, to visit family and I don’t know what else. Jill, my sister, lives close to my mom so she does a lot for her, but I was whacked over the head by the fact that I need to step up my role, whatever that means.
While in Michigan I made a plan to drive my mom to Amherstburg, Ontario to visit her sister Virginia, who is my aunt and godmother, and whom I call Auntie Gin. Auntie Gin has been in an assisted living facility for nearly eight years I’m guessing and had recently fallen in the bathroom during the night bruising every inch of her face and one arm but miraculously avoiding any broken bones. Auntie Gin was married to Uncle Bill, who died in 1993, but they did not have any children so the extended family were always their children. My cousins, who live near Auntie Gin and are her legal guardians and oversee her care, agreed to move her to a more secure room on the upper level of the assisted living facility where she would get 24-hour care but where the floor was locked and she will be essentially be confined to a one-room apartment.
Sara, the facilitator, three members, and me, attended the Elders Caregivers Group at St. Gregory’s. I’ll call the members Joyce, David, and Michael, not their real names. Joyce is caring for her husband who has early on-set Alzheimer’s, and David and Michael are both caring for elderly parents who live 1000s of miles away. I sat and wept through the whole meeting as they all described the issues and concerns and emotional and practical things they were going through, and how they were caring for their family members and trying to care for themselves. My tears were partially in empathy for them and partially for me as I realized I’ve been so busy thinking about the practical aspects of my mom’s care that I have not processed any emotions.
Joyce has remarkably embraced her husband’s illness and seems content to grapple with what comes her way and to learn from every moment and every experience. I marveled at her resilience, her adaptability, her honesty, and her ability to support others. When Sara invited me in to the Elders Caregiving Group it was on the condition that I have cared for a sick loved one. What immediately popped into my head and came out of my mouth is that I’ve spent a lot of time with elderly members of my church waiting with them while they are dying, sitting with them when they were recovering, and supporting their family members while they coped with change and death. What I realized as I sat in that gathering is that I’ve been ignoring the next frontier, which is my mother, I do not want to face the emotion associated with her eventual decline.
David and Michael talked about living so far away from their families and how difficult is it to manage care from that distance and the massive amount of time they’ve spent traveling back and forth between their home in San Francisco and their families elsewhere. They both talked about the difficulty of dealing with siblings and their sibling’s ability or non-ability to help with care and practical things like filling out paperwork and making phone calls. I cried because I felt empathy for David and Michael’s situations but I also cried because I am so far away and that makes it hard for me to help. I originally chose to be far away because I needed distance to help me heal from a traumatic childhood and to learn detachment and to learn healthy independence. I’ve paid a price for these privileges—being ostracized by family members, anger and resentment towards me, guilt trips for not being available for family events like weddings, birthdays, and baptisms. Despite healing and better relationships with my siblings, I still have that internal critic that guilts me into feeling like a bad daughter for not being in Michigan to care for my mom. Clearly, I have some issues to deal with concerning my role in my mom’s care.
Joyce described her careful process of including her son in the information about his father’s illness and care. She used the word transparency and talked about the need to discern information she could share and at what rate. I cried because transparency is not a word that I grew up with and not a practice that I was familiar with until I had children myself. My family lived in denial of my father’s mental illness and the resulting abuse he inflicted on his family such that most of us lived under a very thick cloud. Ours was not a transparent family; if anything we were shrouded in secrecy and ignorance and even when we knew what was going on we shrouded ourselves in thick cloaks of silence to protect ourselves. This is no different when it comes to the care of the elderly in our family and in some ways I suppose it is not just a result of mental illness but of a broader way of being in my extended family as well. It is present in Auntie Gin’s care. My cousins, her guardians, have not always disclosed how she would be cared for. When she fell several years ago and needed recovery, they put her in a transitional care facility telling her it was temporary and all along having made the decision to keep her there. I live 1000 miles away so I am not involved in her care and trying to practice detachment I have not expressed an opinion unless asked, but I don’t agree with this. When I found out, I told my children to always be honest with me even if dementia prevented me from understanding. I am learning that all I can do right now is be clear about what I want; I need to create an Advanced Directive. We all need one.
