Our author spotlight for March is Bobbi Junior, winner of the 2014 Free Publishing Contest in Non-Fiction for The Reluctant Caregiver.
Bobbi’s experience with caregiving has spanned several seasons. Early on, she worked with children who had been abused and neglected. Later, her daughter suffered a catastrophic injury and was left a quadriplegic. Bobbi and her husband worked as a team to care for their daughter, at the same time nurturing and supporting a son growing up with Tourette Syndrome.
Writing and story have long been Bobbi’s bridge for processing and sharing her questions, experiences, and learning. When her idea to write The Reluctant Caregiver took shape, Bobbi took part in writers’ conferences and joined several writing groups, one of which culminated in the publishing of the anthology Telling Truths: Storying Motherhood (Demeter Press). Other publications include pieces in industry newsletters, Alberta Views, and FellowScript Magazine. As Communications Coordinator for an Edmonton Alberta Human Services group, Bobbi continues to learn, encourage, and share information to support others on their journeys of healing and growth.
In addition to her careers, Bobbi serves as treasurer for InScribe Christian Writers’ Fellowship, and as chair of her church’s Board of Directors.
Seeking caregiver feedback on her blog has become a new venture, as Bobbi gathers and shares real-life caregiver experiences at these various forums. You can visit her website at bobbijunior.com and e-mail her through the site. Bobbi welcomes your e-mails and stories as you move forward on your own journey.
Publication of The Reluctant Caregiver has opened a floodgate of unexpected opportunities. Bobbi has had several speaking engagements through the Alberta Caregivers Association, including a grant presentation to the ACGA from the Honourable Dr. Kelly Leitch, Canada’s Minister of Labour and Minister of Status of Women. Presenting at the Covenant Health Seniors’ Forum led to requests to speak to doctors and medical students, describing the caregiver’s perspective. As well, Bobbi was invited to sit on the Alberta Dementia Strategy Advisory Committee, and has recently been granted a weekly segment on HopeStreamRadio.com discussing caregiving issues. Bobbi meets these opportunities with considerable prayer, seeking the Lord’s guidance as a voice for caregivers.
Her books are available in Edmonton at The Fig Tree, Chapters Indigo, Amazon, ChristianBook.com, the Word Alive Press Bookstore and the Alberta Caregivers Association’s newly launched Caregiver Connection Centre.
WAP: Your title, The Reluctant Caregiver, begs the question. What made you reluctant?
BOBBI JUNIOR: First, I’m not a natural caregiver. I asked God one day, “If I have to be a caregiver, why can’t I be gifted in this role?” The answer that came to me was clear: “You don’t grow when you’re gifted.” I was as reluctant to accept that insight as I was to be a caregiver.
Mom and I never got along. In my younger years, she disowned me. As an adult we were civil, but we mutually agreed to keep our distance. It still strikes me as ironic that a time came when Mom had to accept that I was the only person in a position to help her. My brother lives five hours away, and there was no one else in her life. If Mom wanted to keep living independently in her home, she had to call on me for support.
WAP: Your mother suffered from dementia. Were you able to get help from the medical community or seniors programs?
BOBBI JUNIOR: Mom had developed a firm distrust of the medical community. She hadn’t seen a doctor in over a decade. She was a very smart woman, and had researched ways in which seniors were vulnerable and how to protect herself. When dementia took hold, her paranoia was well-established. We tried to arrange home care, but her brain couldn’t accept the change, and she wouldn’t let the person in. We tried an emergency response button, but the wires to her phone frightened her, so we had to remove it. She never set up a Power of Attorney, so my brother and I had no legal authority to insist she accept help. I had to decide if I was going to force her through a competency hearing and risk destroying the fragile relationship we had, or trust God to keep her safe until something changed her situation. I chose the latter.
WAP: You’re very honest in describing how ill-prepared you felt in dealing with your mother’s situation. What gave you the courage to be that vulnerable with your readers?
BOBBI JUNIOR: In 1999, our daughter was severely disabled as the result of an accident. One day I made an angry demand of the Lord: “If we have to go through this hell, you’d better find a way for it to serve some purpose!”
When I began writing my mother’s story over a decade later, that prayer came back to me, along with Phillipians 2:7: “Jesus made himself to be of no reputation” (NKJV). I felt he was saying he would answer my prayer, but it was conditional. If I would tell the story honestly, and set aside any desire to protect my reputation, he would honour my prayer and bring purpose out of the struggle. Trying to be open and honest has become a way of life now. I don’t always manage, but when I do there’s a sense of freedom that doesn’t exist with my old self-protective attitude.
WAP: People often pray for strength, but in your book you share what seem more like conversations with Jesus. Did you feel these conversations were different from prayer?
BOBBI JUNIOR: They are different. When I pray, I put things before the Lord and leave them with him. Dealing with Mom’s situation required hands-on help. I regularly ranted and whined to Jesus. When I wrote down my frustrations and fears, the Lord impressed on me how to change my perception, what I could let go of, and often my own underlying goal that was causing me more stress than necessary.
WAP: Your story is as much about your own personal growth as it is about dementia. Having had a tumultuous relationship with your mother in the past, what was the biggest lesson you learned during this difficult time?
BOBBI JUNIOR: I learned that I didn’t need a mother any longer. I was a grown-up. I had a Father in heaven. I could let go of that unfulfilled desire to have a mom who loved me and simply accept her as someone Jesus loved. That discovery was both healing and freeing.
WAP: Did you see any change in your relationship with your mother as a result of her dependence on you?
BOBBI JUNIOR: When I spoke with her on the phone, she seemed to hear the teen she had so much conflict with, and our conversations were often heated. In person, though, she saw an adult who was willing to help, and I began to see her through Jesus’ eyes. Mom once told me, “You’ve gained a sense of humour in your old age.” I often told her I admired how hard she worked to find strategies to work around the confusion dementia caused, and it was a joy to realize this was true.
WAP: What advice would you give for others who are in the reluctant caregiver position with someone suffering from dementia?
BOBBI JUNIOR: Being a caregiver requires giving of ourselves. I’ve learned a hard truth. Sacrificial, intensive care is manageable in the short-term. However, long-term care must come out of our abundance. Stress occurs when demand exceeds resources. When we lose our reserves, we lose ourselves.
Often we feel duty-bound to meet all the requests and desires of our recipient, arguing that we have choices because our brains are still sound. Hers wasn’t, so I had to fulfil her choices for her. Over time the balance can tip, and the caregiver’s choice is lost in the increasing needs of the recipient.
On a day-to-day basis, don’t argue with someone who has dementia. Don’t explain. Don’t defend yourself. Don’t try to change their mind on any given topic. Accept them where they’re at, even if they’re miserable or angry, and pray a lot! State what you’re able to do and not do in supporting them.
Caregivers cannot find solutions to the confusion and distress of their recipient. Their capacity will continue to deteriorate. In the midst of it, the caregiver must learn to say no at times, and accept what feels like failure. It’s a long, difficult journey. With the Lord’s help, it can be survived.
Bobbi Junior writes and speaks about caregiving through two life-altering experiences: a devastating accident which left her teenage daughter paralyzed, and the chaos, victory, and humour with which she helped her mother withstand the encroaching grip of dementia. Bobbi lives and works in Edmonton, Alberta. Visit her blog at bobbijunior.com.