Jeannie Fleming-Gifford, local author and executive director of the nonprofit Fairmount Center for the Arts, shares her journey as her mother’s daughter and caregiver in the book “The Gift I Never Wanted: The Journey of Caregiving and Lessons Learned.” Her mother was diagnosed with a stroke in 2015, which led to her needing care in a long-term health facility.
Fleming-Gifford provides some insights into her book, but also how she has dealt with decisions as her mother’s caregiver.
Q: Tell us about the book “The Gift I Never Wanted.”
A. Fleming-Gifford: “‘The Gift I Never Wanted’” is the bittersweet story of the journey I have had with my Mom post-stroke. It shares the personal journey from the challenging relationship I had with my Mom throughout most of my life and the renewed, but different, relationship I have shared with her for the last five years as I have served as caregiver and advocate for her changed health needs. Additionally, the memoir tells of challenges and what I believe are opportunities in long-term care to improve and support quality of life. These lessons learned are interspersed throughout the book as a way to connect and support other caregivers.”
Q: After your mother’s stroke diagnosis, tell us about the process of finding long-term care.
A. Fleming-Gifford: “Though I was hopeful that rehab would ‘fix’ her, after a couple of months, it was clear that she would not be able to return to living independently. New to navigating this situation, I was lucky to find support and direction from social service providers both in the hospital as well as the rehabilitation center. The first step in finding long-term care was identifying facilities which were appropriate to my Mom’s needs and also had availability. I then visited several facilities, taking a tour and trying to comprehend how this would be my Mom’s new home. I also wanted to understand how I would be part of the care team and partner with the professionals. After making this tough decision, I navigated the paperwork and then was an active part of ‘move-in day,’ working to create elements in my Mom’s shared room space which would make it feel like home to her. My daughter was 8 years old, and I felt like I had become a parent again, but this time to my Mom. Unfortunately, this new caregiver role did not bring the joy of being a parent to my child. In this new role, I found myself trying to do the right thing, to be a good human, but often feeling alone and overwhelmed with the new role and responsibility.
Q: What do you think is the most challenging aspect of being a caregiver?
A. Fleming-Gifford: “I compare being a caregiver to running a marathon (though I actually have never completed a marathon, only a half-marathon). The journey can feel long and though you don’t want the ‘race’ to end, many days you feel exhausted. There is also a challenge in trying to balance other parts of life. For me, this includes my immediate family, which consists of my husband and my daughter, as well as a professional career which I have worked hard to create and value. Though I still haven’t mastered the art of balancing my caregiving role with being a parent, professional, not to mention a wife and simply me, I have found that my commitment to daily one-hour walks, yoga and meditation and a commitment to eating fairly healthy (I am a vegetarian) have kept me ‘mostly’ sane. The other challenging aspect is to respect the caregiving team in the facility (and empathize with how difficult their work is) while also being an effective advocate for care. Unfortunately, there have been situations where I came in to visit only to find my Mom in a circumstance that I believe is not appropriate or supportive of quality care. It is those times that have challenged me in being kind and grateful for the medical team helping to care for my Mom, but also being an effective advocate for my Mom.
Q: How did COVID-19 change your view of taking care of your Mom who was in a nursing home?
A. Fleming-Gifford: “The call came on March 11, 2020. I was told that I would no longer be allowed to visit until further notice. Feeling helpless and hopeless, I worked to find creative ways to continue to connect with my Mom. My connection continued — albeit differently — thanks to the caregiving team at the long-term care facility. Working with the staff at the facility, I kept in touch with my Mom with weekly Facetime, intermittent window visits and occasional phone calls. My admiration and respect grew for the team as they continued to show up and work in the most challenging of times. Though there were some rough spots (i.e. I tried to obtain a job in the facility, but the offer was rescinded once it was known my Mom was a resident), I have only gratitude and respect for the team and organization. They have continued to provide quality care and worked to keep residents like my mom connected to their families.
Q: Can you share with us a few tips when going through the process of taking care of a loved one in a nursing home?
A. Fleming-Gifford: “Yes! Actually, at the end of each chapter of the book, I share take-a-ways and lessons learned. Here are a few of my favorites:
Patience is important, but being an advocate for someone is more important. When there are no answers, keep asking questions. Even if you are only told, ‘We don’t know’ or, worse yet, you aren’t told anything, keep asking questions.
- You are not alone in this journey. Whether they are family or friends or professionals in the field, use your resources.
- Try all methods of communication, both with your loved one as well as those helping to provide care. Think about calendars, a dry erase board or even a notebook.
- Hang on to hope.
- With both hands.
- And share cookies often (individually-wrapped during the pandemic).
Q: How do you hope your book will help others?
A. Fleming-Gifford: “I hope that this book will help others by letting them know they are not alone. Caregiving is a hard, sometimes sad journey. My book shares the story of an imperfect, broken relationship I had with my mom and how a terrible event — a stroke — provided a new chapter in our story as mother and daughter. Though the last six years have been challenging, it has also had its rewards. This book is about relationships, second chances and life.
Q: How can someone get the book, or will you be doing any speaking engagements soon?
A. Fleming-Gifford: “The best way to order the book is through atgoriginals.net. I am in the process of confirming speaking engagements in the area with the first one coming up on Monday, November 1, 7-8 p.m., at the Madison Public Library. I am grateful for all opportunities to speak and support other caregivers. To schedule a speaking engagement, I invite individuals to connect with me at [email protected]”