Caregiver Story March

Finding the Blessings in Caregiving
by Kathy A. Miller, March 2018

Caregiving…. It requires courage, strength, resiliency, humor, and patience. Caregiving also gives back… it gives us a sense of purpose, richness, and blessings. 

I have been blessed to be part of a large caregiving family. That is, for the past 16 years, I have facilitated family caregiver support groups and have met hundreds of caregivers. When you’ve been facilitating support groups that long, you tend to learn a lot—just through the power of listening. I am grateful that I have had this opportunity to learn so much from so many, because I drew strength on that wisdom when I became a caregiver.

I knew at some point, I might become a caregiver for my mother; but I expected that to be a decade or more away. My mother, at age 83 and just 5 feet tall, had more energy than me and she was always on the go. But then life changed in an instant. I went from being a daughter spending a fun day with my mother, to being a caregiver… and eventually, having to make end of life decisions.

Five years ago, this month, my mother slipped and fell. She didn’t hit her head or lose consciousness, but she did break her shoulder and hip.  After learning of her injuries, my mother slipped into a coma. The small rural hospital transported her to the University of Iowa Hospital in Iowa City where we were met by a trauma and neurological team. 

Minutes turned to hours, which turned to days, and then to weeks. The caregiving journey can be a marathon—lasting years, or it can be a sprint, like mine was. While the doctors could never make a definitive diagnosis on why my mother was having continuous seizures that put her in the coma, I knew why. My mother lived life vibrantly, and she knew what a broken hip meant to someone her age. I believe it was her way to let go. 

For 19 days, I stayed by my mother’s side. I asked to sit in on meetings with the medical staff. I met with spiritual counselors. I asked questions. I listened. I learned as much as I could.

During this time, I also kept a daily journal. Not only did I write down all the medical information I was trying to absorb and process, but I also wrote about all the emotions I was going through. 

Once the caregiving journey is over, we tend to forget some of the small nuances of the experience—both positive and negative. Each year, for 19 days in March, I reread my journal from 2013. It was very therapeutic for me at the time to journal this journey, and it is still very therapeutic for me to revisit that time through my words. 

When I read my journal, my emotions can become very raw. However, when I reread what I wrote, it also reminds me how strong of an advocate I had become. I was so thankful for the wisdom that came to me through all my interactions with other caregivers. I was a caregiver. I was an advocate for my mother. I was an advocate for myself. I knew how important it was to take care of myself during this time. It’s wasn’t easy, but it was necessary. I talked with friends daily. I allowed others to help me. I walked a lot around the hospital to get exercise and ate healthy meals. I was able to stay on-site at the Helen K. Rossi Volunteer Guest House and get plenty of rest. 

During this time, I knew what my mother’s wishes were. We had talked about it on numerous occasions. I am so thankful that we did; it was a gift we gave to each other. The hardest decision you may ever have to make is if and when to decide to end all life-sustaining procedures. I had asked questions, and then asked them again. I had every possible test done for my mother. I learned all that I could about what was going on; what could be done, and what couldn’t be done. Even though I had exhausted every avenue, and knew what my mother’s wishes were, it was still heart-wrenching to say, “enough”. My mother was living, but this wasn’t life. 

When I made the decision, and the medical staff removed the life-sustaining equipment, I still felt a sense of panic. But then, when all the wires and tubes were removed, it was just my mother and me. I had accepted what was not in our control. I felt a sense of peace because I knew that I was making the best decision I could, for my mother and for me, with the information and resources available.

My mother passed quietly on March 28, 2013. I thought how blessed I was:
• I had been there when she fell. She wasn’t alone.
• I was an advocate for my mother, and during this very stressful time, I also took care of myself.
• I had a strong support team—both present with me, and with me in thoughts and prayers.
• I knew what my mother’s wishes were and could honor those wishes.
• I had the time to ask questions, to learn, to process, and to say good-bye.
• I was by her side when she passed.
• But most of all, I am so blessed, because, all my life, I cherished our time together. I never had to say: “I wish I had...”  or “I should have…” 

I am thankful that I have the opportunity to continue facilitating family caregiver support groups (and the brain injury support group) for Easterseals Joliet Region. I have a much stronger appreciation for the value of support groups…

• Receive and give support
• Learn
• Develop friendships
• Focus on our needs

Having been a caregiver, and also going through loss, I have a stronger empathy and insight in to the life of a caregiver. I hope that what I have learned and experienced can help other caregiver’s on their journey. 

Time is too slow for those who wait,
Too swift for those who fear,
Too long for those who grieve,
Too short for those who rejoice,
But for those who love, time is eternity.
                     ~ Henry Van Dyke

In loving memory of Joan E. Miller, my mother and my best friend.

caregiver kathy
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