When the chaplain came, she handed me a quilt handmade with love by volunteers for hospice patients. The chaplain had become a friend to me and my mother over the years of hospital visits for me and my mom. Each visit to the hospital, I would ask for a chaplain to say a prayer with the two of us. After nine years and over 60 hospital stays, she knows us by name.
Today the prayer and our time with the chaplain was more precious as it’s the last prayer we shared with her by Mom’s hospital bedside; tomorrow Mom goes home to start her hospice journey.
The chaplain said the quilt could go home with us and, after mom passed, I could have it. As I look at that quilt, I see how its beauty is so much like our care journey. All the random pieces that had to be sown together to make what is one of life’s most precious works of art.
Each piece has its purpose and place
🪡 March 16, 2013 at 3:42 p.m. the day I got the call Mom had a stroke.
🪡 The 5-month hospital stay that mom got to come home from after being told she only had a 1% chance to live for the first 30 days.
🪡 The 300 pictures I printed of our life to create flashcards to teach her to talk again because I knew reminding her of the reasons she had to fight — and the love she had in her life — would motivate her to speak again.
🪡 Leaving my 20-year career after taking three years coming to the realization that I wasn’t just a daughter caring for a mother, I also needed to accept that being Mom’s caregiver was my new life.
🪡 The first steps Mom took with physical therapy, and the tears we cried as we held each other and cried tears of joy and hope.
🪡 The day she could no longer walk and the realization she would be wheelchair bound for the rest of her life.
🪡 Learning how to hire and manage a care team — many of whom, over the years, became family friends.
🪡 The community resources that made the journey easier.
🪡 The absolute devastation of becoming financially, physically, emotionally, mentally, and spiritually bankrupt that almost killed me. Little did I know what felt like my life completely shattering was actually a clearing of the path for a life more beautiful than I could have ever imagined.
🪡 The hundreds of arguments about, “you need to take your pills,” “let me hire more caregivers,” and “drink your water” and the multiple times being kicked out of the house and wanting to quit my job as mom’s caregiver.
🪡 The hundreds of tender moments me and Mom had telling each other how much we loved each other and sharing stories of our life together always ending with the words TEAM MOM and a kiss.
🪡 The 10 trillion times we felt defeated thinking, “this time is going to break us,” but it never did, and we came out stronger as team mom.
Just like the quilt, all the random and delicate pieces have been sewn together: some not so pretty, others just a random piece, some delicate, and many absolutely beautiful that make the whole piece, but it’s all of those pieces together that make it a work of art.
Caregiving is not easy. We get thrown into it with no training and no help, and life can become lonely, but caregiving also changes us. It makes us stronger, deeper, and more independent. Most importantly, it teaches us and lets us experience an amazing level of love, trust, and compassion that we didn’t have before we became caregivers.
Today the doctor said to me, “It’s VERY clear your mother is alive today because of the way you’ve cared for her over the past nine years, but your mother is actively dying.”
I’ve spent nine years fighting and holding on tight to keep her alive and well. Now we are stepping into the phase where we both have to be more courageous than we’ve ever been. Now we get to learn how to let go and instead of saying, “we got this,” we are going to fight our way and make it through this. And now I get to stand for both of us and say, “Mama you’ve done such a good job. You’ve been so strong and courageous. Our time together has never been a burden but a huge blessing. I’m so grateful we’ve had such a beautiful love story, but Mama…it’s time to rest. It’s time to let go.
And like the quilt, the edges of my caregiving journey will be sown, the final touches added, and the work of art complete and ready to be shared with someone. Our love story will continue to be told because, just like that quilt, it’s meant to be shared. Our hope is that it will bring comfort to other caregivers who are walking through their own care journey just as this quilt is bringing comfort to us.
With love….TEAM MOM 🪡
Editorial Edits by Christina Best
Christina is available to speak on the topic of caregiver relationships and empowerment. Please contact her for details. The information shared is for general information only; please consult your healthcare team, legal, or financial advisors for guidance on your situation.
