Weekly Newsletter

September 4, 2024

The Healing Power of Telling Your Story

Here’s the story of 3 caregivers of family members—whose loved ones have now passed.

The first story—"Healing Myself”

My name is Cleo. I took care of my mother for 10 years. Though she lived with my sister, someone had to be with our mother all day, every day—while my sister was at work. That was me. Over time, the job of caring for my mother became more and more intense as her health declined. We are a family of 6, and we all lived close by our mother—somehow the job fell to me and the sister my mother lived with.

It is in my nature to try and be there for others. So, of course, I stepped up. Then one day, during a checkup with my physician, I learned that I had severe hypertension and that it could result in dire consequences. We tried medication, but that didn’t work. So I told my sister I couldn’t continue to care for our mother. I gave her a 2-week notice. She told me she had changed the locks and I could throw my key away. I didn’t see my mother for the next 3 years.

Then one night—3 years later, I woke up and knew my mother had passed—August 23rd, 2015. So I went to see my sister, to see how she was doing with the passing of our mother, and offered to help her with my mother’s things. When I returned, 2 weeks later, everything that belonged to my mother was gone. I never had the closure of being with my mother at the end or even have something of hers to keep.

It’s been almost 9 years now. A lot has happened. I am feeling better. I am learning to swim. I go to the senior center frequently. I volunteer to help where I can. In 2018 (before the pandemic started), I happened to see a support program for caregivers advertised at the center near where I live. Even though I was no longer caring for my mother, I wanted to join that group and see what I could learn. That was and still is an amazing help for me. I have found understanding, support, and recognition from these other family caregivers. Now 4 years in this group, they have helped through some very trying times. They have helped guide me to get the help I need through my health care provider. I can truly say, as James Brown says, “I feel good.”

I really want to tell you all here how grateful I am to DayBreak, Karen, Susan, Ofra, and all the rest of the wonderful caregivers that I met through DayBreak. And thank you all today for allowing me to share my story.

The second story—"Double Whammy”

Hello, I’m Sarah. I have 2 sisters who live close by. We are and have been very close with each other and our mother (who also lived close by). Our mother had a traumatic brain injury (similar to a stroke) that resulted in her steady mental decline. I joined the support group that Cleo talked about here—with DayBreak—in about 2018. Myself and one of my sisters attended the weekly sessions at the senior center near us. We learned a lot about the needs of caregivers and the inexorable process of our mother’s inevitable decline. She gradually lost more and more mental and physical function and had to have 24-hour care. She came to live with me and my husband.

A day came, as I was consumed in my mother’s care, that I realized our energy bill hadn’t been paid—because our lights went out! This was about the time that I completely retired. It was a wake-up call! It was the beginning of my beginning to recognize the inexorable and steady decline of my husband. His complex medical issues, coupled with their effects on his cognition, resulted in me becoming his caregiver as well. Our 2 daughters then stepped in to help—they really supported me!

With the help of my sisters and our daughters, the next 3 years of my life were spent as the caregiver for 2 beloved family members. Mom died in 2022 after 5 years of care. I continued caring for my husband, who gradually declined. All my waking energy was more and more consumed in his care. I know in my mind that I began my grieving for these 2 beloved family members the moment I realized that they would never be the same. But yet, and still, during that time I somehow hoped, as absurd as it may seem, that they would get better and I would have them back. Only now can I accept they are truly gone. They are still with me in my heart.

Now, it has been 3 months since the passing of my husband and 2 years since the passing of my mother. I am beginning to find myself again. I see that though I had to give so much of myself and at times it felt crushing, I am still whole. I chose to be their caregiver. They are gone, and I miss them dearly—but I am okay. My daughter has had a baby girl, now two and a half months old. A dear blessing, my first grandchild. Harriet.

The third story: “True Love”

I am Pamela, and my husband’s name was Roy. We were married for almost 58 years and did most things together.

After Roy retired, he stayed active and engaged. He was a joyful, loving husband, father, and grandfather. Some nine years before his death, he started to have memory problems, putting post-it notes on a mirror to remember things. Eventually he was diagnosed with vascular dementia. Changes in behavior occurred over time, like getting lost on walks and eventually losing the ability to take care of himself. After eight years, he became bedridden and was unable to speak intelligibly, except for some amazing moments of exuberant clarity, loving, and responsiveness in a very special way. He would hear family members talking and might respond with joyful, clear utterances. We took to posting every lucid comment on the wall by his bed.

The last eight months of his life, Roy was surrounded by family support and hospice care, with his hospital bed set up in the dining room. The room became the center of our universe, where we all bubbled together during the pandemic caring for Roy. This was a precious time of family bonding, facing the long goodbye together.

Now, three years later. I can appreciate being the first to go. The one left behind is left to grieve and pick up the pieces. I remember back when Roy could speak, he said, “You’re going to miss me when I’m gone.” He knew so much more than I could take in at the time. And, yes, I miss him very much. Roy is always with me, and I am reminded of the quote by Thomas Campbell: “To live in hearts we leave behind is not to die.” Roy is in my heart.