Johanna Benthal, accompanied by her mom Eileen and service dog Rae, crosses the finish line of the Jamesport Fire Department's Sound to Bay race in 2019. Photo: EliteFeats/Facebook

November is National Family Caregivers Month. We are blessed to have a caregiver support center at PBMC. This week, the Caregivers Center will offer its 7th Annual Caregiver Retreat. See https://www.pbmchealth.org/caregivers-center for details. 

November is a busy month for our family. We celebrate three birthdays which this year includes a big one for my husband! It’s also the month my youngest daughter, Johanna was diagnosed as an infant with hydrocephalus caused by a large tumor that was compressing her brainstem. 

The first time I kissed my newborn baby goodbye and made the sign of the cross on her forehead as they wheeled her off to the operating room, I was a wife and mother of four young children. 

About 10 years later and over 50 brain surgeries into this journey of raising a child with a rare disease, I had an inkling that the care my daughter needed would take me years beyond what I imagined motherhood to be. 

Now 25 years later, I regularly identify myself as a mother, caregiver, and guardian of my young adult daughter with special needs. I have to use this title no less than 2-3 times a week on the phone and in person when I call to make appointments or talk to the insurance company or other medical needs so as to clarify why my 25-year-old daughter isn’t advocating for herself. 

A little piece of my heart breaks with every conversation.

I used to resent being identified as a caregiver because in my mind I was just being a mom. But somewhere over these past 25 years, I admitted to myself that parents don’t normally assist their children with feeding, toileting, showering, and dressing much beyond eight years old. 

Please don’t refer to me — or my courageous comrades in this never-ending battle — as “caretakers.” Most of us despise this term.

The word caretaker implies that something is being taken from someone. For me, it evokes negative images of a person whose freedom is being taken away either by the person caring or by the one being cared for. 

I am a woman with hopes, dreams, and sorrows who is also a wife, mother, and caregiver to my young adult child who has special needs. I choose to care for my daughter with respect to help her live her best life with the dignity and joy every human being deserves. 

I am not taking care either away from myself or from my daughter. Caregiving is a gift I freely give. I chose to give it in gratitude so that I have the strength I need to provide my daughter with the care she needs to live her best life.

Every parent knows and experiences parenting and caring for our kids on auto-pilot. We all know those nights we have bathed them, brushed their teeth, and helped them put on their pajamas and go to bed — only to realize an hour has passed and we didn’t even realize we were done. 

Where did the time go?

Caregiving can be like that except for one thing: it often goes on for years with no end in sight. There’s no retirement party or gold watch at the end of our caregiving journey. 

When the caregiving ends, it’s usually at a funeral and so we rarely dare to ask ourselves how long we will be providing care to our loved ones because it evokes intense guilt and grief.

Grief is one of the hardest parts of caregiving that few people acknowledge or admit. In a recent discussion with another mom of a young adult with special needs, this mom expressed: 

“It’s so heartbreaking. We are in constant grief.” 

Her words struck me to the heart. 

I read between the lines and filled them in with my own experiences of grief in this quarter-century of caring. It goes against human wisdom to grieve a person’s life when they are standing, or sitting in a wheelchair, or lying in bed right in front of you.

And yet, experienced caregivers will tell you that there is a lot to grieve. We grieve the life we imagined our loved ones would live — a loss of independence, health, and normal life expectancy. 

We also grieve the lives we imagined we would live without the worry and exhausting physical, emotional, and mental demands of caring for our loved ones. We grieve the relationships that have been impacted by caregiving, the marriages lost or forgotten and the siblings of kids with special needs who had less attention from their parents because of the demands of caregiving.

Yes, in caregiving, there is much grief. 

And I promise you there is even more joy. 

My dear fellow caregivers, I know your heart and your struggles. I know you are exhausted by the never-ending tasks of caregiving. 

After 25 years, I think I have finally found the secret to finding joy in caregiving.

The secret comes in learning to embrace caregiving and our loved ones as we find purpose in the joys and sorrows of caring.

For me, it all begins with prayer. I take care of my own soul first before caring for my daughter by rising early to greet the dawn. I ask God for wisdom and listen for His voice. I surrender my day and my loved ones to Him who loved me first. Whether I am sitting in a hospital beside my daughter or in my garden or my bed at home, each day begins in surrendering my needs to God in prayer. 

Then, when I attend to my daughter’s needs, I have more strength to care and the insight to see that seemingly meaningless tasks of caregiving are providing my loved one with the dignity and respect she deserves to live her own life filled with purpose.

In addition to starting the day with prayer, there are many other strategies and routines which can help caregivers find purpose in caring. Exercise, companionship, counseling, and support are all ways we can care for ourselves so we have the strength we need to care for those we love. 

Only you really know what you need. Find the courage and ask for help. 

And learn to laugh out loud. 

I have experienced the truth of laughter as the best medicine by being attentive to my daughter’s view of life. Jo has a sense of humor and I have learned from her to see humor in everyday life. When Jo laughs, her whole little body shakes and her face lights up with joy. I’ve learned to laugh alongside her and embrace the funny side of life and caregiving.

We were all created to love others and live out our days on this earth by caring for those around us and for this beautiful place we call home. When we realize that life is more than our perfectly planned lives, and the pursuit of wealth; caregiving becomes a higher calling to love one another. 

Sometimes a month dedicated to family caregivers seems like salt rubbed in an open wound. 

We don’t need luncheons and certificates. We just need time and someone to hear our hearts. We need others to relieve us from time to time and to know that when they do, they will give our loved ones the best care that they so deserve. We need help keeping up on regular routines like cleaning the house and making meals and organizing a pantry or a closet without fanfare or drama. 

Caregivers need others who will listen to our hearts without judgment or without constantly offering strategies to fix the problem. Our loved ones for whom we care aren’t a burden. Our loved ones are beautiful human beings who need to be treated with respect and dignity.

Family caregivers — we are heroes without capes, leading quiet and purposeful lives caring for our loved ones and ourselves with the dignity we all deserve. 

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