Caring for a family member with Alzheimer's has its emotional ups and downs
by RJ Thesman
It happens every time.
As soon as I turn away from my mother’s door in assisted living and walk down the hallway—away from her—the emotions hit me.
You’d think I would be used to them by now. For 10 years my family struggled with Dad’s dementia and all the accompanying emotions. Now that Mom has been diagnosed with Alzheimer’s, I should expect the same feelings.
But still, the emotions grip my soul, and I cry all the way to the car, then sit in the driver’s seat until my vision is no longer blurry.
When we become caregivers, certain emotions come to live with us. One of these emotions is sadness. The long goodbye, aka Alzheimer’s, triggers a sadness unlike any other grief I have suffered. It is not the unexpected grief of a sudden loss—a miscarriage, unemployment or illness—but rather the day-by-day grief steps caused by the regressive nature of the disease. Even though Mom remembers me today, she will someday forget how to introduce me to her friends in assisted living. Sad, but true.
Another sadness lies ahead. If Mom does not graduate to heaven within the next few years, we will have to relocate her to the nursing home section of the facility.
“Never put me in a nursing home.” I can still hear the echo of her plea.
Sadness reinforces the truth that at the end of this particular journey, my siblings and I will be orphans. Grief will multiply.
Another emotion, rejection, surfaces every time Mom forgets a memory that is important to me. “Remember when?” is no longer a game we play. And when Mom does hesitate with my name, rejection swallows logic.
I know she doesn’t mean to reject me. Somewhere, cached in her soul is my baby face, her firstborn. But I miss our shopping trips and the way we used to talk about the books we were reading. I no longer hear her laughter, because she can’t comprehend jokes anymore. When I send her cards and she shows them to me, clearly imprinted with my signature, then tells me they are from someone else—I feel rejected.
Although sadness and rejection bring pain, guilt is the emotion that tortures me.
No, Mom, we never wanted to put you into assisted living, but you couldn’t live alone anymore, and all of us work long hours. No one else can take care of you. I’m sorry and I hate it. I feel guilty.
When I hug her goodbye and tell her I have to go back to Kansas, she can’t understand why I’m leaving. Reality screams that my work is a state away, and my life cannot make room for my mother. I am the long-distance caregiver in the family, demoted by miles and the work I cannot do anywhere else. Guilty again.
Even while writing this, I feel guilty that my emotions are front and center when Mom deals bravely with fear, rejection and sadness.
It helps to journal about these caregiving emotions, include them in my next book or vent with a friend. The emotions of caregiving are now my reality, and I know they affect me deeply because they are foreshadowed by love. If I didn’t love my mother so much, I wouldn’t care.
And because I love her, I’m sad that she can’t be who she used to be.
As the author of The Unraveling of Reverend G, RJ Thesman writes about Alzheimer's, dementia and how to find hope when life unravels. She is an author, editor and certified Christian Lifecoach. Her website is: www.rjthesman.net.
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