Learning Vulnerability for the Sake of Your Loved One Living with Alzheimer’s

There are good days and bad days for Danielle Spaar. She is a caregiver to her parents, including her father who is living with Alzheimer’s disease. A former Marine, her father “was the one everyone could depend on,” said Danielle. “He was the calm parent to talk to about your problems.” 

Danielle and her father had a difficult day recently when they returned home from a family vacation. Their routine was out of sorts, and emotions were high on both sides. However, the challenging day grew into a useful exercise in vulnerability for Danielle. 

“As a very independent person myself, I can’t imagine how he is feeling.  Being so out of control of the things happening to him…I’m still glad I let him see ‘behind the curtain of strength,’  just for a moment,” shared Danielle.

Danielle grapples with being open about her struggles as a sandwich caregiver—caring for a parent and child at the same time—and describes how vulnerable she feels as both a mother and a daughter. Danielle describes the first time that her daughter saw her cry, and how this experience caused her to reflect on what it means to be a parent and to show your emotions.

Danielle reflects on the man her father was before his illness—a “ripped” young man who enjoyed exercise and entered the Marines in the middle of culinary school. Now, she notes that her father finds comfort in the simple things. He enjoys listening to music from the 60s and watching old movies with his family. Danielle and her father enjoy a routine of morning walks with Danielle’s labradoodle, Tony, as they engage in “familiar” conversations. 

Danielle recalls times when her emotions got the best of her and she lashed out towards her father in frustration. She has an important reminder for other caregivers: “Don’t bottle all [of] that hurt inside.” 

Through the Alzheimer’s Association, Danielle benefited from the Care Consultation program and Early Stage Support Group. She sees parallels between the struggles that she experiences as a caregiver for her father and managing the behaviors of her teenage children. 

For now, Danielle plans to continue making memories with her father—“ones he will not remember, but I will,” said Danielle. Her story highlights the complexity of staying compassionate with a loved one living with dementia, and the fatigue that can accompany being a caregiver. Feelings of uncertainty, frustration, and sadness are common, and it is important to seek emotional support as needed. 

The balance of caregiving for a parent while parenting children is complex. Resources and support are available. Find a support group to connect with individuals who know what you’re going through here. Other resources are available at alz.org/illinois/helping_you.

Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

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