Our thanks to Janice for sharing her moving story about caring for her mom, Gabriella. Janice captures the complexity of caregiving – the often-conflicting emotions of love and anger, patience and frustration, compassion and guilt. At the same time, Janice reminds us not to overlook the simple moments of connection and joy as she reflects on the lessons she has learned from her experience as a caregiver.
“It was a journey I would have preferred not to take, but a journey in hindsight,
that I’m glad that I traveled with her.”
Gabriella, my mother, was a smart, strong, independent, and caring person until dementia slowly robbed her of her vitality, her love of life, and the abilities to perform the simplest of daily tasks. This dreadful disease also robbed me of my lifelong best friend and the woman her family and friends and I had known, depended on, and loved dearly. She had a sharp mind, a sharp wit, and was always a force to be reckoned with; but she was always kind and caring to everyone she met.
When my mother was diagnosed with dementia, it changed our lives in ways that we could have never imagined. This lovely lady who took pride in her family, her home, her garden, and who enjoyed shopping, doing her hair, nails, and makeup, watching TV, reading, playing Bingo, cooking, and cleaning – yes, she even enjoyed cleaning – slowly ceased to exist. She began to lose interest in many of the things she loved to do – the things we loved to do together. She no longer recognized her home, she often didn’t recognize me, her only daughter, her only child.
There were times when my mom was agitated and combative. She would hear and see things that we couldn’t see. She would say the most hurtful and heartbreaking things to me. She had dementia, but as her caregiver, I was on this journey with her. It was a journey I would have preferred not to take; but a journey I would, in hindsight, be glad that I traveled with her. While dementia changed her, it also changed me. It has given me a greater understanding of a disease that many face and one that I, too, may face as my own health challenge.
Traveling this journey with my mother was a gift, although it certainly didn’t feel like it at the time. I was exhausted from sleepless nights, felt scared and stressed, and depressed. I felt like I had no life of my own. I didn’t know anything about being a caregiver. I had no nursing skills to try to care for her, but I learned. I learned through trial and error, and did I make a lot of errors! I learned how to speak with her to try to make her feel safe, clean and fed, to engage her in activities, manage the household, her medications, doctor’s and nurse’s visits, and all else that goes into being a caregiver. There were times when I wasn’t sure how much longer I could hold on. I don’t think mom knew how much longer she could hold on or if she even wanted to hold on, but we tried our best for each other.
I was very grateful to receive the Alzheimer’s New Jersey weekly online newsletter and get the latest updates. The $1,000 respite grant I received was used for home healthcare. The webinars helped me to better understand dementia and provided helpful tips on how to deal with the stress of being a caregiver, as well as tips on how to handle agitation, combativeness, sundowning, etc. Thank you for these services!
My mother passed away this past December. The day she died, mom looked at me so intently and said, “You took good care of me.” Later that day, mom told me that she loved me, that she really did love me.” The times and moments when she had clarity were priceless and made this difficult journey worth every effort.
What I learned on this journey with my mom is how to do my best to be more compassionate, patient, and respectful. More importantly, I learned that while a person with dementia may be confused and agitated at times, it’s important to maintain their dignity. That same compassion, patience, respect, and dignity should also be shown to their caregivers. We, too, can become confused and agitated at times. Our confusion and agitation stems from the fact that we are losing our loved ones a little bit every day, a little at a time.
Janice
