Discovering Dementia
Discovering Dementia
My mom lived with dementia for ten years before she died in 2021 at the age of 83. My brothers and I suspected she had frontal lobe dementia. Common characteristics are loss of inhibitions, lack of interest in others, loss of empathy, compulsive behaviors, and change in diet. During the beginning of her dementia journey, my mom was focused on exercise, controlling food, and playwriting. All three absorbed her, and she slowly stopped asking me and other family members about our lives. There were no boundaries with strangers, and she would act silly in public. As the years progressed, her ability to read social cues, regulate her hygiene, safely drive to and from places deteriorated, and she needed care through assisted living, then memory care, and finally my brother’s home. My mom pre-dementia was a kind, joyful, loving person. Fortunately for the family, those characteristics remained with her, and although near the end of her life she didn’t know that I was her daughter or my name, she accepted my affection.
My Mom and Me
As the youngest of three, and only daughter, I valued time with her, having long talks and listening to her guidance. She always made me laugh and I respected her zest for life. A true optimist, she was a dedicated walker, dancer, bicyclist, avid reader, and wonderful to her children and grandchildren. I am 56 now, and as a young woman, mom and I became very close, considering each other best friends. After my Dad passed away in 2005, she and I would spend hours together, learning on eachother, crying, and reminiscing. That is a memory that I’ve held on to, because it was one of the last times I saw my former mom, the one filled with empathy and emotion. Once so close, I found it odd that mom stopped reaching out, but when we did speak, I could tell she was keeping lists of dates and facts, trying to prove she was ok. But she wasn’t.
Dementia isn’t just about a person forgetting things, names or events. It's about the relationship you once had become radically different with roles reversed. Our simple ways to connect, such as watching a movie, sharing a meal, having a glass of wine, were no longer the same. I stopped receiving birthday cards. She no longer understood what Christmas was. I had to mourn all of that, which I did for many years.
Grief Cycle
I was losing the most important relationship of my life. Prior to having mom evaluated, anger, denial, and bargaining were wrapped into one. I was angry that she could no longer read my emotions. I bargained by fantasizing that medications would make her better. After finally having mom formally evaluated, the sadness kicked in. I learned not only of the dementia diagnosis, but that my mom, once a teacher, could no longer tell time.
Traveling the three hours home from her care facility was mentally exhausting, and those times in the car were where I grieved most. Although she was always excited to see me, she was vulnerable, and it was hard to leave her and say goodbye.
The last year of mom’s life, she moved into my brother’s home, and that is where I began to move into the acceptance stage. I finally could breathe, and felt she was safe and being well cared for. I would sit beside her and hold her hand, feeling like I was her caregiver as she was so childlike. I just wanted her to feel loved.
What surprised me was after she died, I rarely cried. Now I know that I was mourning all along. The inability to easily retrieve memories of how she was prior to dementia also impacted my ability to more readily move on. I hope one day to retrieve more, but for now, I will cherish the ones sitting by her side
Suggestions for How to Cope
Join a support group
https://www.alz.org/help-support/community/support-group
Connect with a life coach to develop coping strategies
Read articles and visit websites regarding dementia and grief
https://www.psycom.net/ambiguous-loss
https://www.dementiasociety.org/
