Saturday morning, I called home, mom answered the phone. “Hi, Mom! How are you?” I said. Silence. A few seconds pass, I could tell she was trying hard to process the voice and words spoken. I paused, hoping she would recognize my voice. I proceeded to say it’s your daughter but again nothing. The conversation lasted maybe 5 minutes, my mom has since forgotten but it has left a lasting impression on me. She doesn’t know me.
Dementia is a terrible disease for everyone involved. Mom’s fate was set in motion some 7 years ago but the more I think back, the more I believe, it started much earlier. I always thought of it as an old person disease but mom was 60. How could this be? A retirement cut short with so many dreams left unfulfilled.
Her first signs were not memory lapses but uncharacteristic behavior, angry outbursts and speech. Dad and most of my family members were in denial. They were angry with my mom and blaming her for her behavior when she had no control. I knew in my heart Mom was suffering. She suffered several years of misdiagnosis and we still never really got a definitive diagnosis. In my own research, all symptoms point to frontotemporal dementia. The shrinkage of tissue and reduced function in the brain’s frontal and temporal lobes, which control planning and judgment; emotions, speaking and understanding speech; and certain types of movement.
Mom’s words were the first to go. She was able to read and write but not speak the words. She would have angry bursts and her emotions were all over the place. It has progressed to where she no longer understands any words, written or spoken. I can’t imagine loosing ones ability to speak, read or write. It really has shrunk her world. She wanders around the house not knowing what to do with herself and sleeps a lot. Her memory has been the last to lapse. Ever year, I wonder, will she recognize me next summer when I fly home?
She is still at home with Dad but can’t really be left alone. Dad is her primary caregiver and I can see the toll it is taken on him. She can no longer cook, do her own wash, and personal hygiene is now becoming an issue. She is very much like a kid. Country drives and long walks are what make her happy these days. Friends and Family have distanced themselves. I guess it’s easier to ignore but how can they abandon both Mom and Dad when they need them the most? I feel like I’ve been one of them and the guilt and sadness can be overwhelming at times. I go home as much as I can but it will never be enough.
I can’t imagine what my Dad is going through. How hard it is to watch his childhood sweetheart, slowly change to a woman he no longer recognizes. Being a caregiver is a very lonely job and asking for help is not Dad’s strongest suit. I often pray that family and friends will just drop in and take mom for a drive, giving Dad a break and mom some happiness. Home care has started but it is not enough for Dad’s mental health.
The hardest part is that I can’t help her. She was and has been there for me so many times over the years and I can’t help her. I can’t bring her from the darkness to the light. Darkness is taking mom from me just as I am finding the light.
Mom is still breathing but not here…
Love and miss you mom…oxox
One Quiet Gals Journey