When I am interviewed for a podcast or radio show I seem to cringe when I am introduced as my mother's caregiver; for in my very soul, deep in my heart, I am first my mother's daughter and then her caregiver.
After looking up both words in the dictionary I found several different meanings. A daughter is a female child or person in relation to parents; a caregiver is a person who cares for someone who is sick or disabled.
A name I wish to be called is mom's "caredaughter". Although "caredaughter" does not exist in the dictionary I truly prefer the way it sounds.
In the last several years I know our roles have reversed, although what remains and cannot be taken from me is that I am her daughter .
Recently, I shared with a friend that on my last visit with mom it was so meaningful to just hold her hand. Since my return my friend asked, did I miss holding my mother's hand? My answer was simple. "No I don't miss holding her hand, what I do miss is not being able to share my life with her. Mom is still alive yet the world she now lives in is a world I may not exist in."
I then reversed the question and asked "can you ever imagine one day not knowing that you have two children named John and Alice, or that you are married for forty years, or that you have two sisters?" She looked at me and could not answer.
I have come to realize that unless you have a loved one with Alzheimer's you cannot really understand this disease.
Since mom is living with this disease for over thirteen years I know how fortunate I am to still have this time to spend with her, yet throughout the years, I have been saying my "goodbyes".
Alzheimer's disease is not only mind boggling, it also can be a very long journey as we watch our loved ones disappear. They no longer live in our world so we somehow must learn to live in theirs.
Regardless of how many years mom and I may have left, today and always, she is my mother, and I will first always be her daughter. I love you mom, more than words could ever say.
Check out Lisa Hirsch's book, "My Mom My Hero," here.