Tonight's picture was taken in December of 2002, Mattie's first Christmas. Mattie clearly did not understand what was going on or why I was snapping photos. But I am glad I captured all the special moments as well as the day to day adventures. When I look at this photo, the notion of childhood cancer was not even on my radar scope. At that moment in time, I thought raising an 8 month old was challenging. Little did we know what we would have to face as a family.
Quote of the day: Though those with Alzheimer's might forget us, we as a society must remember them. ~ Scott Kirshenbaum
Tonight's quote maybe true, but what I know about caregiving for a loved one is unfortunately my ability to remember the once healthy person dwindles. My mind gets fully consumed with the debilitated person. This altered person becomes my new reality and it takes a great deal of work to REMEMBER the person I once knew! I certainly went through this with Mattie. I worked hard to keep the spirit of the healthy little boy alive for Mattie while he was battling cancer. But some days it was hard to do given how cancer changed Mattie's mind, body, and spirit.
Though my dad is not dealing with cancer, his mind has been ravaged by dementia. He is not even 1/16th of the person he used to be. He has no memory of his former life and instead I have to be his institutional knowledge. But I am not his wife, I am his child, and therefore my understanding of his life and experiences are different. I have a different lens. On top of which, my parents lived 2,500 miles away from me during my adult years. So in essence we were living two separate lives. I can't remember things for him because I did not share them with him. I have many issues around my parents decision to stay in Los Angeles while I remained in Washington, DC, as I had encouraged them to move and stay in our region back in 2005. However, after trying a relocation to Washington, DC for two months, they quickly moved back to LA in 2005 and remained there until I had to move them East in 2021.
Last evening, I went to a friend's house for a small social gathering. Social gatherings and me don't always go well. In fact, I would say the majority of times they leave me sad and depressed and last night was no different. Holidays are troubling for me, and when women chat, it is natural for them to talk about their children. I can absorb so much of this talk, but now given my intense caregiving role, my patience and tolerance are VERY low. I also think all family caregiving is not the same. Women may refer to themselves as caregivers, but it is impossible to truly comprehend the day to day grind of what I manage unless doing it yourself. It is a night and day experience managing a loved one's care from an institution, rather than in your own home.
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