Sunday, January 5, 2025

Sunday, January 5, 2025

Tonight's picture was taken in January 2009. We took Mattie to New York City to start his experimental treatment. In between hospital visits, we toured the city with Mattie. Getting around any city in a wheelchair, provides its challenges, but we made it work. It was on that trip that Mattie fell in love with the NYC yellow taxis! This photo captured our adventure up to the top floor of the Empire State Building. An experience that Mattie talked about for months. 

Quote of the day: Forgetting past memories doesn’t mean that you were not a part of it. You build those memories and your loved ones know it well. ~ Caroline Lee

A good friend and I were writing back and forth to each other today. In the process, we chatted about living with Alzheimer's Disease. When caring for a parent with this disease, I can assure you each day has its own challenges. My dad can ask me the same question 10 to 12 times in less than thirty minutes. Most days I answer the repetitive questions, or have him work toward the answers. On a rare occasion, I get frustrated. Not at him, more frustrated with my existence, as I do not live a normal life. 

I try to always remember that my dad, the man I always knew, is in there somewhere! Though he is a shell of his former self, who he is, hasn't been forgotten by me. I am his short and long term memory. He is very dependent on me for everything. Everything from showering, dressing, toileting, eating, medication management, keeping his schedule, managing finances, and shuttling him to appointments. It is a large responsibility and it is hard to go from being my parent's child, to the adult on duty at all times. When I think about what I survive in any given day, alone, it is amazing I am still standing. 

In 2017, the Alzheimer’s Association completed an extensive survey on the effects of Alzheimer’s on the family caregiver. The study confirmed what many who provide family care might have guessed, which is that the effects of dementia on caregivers aren’t just physical. Caring for a loved one with dementia or Alzheimer’s impacts nearly all areas of life, from our time spent with friends to the family finances. An estimated 5.8 million people in the U.S. live with Alzheimer's disease and related dementias. By 2060, that number is predicted to rise to 14 million.

Did you know:

• More than 90% of community-living adults 65 and older with Alzheimer’s disease rely on the help of family and other unpaid caregivers.
• In 2021, caregivers of people with Alzheimer’s disease or other dementias provided an estimated 16 billion hours of informal (i.e., unpaid) assistance, a contribution valued at $271.6 billion.
• The median caregiving time frame is about five years and may span an extended period, reflecting the long course of illness.
• Relationships between spouses/partners were strengthened the most from the experience, with 81% believing that “being emotionally there for each other” was a source of strength they drew upon for caregiving (Alzheimer's Association Survey, 2017). 
• Unpaid caregivers experience their own emotional, physical, and financial impacts.

I am my family's member keeper. I manage and hold my parent's memories, my memories with them, my own memories, my memories of Mattie and his incredible life, and the memories of my marriage. Truthfully it is a lot of memories to manage on my own. The beauty of memories is to share them with someone. After all, memories unite and bond us with our loved ones. 

Having lost Mattie, the memories of me, my life, my parents, and my marriage die with me. This is a very profound and disturbing reality! Truthfully there are times I can't even go there because it makes me feel so disillusioned, that I ask, what on earth is the point to all of this? We like to think that our lives are important, that we serve a vital purpose, and that our contributions on earth will always be remembered! This is definitely true for my parents, because even if they don't remember, I do! I am there to remind them, I am there to carry on their legacy. But the same is not true for me, and I would say as challenging as managing dementia care is, what is most profound and will always be is the loss of Mattie. This loss changes shape and evolves with every developmental stage in my life. Without Mattie, I have no legacy keepers and that is an earth shattering and depressing notion. I continue to grapple with Mattie's loss, but with the decline of my parents, the purpose and meaning of my life weighs heavily on my mind.