I wrote this a month and a half ago, but was unable to publish it at the time:

Lately, I’ve been thinking a lot about MEMORIES. In fact, I have been grieving lost memories, even though I didn’t even know that was possible. A while back, my dad was diagnosed with dementia at only 59 years of age. A man who I always viewed as healthy and strong was suddenly behaving like I had never seen. My tall, handsome father was now walking so slowly, bent over slightly and shuffling his feet. He was constantly anxious, crying so much about the pain he couldn’t describe or words he couldn’t articulate. When I would visit he would look at me intently trying to figure out who I was. Sometimes I was his cousin in his mind. Other times, I was his sister. He just wasn’t sure, so he would look at me intently trying to figure who I was. He just wasn’t sure, so he would look at me earnestly for a few seconds and then cry. Sometimes I wonder if he is mourning his memory, too.

At times, I feel a little guilty that it took so long for us to realize what was happening. My dad visited us from Texas every 4-6 months, and each visit he would cry more and more when it was time to say goodbye. At my wedding, I noticed how slow he was walking me down the aisle, but honestly, I was so busy and distracted I didn’t really think twice about it. After a car crash and so many emotional ups and downs, it all ended with a diagnosis. Though we couldn’t see evidence of his mindset before, reality started to sink in for me as my mom described his living conditions she cleaned his home in Texas. Aside from the overwhelmingly large mess, my dad had started putting post-it notes around the house reminding him of things he needed to do. His brain was failing him, yes. But something I will never forget about my father is this: throughout that whole period of undiagnosed dementia, he had somehow managed to always show up to work at the job he had since he was 19 years of age. That’s my dad.

My father has since retired from his job, which is definitely an interesting experience when you can’t remember how to sign your name or understand what any of the documents mean. Right now, my father is living in Louisiana with my mom. He remembers how to eat and drink, but has to have help with most other things. His anxiety level is always high, and he doesn’t like being alone. He thinks my mom (his main caretaker) is three different people, none of whom being his wife of 25+ years. In fact, once when she asked him who he thought she was, he said his mom. When she said that she wasn’t, he told her he did know she was someone he should respect. That’s my dad. One thing that continues to amaze me is that although he may not be fully sure about the present, he is very aware of his young memories, my sister and my childhood, and his all-time favorite topic: music. He can go on and on about music, dementia or not. David Ruffin, Marvin Gaye, Tammi Terrell, etc. He’ll tell you everything you need to know plus some. He might even sing a verse or two. Yep, that’s my dad.

As my father loses more and more of his memory (and himself), I have begun to realize how much I don’t know about him, his childhood, and his family. MY family. How have I wasted this much time? I look at old pictures of my father as a child, my grandma’s graduation picture (possibly from nursing school), and my grandfather’s military photo and I wonder what kind of people they were, what their voices sounded like, or if they had any little quirks or unique personality traits. It amazes me how much of a story a photo can tell without giving away anything real. I yearn to know more about my family, so much it hurts. So, I’ve decided to take action while there still is time. I will become a Memory Collector for my family. I will do all I can to preserve the memory of my family members as best I can. This is something I have to do, not just because it interests me, but because my family’s story deserves to be passed down.

I’ve refrained from telling this story for too long. Maybe because I felt like I wanted my space to process everything going on, or maybe it was because I was embarrassed or ashamed. Whatever the reason, I know now that I am stronger than ever emotionally, though I have my moments (or days) of weakness. Yes, strength has to sleep too. Most importantly, I’ve realized that dementia is nothing to be ashamed of.

 

Have you personally dealt with dementia in your family?

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