This is a challenging post to write. I am looking at the blank screen and I hope that the right words come to me as I sit and try to discuss something that is hard to be both honest and respectful. During the 2019 December Photo Project season, I took some time to interview my mom. It turned into an interview with my mom and dad. I will cherish that recording forever, I am sure. It was a time for them to reminisce. I merely found a list of questions online to ask grandparents and began to ask my mom. She told me stories of her youth, her family, her high school memories, meeting my dad, and her first car. We were all in fits of giggles are she described the vehicle provided by her parents for her use. My mom grew up as "comfortable" - that was her word. I would doubt many would call it comfortable now but it was a different time and the concept of "need" was much different (and more realistic). Since they did not have a lot of extra money, they made do with a car that didn't have a functional starter. Mom giggled as she mimed starting her car with the door open and using her leg to propel the car forward to pick up some momentum - something of a cross between a scooter car and a Flintstone car. She made the point a couple of times that it was critical that she parked on flat or downhill surfaces. She needed that momentum so she could pop the clutch to start the car. Just the vision of her driving around the block to avoid parking on an uphill slope really made me giggle. I try to imagine my kids as teenagers accepting this as their reality and embracing it today. I don't know if my mom complained to her parents but I feel sure mine would complain to us.
Watching my parents laugh, smile, and finish each other's sentence to each question will likely go down as a top ten memory for me. I knew many of the stories already but I am glad to have them memorialized in their voices on a voice recording. I learned some new things as well.
What prompted me to interview my mom is because I want to know more about her now more than ever. My mom is an amazing woman. She is my smartest parent - those who know my dad would be surprised to hear me say this - but it is true. This is not an insult to my father. He is an incredibly smart man and accomplished in so many ways. But even he would tell you, mom is smarter. One of the things I learned in the interview is how close my mom was with her dad. Grandpa lived a full life, starting life impoverished, working as a Baptist minister and eventually as a high school teacher. My mom's high school teacher.... and boy, he didn't cut her any slack. He had a thirst for knowledge and was a voracious reader - both qualities my mom also has. She had this thing she would always do that made us roll our eyes at her when we were growing up but now as an adult, I see what an incredible quality it was. She never, in my memory, let a chance to learn go by. If we asked her a question, no matter how minor, she would search until she knew the answer. Remember the days of the two bookshelves full of Encyclopedias? That woman gave those suckers a workout. If she didn't know, she was going to learn even if you rolled your eyes and walked away.
The unfairness of it all is that despite her amazing brain and her unbelievable wealth of knowledge she has developed over the years - Alzheimer's is stealing her connections to both her knowledge and her memories. Even though I have always known what a tragedy Alzheimer's is - the weight of the tragedy is so much heavier when it is happening to your rock, your safe place, your best friend.
Tears fill my eyes even as I write this and I am filled with that frustration that comes when it just isn't fair. For all of my life, my mom has been able to make nearly everything better. If I had the flu, she would be by my side, making some chicken noodle soup and giving me a cool cloth. When I was a grown woman with a stomach ache that didn't make sense, she sat with me at the ER until it was diagnosed and I was through surgery. Once my husband returned to town, she quietly went on her way. Her work was done, it was better. We have always been dealing in a world where things get better. . . .which is a far better place to live than when it won't. What we wouldn't give to be able to make it better for her. How far we would go if we could make it stop. How many hours we would sit in hospitals and waiting rooms if we could just protect her brain, her memories, her hobbies, her relationships.
The biggest cruelty of Alzheimer's is that it is progressive in nature and so disruptive along its path that it is really hard to appreciate the best of times. Right now, my mom is still doing well, remembering most things, and her only symptoms are repeating herself or having trouble tracking the more complex things. She has bad days when the connections are weaker and it serves as a window to what is coming. The hardest part of this is that she is fully aware. She is still smart, bright, wonderful and kind. She has always been empathetic and caring. This means she can read nonverbals like a rockstar. So she sees in our eyes when she has repeated herself and the look in hers when that realization hits could crumble a mountain to dust. Her eyes well with tears of sadness and flashes of frustration that her brain isn't behaving properly. Those insights into what she is losing steals the joy from what, someday, we will wish we could get back to. The losses are so abrupt, unapologetic and heartbreaking that it gets hard for her to see what she still has. Even more cruel is that by appreciating the silver linings, it is almost as if you are cataloging what is yet to be lost. Imagine the unrelenting fear and dread this disease, and any incurable progressive disease, imposes not only on the patient but also those that love her.
I did ask her what those who love her can do for her. What I found the most interesting about her answer is that it is what we should be doing for all humans, especially those we love. "Please be patient. Be kind. And if you don't have to tell me that I forgot, please don't." This is a frustrating and humiliating experience for her despite the fact that everyone knows it isn't her fault. That doesn't change the way it feels to her. So we will be patient. And we will be kind.
Can we talk for just a minute about the role of the caretaker? My dad is so loving, patient and kind with her. More so than I would have ever thought he could be. His love for her is evident in his day to day efforts to make her happy, comfortable, and keep her normal life going. He works to create quality of life for her each and every day. He actively keeps her engaged in the activities that bring her joy, give her purpose, and allow her to connect. Typical responses to the forgetfulness of Alzheimer's for caretakers is often frustration with the repeating of information and conversations. He is human and this is occasionally his experience, but I am impressed that the number of times he gets cranky is low and how he is able to bring levity to the situation. His line is, sometimes you just have to laugh or you might cry. The weight he carries is similar to hers as he watches this unfold before his eyes.
Some other heroes in her world are my brother and her long time bridge and Grazer friends. When she was interviewed, she mentioned how wonderful my brother is for her. He gets her laughing and makes her forget her troubles. He has a gift for bringing people joy and this gift has been a particularly wonderful blessing to her. My mom's friends continue to be true friends in every sense of the word. I know many people who would avoid someone who is getting forgetful but her friends embrace her, they meet her where she is, and make it possible for her to still play bridge with them. Mom tells me she is sure she isn't very good anymore but they always tell her the suit right before it is her turn. My mom really appreciates one of her friend's sayings. . . ."It is what it is." That saying is getting her through this experience one day at a time.
Things I am grateful for.....
- For becoming more intentional
- For becoming even more aware of how much I love and cherish my mom.
- The gift of this illness is that we don't take any day or any moment for granted. I love my trips with my mom, the holidays, getting to cook with her, and calling her on my way home from work.
- For my Dad, becoming more aware of the depths of his love and kindness.
- For my brother, for his gift of humor and the importance he plays in all our lives.
- For the present, because the here and now just isn't that bad.
- For the continued research, that though it will be unlikely to help my mom, I am hopeful it will save others from this experience.
- For this blog post - may it move your heart to turn toward those you know that may have Alzheimer's. Be like my mom's friends and embrace them when they need you most. It can be an isolating illness - don't allow it to be.
And remember my mom's words:
Be Patient. Be kind. And if you don't have to tell them they forgot, please don't.
