On the Little Things Lost

I am still finding it really difficult to write. Countless posts have ended up in the drafts folder, languishing. My mind is too jumbled, my heart too heavy. We all have our periods of challenge and heartache at some time or another, and I am no different. I know how much writing helps me calm my mind and think through things, the process usually untangling the knot and bringing clarity to my path forward, and so I am continuing to try.

I am going to share some of this difficult period as I have other challenges. This blog began as a way for me to process the decline and inevitable loss of my mother over the last two years of her life. If it helps even one person to know they are not alone, it will be worth it. Dan has entered an Alzheimer’s clinical study at UAB and I will be there with him every step of the way. I am doing my best to be Poppins, staying positive and upbeat for him, listening to him, reassuring him that he never needs to worry, that I’ll be there for him no matter what. Inside? I’m scared and overwhelmed, I’m deeply sad…and I am angry that this cruel disease could conceivably steal away this man who is my heart and my life.

Alzheimer’s. My Granny, my father’s mother, had Alzheimer’s the last part of her life. She and I faithfully wrote letters to each other and I noticed that she was repeating phrases several times throughout each letter. I was young and didn’t really understand what was happening. I learned from my younger sister that our dad had symptoms before he died. Dan’s father was diagnosed with Alzheimer’s. All of them robbed of their memories to various degrees. Better to understand the enemy and how to at least slow it down.

Shiva is a daddy’s girl, for sure.

Dan is still very much Dan. He is smart as a whip, funny as hell, leading a busy and fulfilling life as a retiree, running our AirBnB, teaching yoga classes for the YMCA, working on our 103 year-old home, and supporting me during this busy time of my career. I couldn’t do everything that I do without his help. He is only in the early stages of this battle. His neurologist had him do an MRI of his brain and a spinal tap to check for the presence of the beta amyloids that signal the possibility of Alzheimer’s. They are there, along with shrinkage of the frontal lobe. His symptoms right now deal with short-term memory and recalling directions to places he has been for years. Sometimes he has difficulty pulling up a word that he needs or replacing a correct word with a similar one. The little things lost, bits and pieces of a life here and there, swept away by a truly terrible disease. It is all scary but manageable right now, but we both worry about what the future may bring. We are a team and- as we have always done during our almost 20 years together- we have each other’s backs, no matter what. We balance each other out with our strengths and weaknesses. Where one falters, the other steps in to fill the gap as best we can. We will get through all of this in the most loving way possible. That bond we share is unbreakable.

Bedtime for sweet Marley and our new family member, Gracie. More on our new wild child soon.

We went to hear a recital of two of my friends and colleagues at school this afternoon. It was a vocal recital and my friend has a gorgeous and rich baritone voice. The last piece made me tear up, as it was about how quickly time passes. As I sat in the recital hall next to my precious husband, holding his hand and taking in the beauty of the music, my heart felt heavy. I think it is grief for what may happen, Perhaps beginning the long process of steeling myself. Mostly, it is grief for my husband, a man who quietly does so much good in the world, who has a huge heart filled with compassion and empathy for others. He is exactly perfect for me, as sappy as that sounds. I don’t want to lose any part of him and will fight next to him to search for help.

And so it begins. One baby step at a time to find our way through this maze- and we will.

Early bloomers at Chez Gainey. A sign of hope.

5 thoughts on “On the Little Things Lost

  1. My condolences to you. I hear you. My mom has Alzheimer’s, and I spent much of last year in grief. It is an odd feeling when the person you love is still alive, yet the person they were, during much of your life together, isn’t who they are currently. It doesn’t sound like that is currently your experience–but I hear and understand the grief at the little losses. I’m so grateful to be able to read what you have to share, and I hope that you feel some warmth and connection by writing it. Whatever you feel is OK and is part of the process, and you and Dan both do so much good every single day!

    Also, the practical side of me wants to encourage support–little things like having someone to help out with errands or house-keeping or fixing stuff, and big things like support groups can go a long way to help you continue to be able to show up during this especially challenging time.

  2. Get some support, if you haven’t already. I’ve a friend (father of a prized former student) who os going through this journey with his Mother). Check out Mark Applegate’s digitalcornbread.com
    He has wonderful posts!

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