Chapter 2: Musings on Memory

Chapter 2: “Musings On Memory” (written throughout 2017)

 It feels like so much has changed in a year, in a week, in a moment. Yet, the pain and uncertainty of the experience of Alzheimer's can feel like Groundhog's Day. 

It has been over a year since my writing, "The Beauty of Heartache." Nothing has changed and yet it seems everything has changed. During 2017, I spent many a weekend traveling back and forth to Rochester, NY. The visits to see my parents were wonderfully connected and brutally painful and everything in between. 

Grief. Not for the faint of heart. Keeping my grief company, I write. Allowing grief to keep moving through me, I weep. Learning more about my grief, I dance. Deepening my experience of grief, I listen to music. All of this allows for more space inside.

May, 2017 ~ My mom and I are sitting outside and she shares, "I don't know what happened during that surgery (her heart surgery two years ago), but I think they gave me too much anesthesia. I really don't remember much about a lot of things. I don't remember when my girls were young and in school. Sometimes I don't even know my own name." I validate my mom's belief that it might have been the anesthesia. I also share, "Mom, you have Alzheimer's that is just awful and unfair and it impacts your ability to remember things." She nods. Does she understand? Does she know what is happening to her? 

I invite her to help me with simple tasks, seeing that when she feels useful she is more engaged in the world. I watch her fold clothes and she looks like a small child learning a skill for the first time. How many t-shirts has she folded in her lifetime? How strange that it looks like this is her first. I ask her to help me put salad dressing away and she looks eager, like a little elf, happy to be helpful. It breaks my heart to watch her folding, unfolding, refolding. She rips tissues and napkins constantly. To me, it is maddening. Yet I wonder if it calms her, or perhaps it gives her hands something to do. People tell me that it's common. I want to ask her. I can't ask her. I witness and wonder.

Everyone who suffers with Alzheimer's is different. Since my mother's diagnosis five years ago (we all believe this goes back much further), she has become kinder, sweeter...and oh, that has been wonderful. What I am learning is to be in the simple, sweet, heart-aching moments with her. 

July, 2017 ~ The fireworks begin to explode in the night sky. My husband, father and nephew run outside like three excited kids. This is a quiet moment where I can be alone with my mom. These moments are rare. We look at the family wedding photos on the wall. Her wedding photo, her mother's wedding photo, her grandmother's wedding photo, Joy's, Tina's and my wedding photos. She tells me how much she likes the wedding photo of me, getting me confused with one of my sisters. "That's OK." I say. I guide her to the photo next to it. She looks confused, vacant, empty. I watch her look at the photos and then she softens, looking like she is feeling such love for her three children. Even though this is one of those exquisitely painful moments where perhaps she doesn't know me, I smile. This sweet moment is one of those that comes between all the moments of madness. Those painful moments where she is looking at everything and nothing at all. But then we have a moment together like this and it feels like a gift. It's a gift of love, compassion during this awful disease. We talk about how much she has forgotten. I tell her that I will always remember. I tell her that when she was there in her life, in those moments in real time, she was truly there. It is a moment of true connection during this time of Alzheimer's. What an incredible paradox. 

There is a big difference between long-distance running and sprinting. I was never a runner, but in middle school I was better at the 50-yard dash than the long distance races. Get in and get out. I've noticed that "sprinting" is a way of managing my feelings. I sweep into town and do a whole bunch of things for my parents in a 36-hour stretch of time. The problem with this is that I then need serious recovery time because let's face it, my entire being doesn't feel good sprinting. After one of my visits, I am able to hear my husband in a different way as he gently encourages me to move a bit more towards the middle and slow down a little. This isn't easy for me. I want to run fast, skating on the surface of Alzheimer's. I am in high gear, dancing as fast as I can. I know this is unsustainable and I am learning to slow my pace, so that I can pay attention, listen and help. And be. 

Through each and every conversation, each and every article I read, I am learning. I am learning how to appreciate my parents in ways I never have before.

September, 2017 ~ Reflecting on my first piece of writing, I let my tears fall. A year has passed. It feels as if my weeping is now deeper, darker and yet at the same time, more loving, less desperate. Sometimes, it can feel like a tsunami. Sometimes, like a steady, gentle rain. Like Mother Nature, it changes all the time. 

October, 2017 ~ After cutting my mother's hair, I come up with another crafty way of inviting her into the bathroom so that I can help her bathe. She lets me do things that I never imagined I would be doing. As a team, we do a pretty good job. However, it is becoming clear - my mom is no longer able to care for herself. She slumps, puts her head in her hands and cries. This is rare. I am down on the floor next to her, I holding her hand, encouraging her tears. Wringing her hands, she asks "God, why? Why? Why me?" As soon as she questions God, she takes it back, fearing this will make him angry. Gently, I say, "I think God understands that you ask why, that you are angry, that you are confused, that you are shaking a fist up to the sky wondering 'why me'?" Her breathing eases although she quickly scurries away, "Oh well, it could certainly be a lot worse." I hope I am helping her by honoring how she feels, even if these moments do not last long. Later, I say to my father, "We are doing the right thing, researching care facilities. She needs more care than we are able to give her. You have been a rockstar, dad. This is too much for any one person to be handling alone." He agrees, which is a very loud statement of his own exhaustion, resignation and exasperation.

Typically, when it's time for me to leave, I get funnier, quicker, gotta go gotta go! At the end of this visit, I say to them that I am feeling really sad to go. My mother begins to cry, wishing I didn't live so far away. My entire life, I was so relieved to live far away from my mother. I did not want to be near her, I did not want her involvement in my life, I did not want her company, I did not want connection with her. Now I wish it was easier to spend an afternoon with her like we did yesterday. We went for a very slow stroll, walking down the street. We sat for a bit on a bench. Looking around, she pointed out trees she thought were pretty and commented on the beauty of the flowers. She talked about how lovely the neighborhood was and I am not sure she knew this was her neighborhood. A few minutes later we were back inside. She mentioned how nice it was to be visiting me at my house. These moments happen more frequently now.

My father is tired. My father is at a loss. My father is going through the motions. It is so wonderful to be with my father for a stretch of time to see him come back to life through laughter and stories and moments of sharing a glass of wine or a cold beer. I don't know how anyone prepares to live alone after 61 years of marriage. He seems to be getting ready. I dread the day that we have to take her to live somewhere else and quite frankly that is too painful for me to even contemplate right now.  

November, 2017 ~ I am awakened by my mom. I hear my bedroom door open and my mother slowly walks in. I can tell she not only has no memory of me being there but she does not know what room she is walking into. Truth be told, I want to scream and tell her to snap out of it! I am afraid. I take a deep breath and say, "...come in anytime mom and find me and we can talk and you can have a moment of remembering that I'm here with you." It feels to me like a Benjamin Button moment. She seems younger and younger as she gets older and older.

January, 2018 ~ I feel I am at war with myself. I am doing everything I can to convince myself that my mother is more stable and present than she really is. She's not ready, I'm not ready, it's not time for a skilled nursing facility. Now that I've seen places like that and the people there, it is SO CLEAR she does not fit in. But then I look at her. I really look and carefully watch. A part of me knows. I imagine her at a nursing home and I can barely breathe. Yet I know it is time and that we are on our way sooner rather than later. 

It is quite poignant that I am at war with myself while my mother has been waging a different battle of her own. As my parents and I do Ageless Grace together, she comes to life, "I know it will help my brain." Perhaps it will, however, what she wants is a miracle. She wants her memories. She prays harder than she has ever prayed, if that is even possible. 

Every time I see her, she is further down the line of being lost in some world that is uniquely hers. I do my best to keep her company there. She lets me. She tells me she will be ok, "as long as I have you." I am a blessed guest in her alternate universe. I look deeply into her eyes now, something I have never truly done. I hold her hand. I cannot believe how deep this pain is. Sometimes the pool of tears feels like it has no bottom, although I know it's there somewhere. I keep crying. I keep writing. I want to be in the world in a way that makes me proud, that pays homage to her. 

Music saves me. I hear Seal's "Fast Changes," Oleta Adams' "Everything Must Change," Lauren Kennedy's "Letting It Go." The song that pierces my heart on this particular drive is from "Dear Evan Hansen - You Will Be Found"

Have you ever felt like nobody was there? 

Have you ever felt forgotten in the middle of nowhere? 

Have you ever felt like you could disappear? 

Like you could fall, and no one would hear? 

Oh, someone will come running, and I know they'll take you home. 

Even when the dark comes crashing through. 

When you need a friend to carry you.

And when you're broken on the ground, you will be found. 

So let the sun come streaming in. 

'Cause you'll reach up and you'll rise again. 

Lift your head and look around. 

You will be found.

It was one of those moments. I smile through the tears, I look up to the sky and out loud in my car I say, "Got it. Thank you, I hear you."

It's time for me to go back home. We hug. My mother clings to me in a way that feels different. I hold her close as she cries, and I notice how different this feels from the days, the years of me desperately wanting to push her away. 

A stunning piece of music comes into my mind, "In the arms of the mother...the great Adriatic mother...in the arms of the mother, I lay down..." 

Primal. 

Endless. 

Forever. 

I want to stop time. I want to bend time. I want to lay in her arms and have her be strong enough to hold me. Yet I know in this reality, I will hold her and help her find her way home. 

And so it goes...

It's February of 2018 ~ We have just begun "Chapter Three." As of last week, mom is living in a skilled nursing facility. 

I do not know what this chapter will be called. I do not know how this chapter will feel. 

And so it goes...