Tethered Thoughts

I’ve been in a caregiving headspace about my mom for two years now. I’ve sifted through the literal remains from her life and distilled a three bedroom townhome into a 600 square-foot room. I still have some of her old papers and photos in boxes in my office. 

Her presence is still very much with me. The person she was haunts me and the person she’s devolved into panders to my emotions. I am a dutiful daughter; she raised me that way. At times even now, two years into a dementia diagnosis, I still think she might be manipulating me. Is it wishful thinking? Have I become so accustomed to her abuse that I long for it now as a way to deal with her disappearing brain? 

I have even begun to grieve her, though she’s still alive. Perhaps it is a gift to be able to walk upon this journey with her – perhaps it is one I give myself as a salve for the mental scars I carry. 

Still, there are days when I humbly acknowledge how hard it is to be a mother, and I am taken by the amount of love and anticipation I have for my children. I’m sure she was the same way, even if she didn’t express it in a way I could relate to well.

Her birthday is this Friday, she will be 84. I feel compelled to bring her balloons. I might have to remind her what they are called, but perhaps not because she always love balloons. It drove me crazy how compelled she was to bring my girls balloons on their birthday. When you have kids, a stale balloon can bumble around your house for weeks under the dawdling security of a toddler. This week the idea lightens me. A dollop for floating hope in an otherwise hopeless situation. 

Reframing

How lucky I am to have time to visit my mother and observe the crazy changes she is going through as a result of dementia. It is a non-cohesive mess she is in. Engaging with her seems like a duty but also like a min-adventure. I have no clue where she will take me - certainly no place she has gone before.

Spiraling Through Time

My 83-year-old mother told me she didn’t feel 83, she felt younger. She said this from the comfort of her recliner spread back, not having moved for a while, her walker nearby. She said it from the comfort of her dementia too. It seemed a moment of clarity in an otherwise nonsensical conversation that had me laughing and falling down rabbit holes to catch facts and distill what I could from her memories. She rarely shared them while I was growing up and so now, though they aren’t 100% true, I still feel compelled to follow them and knit the truth from their pieces.

I am 46 now; I don’t feel 46 either. My mother tells me I look good, perhaps it’s because I just got my haircut. I am not happy with how my body looks. I’m getting old but in her quiet room on the fifth floor of this assisted-living facility, I feel my youth and vigor, my ability to pop up and walk across the room, to Google photos of her childhood boarding school in New York, to write her a note to leave on the table for her to find later so she does not feel so alone when the night sets in. 

I visit my childhood quite often in memories. I am reminded of moments in the presence of my eight-year-old who walks around like a hologram of me when I was young. It is a gift to be with her and to view myself from a parental vantage point since I no longer have my parents to give me perspective. Time is as contrived as all the other systems we have been indoctrinated into. We are caged by this framework since the day we were born rather than freed to flourish throughout it's entire spectrum. 

I do not feel old but my body is slowing down and the waxing of years has built up faster than I anticipated. Yet in a heart beat, I can jump back to learning how to ride a bike, to my first place in college, to being pregnant and moving in to our home. I watch my mother jump around in her experiences too. Her neurons misfiring and jumbling the facts, making a relative a brother she never had, handing me names I’ve never heard. Somehow though it’s soothes her; even when I have to break the news that my grandmother is no longer alive or that my dad has been dead for 11 years. Often I derail her plans to move to Florida with him or to choose to stay in Colorado while he moves, which makes more sense because they were unhappily married and divorced for more than 15 years before he kicked it. We never talk about the divorce. 

I watch her feel her way through this web of thoughts, get disappointed about the deaths, and then asked to go shopping all in one or two minutes. I know the real treat is that I am just sitting with her, listening to her, and relieving the loneliness and confusion that sets in when she is left to her own devices. I see her struggle to escape the confusion by falling into old patterns of what she would do as a homemaker. She tells me she needs to go grocery shopping, to the bank, and to get light socks because the heavy ones are too much on her feet now that it is getting warm. She tells me her feet sweat, she tells me things she would never have revealed to me as my caregiver, as a woman bread in the '50s with the expectations of that generation. 

I remember how she would cobble six fruit cocktails together as dessert in thick glass cups with stems that felt fancy and fun as a child. I tell my kids about this, about the things she would do that seemed delightfully odd and now almost mythical because that person is slowly disappearing and they see how nonsensical she has become. I tell them because they would have loved it, because she still believes she can watch them for a night and spoil them the way she wants to while she gives Andy and I a break. I find myself making Shirley Temples in wine glasses for them because that’s something she would’ve done. The Gen X parent in me worried I’m indoctrinating them into drinking while the caregiver in me appreciates the lightness of something familiar from the happy moments of my youth. I too am still a nine-year-old longing to be fancy and I have a real wine glass with a fun drink to cheers and clink like an adult.

I look at my girls as little people. Perhaps I am too candid with them about life and death, about things I should hold off on explaining until they’re older. Then I imagine their trajectory, about how fast life flows and how I can’t control the moments they will find their way back to when they time travel. I remember how their entrance into my life saved me in many ways but mostly from myself, mostly from my desires to not care. I admit how quickly this journey we are on will pass. Each step feeling whole and true right now but it will be no time at all before we are looking back at all of this "so long ago" and seemingly only yesterday.

My mom is spiraling along this wheel too and time has been tossed away as irrelevant. As I sit with her sometimes she can’t quantify my age, so I am simultaneously a teen and an adult with a husband and two kids. To be honest, I find it refreshing and true now that I am no longer disturbed by the lack of sense. Aren’t we all different versions of ourselves at any given moment - pulling from every phase and experience we have lived over the years? All those moments remain in our being whether as part of the trunk of our existence holding us up or as flowers that have bloomed from something so powerful it made us become.

In this moment I am walking my mother home. Each day she moves slower, she’s practically in a wheelchair. She has moments of clarity and frustration, embarrassment, and moments where she grasps to recall the woman she was. She still feels compelled to her duty as a matriarch, to the story she told herself about her marriage, to the society she lived in so long ago. Now she stares out the window, wandering her memories, aching to control the lost words or make sense of what once seemed so easy.

I cannot figure out why she won’t let go or admit she wants to let go. At the same time, I admire her compulsion to mother us still, mother us always, to not leave in case we need her help. This is what I like to believe in to make sense of this ending because otherwise I get frustrated and angry at the slow progression of her exit.

The Horizon

It is time. The edges of the day are frayed and my curves have grown brittle. I am going stiff where life once flourished. You can see the lines from afar. My breath grows more shallow, my oceans less deep. The mysteries of my existence are either being fully unveiled or or will be lost completely. I cannot give any more. I have a little left and there are a few left to care. I have learned to let go of the beauty I once crafted so delicately. Life was a dance and now I can barely shuffle my feet. I am in for the deep good night. I am ready to lay dormant. I no longer crave to unfurl, I crave to recover.

Perhaps each being comes into their existence as a beautiful flower only to experience disintegration across a lifetime. Decomposition starts long before dying. We fall apart long before we truly see any signs. Then it becomes too late: we are captured, entangled, getting eaten away slowly. Until we too are shuffling towards death's door; until we too fear the brittle sensitivities of a body that can no longer stand the gravity that comes with the force of living. Slowly we slow down until moving becomes too much. It can take a lot of time for the breath of life to leave at space. Once it’s gone, only stardust remains, mingling with the universe until the energy dissipates completely.

How does the Earth die? It’s not in one final quick flash. We all want it to be that way but death is rarely quick and clean. Rather it comes slowly across the horizon; steady in movements but working at its own speed. It is a cowboy, an illusion disappearing and reappearing along the prairie. We fear its approach, crave its absence and can’t stop watching it. Surely though it is coming and the approach is nothing predictable. Should we make ourselves comfortable or prepare to fight?