90 Minutes of Gratitude

I’ve had the incredible privilege of being a part of an online caregivers’ support group for the last few months. We meet every other week for 90 minutes. 90 minutes. It doesn’t sound like enough time for twenty-five or so folks who are on a seemingly endless roller coaster of unpredictable intense emotions. But after those 90 minutes, sharing our stories, listening to one another’s latest storm burst of challenges, the words we echo at our closing minutes are: connected, relieved, hopeful, grateful.

For those 90 minutes, the narrow walls of isolation fall away, and we can look into one another’s eyes, (well, it’s on zoom, so who knows if we actually can tell, but dammit, it’s close enough) and feel soothed, lifted, our shoulders dropping away from our ears. Tears are welcome. And boy do they flow on some nights. One of us shares something that hits hard right into my pumping heart. It’s easy to sit in the space of comparison; wow, that person contends with a huge shit storm every day, I only have one a week, and it’s not that bad. But we’re all in the midst of this weaving wild caregiving adventure, which can be immensely frustrating, sometimes immeasurably sad, seemingly never-ending, and yes, so often, very isolating. But, we come together, our energies across the internet can buoy one another, with our breath, our words, our commonality, the diminished light in our eyes brightening.

Most folks are dealing with a partner, a parent, a friend, living with dementia, or Parkinson’s, or for fuck’s sake – both. I recently shared that sometimes, out of nowhere, I’ll just sob. I’ll be out on an afternoon walk, a cool breeze will flow around me, a Bluejay will generously share his ear-piercing screech, and all of sudden I’ll miss my Dad so damn much. That he’s been gone for three years is a foggy freaky reality. Or let out the heaviness of watching my Mom fade away slowly, so damn conflicted because I’m wishing that it would end. And knowing it ends with her death. But, in my heart, I know she would be so pissed off if she knew she was dragging on like this. I miss my Mom. The Mom that was so independent, and community driven, involved in so many things, and also, adamant that my brother and I live our purpose, contribute our gifts to our communities. And always so damn proud of us, even if we just remembered to floss.

We all take one more look at one another around the zoom room. Pop heart emojis in the corner of our little boxes, unmute ourselves, or mute ourselves if we forgot to unmute, so guilty of that, and throw some love at everyone before we click on “leave meeting.” 90 minutes. Gone. But I’m held by the group’s energy for the next few days. And it helps me be present for myself, my utterly wonderful spouse, my art, my work, my world.

I will see Mom tomorrow. She’ll be in her recliner. Her eyes closed. When I cross the kitchen and say “Hi Mom” her eyes will slowly open, and she’ll smile. “I’m just resting,” she’ll say. “Just being lazy.” Her default saying the last couple of years. She’s never been lazy a day in her life. Yet, her life, right this moment, is the disease talking. Shutup, Ahlzeimer’s, I’m here now. Mom and I are going to take charge for the next hour or so. You can recede, into a place where you feel isolated, alone, trapped, and forgotten. I know you won’t stay there very long, but please, for now, just do it. I love you, Mom.

What do we need?

Mom has been dozing most of the time my last few visits. Is this the new phase? Is this how it’s going to go? Or just a blip in a longer journey of Alzheimer’s and aging? I don’t put money down on any of it. Each day is as it is. What I notice in myself while her body and mind rest, my body and mind need to move. They get stirred up. The struggle with myself to just be. To sit with her, even as she sleeps. The spending of time with her, the beats within the moment. But my upbringing, and yes, I’ll credit my folks for this, is that when things get in the emotional weeds, you get busy. Do the busy stuff. Keep things in check. Today, I had to replant some of Mom’s plants in new soil. as we had some nuisance bugs buzzing around. Digging the trowel in the dirt, pulling up the roots, putting the plants in new soil, as it thundered and poured outside, gave me something to keep me busy as Mom snoozed. Only waking a bit when I made a noise. She’d smile then close her eyes again. Breaking a sweat as I carried the trash downstairs. Keep moving. Don’t think too much. Don’t acknowledge that this is hard to witness. Even if it’s staring me right in the face.

What if I just sat while she slept? Just, sat. Read The Boston Globe. Just shared the same air with her. Looked at her resting face. Soon, we’ll be adjusting our visiting time to a bit earlier due to staffing system change at the senior community where she lives. Will she be more awake if we arrive an hour earlier? I struggle with wanting her to have as much quality of life as she is capable of, and also not wanting this diminished existence to drag on. Her Mom, my Nana, lived to be 105. We’ve joked that she better not even think of trying that. And I do know, Mom sure wouldn’t want that.

I know my Mom comprehends to some extent that her brain isn’t working very well anymore. And I know she would not want to live a purposeless life after the life full of purpose that she had. I can only give her my best, my presence, my energy, when I visit. And hope that it makes a difference in her day. She was so good with her Mom when she was living into her century plus life. She took such good care of her, made sure she had everything she needed. Spoke up when something wasn’t right. I hope I’m doing that. I hope I’m bringing my best self to all that Mom needs.

I just need this to not last for years. Especially after losing Dad to the same disease in 2021. I know the road we are on, it only goes in one direction. I just hope I have enough in the tank to give Mom the dignity and grace she deserves, while not neglecting or sabotaging all that brings me purpose and joy in my life. I have art to create, writing that calls me, creative energy that needs to thrive. I know damn well she’d be pissed if she thought I was too focused on her needs to do my purpose. My life also only goes in one direction. I want to be present for all of it. Not thrust myself into the distraction of keeping busy, so that the emotions of the moment stay deeply rooted. I need to stay still long enough to truly be with my Mom. To truly be with myself. To breathe in to my body and let whatever I feel be. Even if it freaking hurts. Even if it freaking hurts.

I love you, Mom.

Celebrating Mom

Mom turns 88 today. Though last night when I called, she said, “We don’t have to count forward do we?” I said, “Of course not, pick a number!” I call Mom almost every night. It became a nightly ritual after Dad died in 2021. To be a moment of connection. And since Mom’s Alzheimer’s impacts her short term memory, it’s the present moment that counts. Because after it’s over, and I hang up the phone, or leave after a visit, the clock ticks as to how long she’ll remember that moment we shared.

I can usually predict what she’ll say to the word each time I call. “I’m fine. Just sitting here watching TV. Just being lazy. Not accomplishing much I’m afraid. But I’m we’ll taken care of.” It’s the words “lazy”, “not accomplishing much” that always punch my heart. And I struggle to offer another angle, another way to acknowledge where she is in her life, with a granular sprinkling of dignity and truth telling. Alzheimer’s has robbed her of her ability to contribute to the communities she was instrumental in building and holding. It’s robbed her of her purpose.

Mom is one of the most accomplished people I know. After the election of Maura Healey as Governor, Kim Driscoll and Lt. Governor, and Andrea Campbell as Attorney General, I’ve been basking in the knowledge that it was the contributions and trailblazing of my Mom, and many women alongside her, that most likely set the stage for this historic moment.

Mom graduated from Northeastern Law School when I was ten years old. She was leading the local chapter of the League of Women voters during most of my childhood and beyond. She was involved in town government for years, and she ran for town selectman when I was in college. Like Hillary Clinton, she was the most qualified for the job, but lost to a younger man who had ambitions beyond town government and was using it as a stepping stone. But she took it with grace, and kept working. She was appointed Chief of The Bureau of Local Assessment in the MA Department of Revenue, because no one would take the job because it involved updating and restructuring the tax codes in all cities and towns in the Commonwealth. That’s all 351 cities and towns. But because Mom is Mom, a collaborator, a good listener, and very savvy and methodical, she navigated her way in probably many more than 351 conversations with local assessors, mostly older white men, and got the job done. It probably didn’t hurt that she wore a pair of stylish zip up knee high badass boots that exuded confidence and that she was to be taken seriously. The work she did helped create equitable taxation standards across the Commonwealth that I believe are still in effect today. Quite literally, groundbreaking.

I could go on and on about her accomplishments. Truly. I want to her to know and feel all that she is done to make this world a better place for women, for me, as an lgbtq+ human, for everyone, simply because she lived her purpose. She showed up and did the work. With grace, humor, generosity, diplomacy, and love. And made space for women coming after her to push for more. Which means everyone benefits. Mom reminds me to never underestimate the impact one person can make. And how important it is to live your purpose, and to contribute and participate in your local communities.

Happy Birthday to my Mom. You deserve to live each day with dignity and a sense of accomplishment and joy. That’s an integral part of my purpose now, to bring that essence to the moments we share, while we can.

Lefty

Today, Saturday, August 13th, is International Left Handers’ Day. It’s also my Dad’s birthday. He died a little over a year ago. Today, he would’ve been 91. I don’t know the origin of this story, but I heard that Dad was born left handed. But because he was born in 1931, and his parents were strict Lutherans, being left handed was seen as sinful, a sign of the devil. He had to learn to write right handed. I always loved my Dad’s handwriting – taut, specific, with a controlled flow, and the subtle flair echoing his life as a scientist-engineer. His signature, first name Charles, the C ended with a little curved tail on the bottom. My Dad’s last few years, navigating the adventures of Alzheimer’s, were full of many challenges, but he never lost his curiosity, his life long scientist-engineer inquisitive nature in seeing the world. But when his handwriting started to falter, that signature became a different sputtering animal.

I was born left handed. I’ve always felt lucky be left handed. Growing up, it felt pretty cool. ( I also know there were times I was pissed when all the scissors in school were made for right handers!) But, I credit my early creative sparks as a human, due to being left handed.

I also wonder how my Dad’s early life would’ve been if he had been allowed, supported, celebrated for being left handed. To not have to spend time, energy, working against what was a natural gift. What it felt like to be told that something that was innate to his being, was evil. My Dad was incredibly intelligent, his brain worked in a way that most of my young life, I struggled to understand what plane of existence he was thinking on. He had a wicked dry sense of humor too. It was only later, the last couple of decades of his life that we could be very curious together about things we both loved – the magical mysteries of the natural world. We had many conversations about whales, birds, trees, wind. Now, whenever I see a hawk soaring above, it’s a moment to connect with my Dad.

When I came out to my parents in my 20’s, they were my biggest champions. What a an incredible privilege it has been to always have their support. To not have been told that a natural integral part of who I was, was evil. And being left handed was undeniably seen as a gift, it made me me. And having my parents say that out loud, made a huge difference. Being queer, and saying that out loud, and being loved for who I am, has been life altering. I know many queer folx, trans folx, didn’t and too many still don’t get that unconditional support and love from family that should be a given, the true definition of family.

Today is International Left Handers’ Day. I celebrate all those Lefties out there. And I celebrate my Dad, who may not have had the chance to embrace his left handed self, but lived an amazing life and loved me for me.

Eulogy for Dad

6/26/21

Alzheimer’s robbed my dad of many things in the last few years of his life. 

But it couldn’t touch his persistent endless curiosity, his sense of humor, his ability to crack himself up, and his extraordinary love for Mom and us. And one of the most profound things that I experienced with Dad in these last couple of years, was the ability to connect in the moment over something as simple as our reflection in the dark screen of the TV- how fun it was waving our arms and laughing, watching ourselves play together.

Dad held a deep respect for the wisdom of nature. That humans were far from the only sentient intelligent beings on earth, and that our selfish actions as humans often ignored this. 

He bought a Prius as soon as they became available. He bought stock in wind and solar power when financial advisors scratched their heads. He spent hours ensuring that the solar powered lights pointing at the sign at the Old Ship Church parish house were at the appropriate brightness.

Our yard had over a dozen varieties of rhododendron, and a robust yucca plant. 

He did all of these things in his quiet understated way, but with radiating determined conviction.

Even in his last few months, he would be deep inside his mind, explaining some complex scientific problem, as we wheeled him down the many corridors to a doctor’s appointment. I would listen intently knowing that this thought maybe lost after today.

Our presence together in the last few months, brought out stories I’ve never heard, the design elements of his first sailboat, sledding down haytstacks as a kid during winters on the farm, all of them I now cherish, all of them giving me a deeper glimpse of Dad. A kind and loving Dad. A patient Dad. A brilliant Dad. My Dad.

A Graceful Exit

A Graceful Exit

I want to accept these changes with grace. Mom and Dad would wish for it, these days. My heart wants that. The path to grace, though. That’s where I’m going to fuck up. Occasionally lose my shit.

Loss. The loss of Dad. The loss of Mom. In increments. Each day. As their disease shifts in their brains. As it moves about. Making an aimless mess of things. A little loss each day. Subtle. Sometimes profound. A leap forward into darkness.

We had to move Dad to the nursing facility this week. Rose Court. The Shady Pines of my existence. If only Sophia Petrillo was in the room across the hall, not the man who calls out “Help me!” every few minutes.

Mom can see Rose Court from the window. Across the parking lot from their apartment. It might as well be on another plane. She doesn’t understand that he’s not coming back. Her Alzheimer’s is either protecting her from the heart ripping pain of that reality, or every time she asks when he’s coming home, she’s trying to reach closer to an inner strength she knows is there.

I’m barely able to comprehend this new change myself. The depth of sadness comes in abrupt waves. I put sticky notes on the walls of my Dad’s “new room” where pictures will get mounted. A framed photo of Dad, standing on the dock, in a ball cap, button down shirt, khakis, admiring his sailboat, moored securely a few feet away. A warm folk art painting of a Humpback whale and calf. It had been leaning against the wall in the no longer used office of their apartment. These pictures. More for staff to understand Dad as a human, than for Dad to feel a familiar comfort. At this point, we’re beyond Dad knowing how to navigate in any realm but that of the dimming light within him. He barely opens his eyes as we visit.

I want to accept these changes with grace. Life and death and all that is in between are just passing moments. My desperate quest to tap into the Pema Chodron mindset of groundlessness. “You are the sky. Everything else -it’s just the weather.” Yeah, but I grew up in New England. The weather is everything.

I want Dad to leave his amazing life with grace, with peace, with a beautiful smile on his face as he takes his last breath. As if in his mind, he’s holding the tiller as his sailboat bounces on the waves, sails full, with a warm summer wind across the bow.

I want the same exit for Mom. Although, I’m pretty sure the sailboat scenario would not be first on the list. For her, it might be standing behind a podium, lecturing about the importance of local property tax assessment. For real. With a big smile on her face.

I realize this exit plan is a lot to hope for. I realize we may not get anything close to that hope.

I can aspire to grace. I can damn try. But if whatever exists, (and I’m not convinced of anything other than the LOVE we bring to each moment), that is greater than ourselves, lets Dad and Mom linger in this frightening fog. I’m going stumble. Fall. A lot. And take my damn time getting back up. And try to give myself some grace too.

Accepting these changes with Mom and Dad. Accepting that death is nearby. Hovering.