Gratitude

This one’s for my sister.


Every inch of my body screamed, "I can't do this again. I need to leave. I can’t handle One. More. Moment.” I felt agitation running through my veins, anxiety rising in my chest. Resentment and anger came bubbling up as I thought of all the families sitting down to their Thanksgiving dinners while I found myself in a room alone with my mom, inside of the assisted living facility we had moved her into two weeks prior. She was downright refusing to get dressed and come with me to join the rest of our family for the meal. Or maybe it was her disease, the PCA, that was refusing to come.

I took a step back and tried to breathe to stop myself from yelling. I wanted to yell all the time, at anything and anyone. At the squirrels who got in my way on the sidewalk, at the aide who should’ve had my mom dressed already, at my kids to put their shoes on. In that moment I wanted to yell at my mom. Then my sister, Dani. “It isn’t fair that you get healthy grandparents”, I would scream. “You get to leave for the holiday and go on date nights with free babysitters and have someone cook for you while here I am, stuck in this room.”

The thing was, I really couldn’t convince my mom to come with me. While I was seeing red inside of my reptilian fight or flight brain, I knew enough to know that I was not mentally in a place where I was going to be able to connect with my mom, get on her level, empathize. Get her dressed so I could be with the rest of my family who were already together, waiting on us. So I called Dani.

Isn’t this what we do as siblings? I would do this to no one else on earth (well, except maybe my husband - sorry babe). I’m so resentful in this moment, I’m letting my emotions get the best of me by attacking my sister in my mind, I know she already feels horribly guilty about leaving me alone to deal with the situation, and I decide to call her?

And, you know what? She answered.

Thinking back on it now, I have tears in my eyes. Tears of deep gratitude for Dani. Put yourself in her shoes for a moment. After months of crisis, I mean crisis every damn day for weeks on end where you are pulled from meetings at work and bedtime with the kids to take care of our mom. Off to the neurologist, the psychiatrist, the ENT. Off to the emergency room. Off to a meeting you’ve been called to with the director of the facility. It is only us. Her and I. We moved her here away from her village and so it is us and only us who are responsible. Dani has finally gotten an opportunity to take a moment to breathe. A few days where she can be with her two little kids and focus on them with her full attention because she knows that even if she gets called she can’t physically come. It’s a huge weight lifted for a few precious days. And I evidently wanted to sabotage it for her.

Not only did she answer the phone, but she answered it free of hostility, even though she had to know it was an SOS call from me before she picked up. We had been answering each other’s calls with, “What happened?” for the past two months. But on Thanksgiving she sounded happy and peaceful when she said hello. Immediately upon hearing her voice I started to relax. I put her on speaker and she spoke to our mom in the way that I wasn’t able. She soothed and listened and comforted. After we hung up, I got mom dressed and off we went. 

For years people have told me, “It’s good that you have your sister.” For a long time, I wanted to respond by saying that having a sister doesn’t make the pain go away, you know. It’s still the hardest thing I’ve ever faced. “You’re reminding me of my sister because you want to create distance between yourself and this hardship I’m in; it’s easier to sugarcoat it with my sister rather than acknowledge the pain, isn’t it?” I wanted to say.

This year though, a deeper level of gratitude than I have ever felt before, came into my life. We have walked through the hardest days together, Dani and I. Facing the depth of this disease together, the stripping away of the woman we both love dearly has bound us together in the most beautiful way. We have chosen, time and again, not to scream at each other. Not to take our pain out on each other. But to support. To be the other person’s person. To love.

Now when people tell me how lucky I am to have my sister I close my eyes and say a prayer. Thank you for Dani. Please keep her safe. Please protect her energy and bring her peace.

The Messy of "And"

I think and write a lot about living in the “and” of life. That’s the place where seemingly conflicting or contradictory feelings arise and the idea is to allow them both. Just because a feeling feels icky or maybe not what you “should” be feeling, you still allow it to be there and co-exist with your other feelings. I think we often stuff our feelings so quickly that we might not even notice them. We were told as kids, “It’s not scary” or “Stop crying, there’s nothing to be upset about” or “Everything is fine” and we ingest this for life.

My version of embracing “and” is about acknowledging and allowing the feeling. I think this is one of the paths to personal growth. I need some teachers along the way because this stuff is hard. I love to listen to Megan Hale’s version of this on her Wild & Holy podcast. Episode 12: The Underbelly of Expansion was all about how parts of us contract in the middle of expansion.

You know I always use myself as the guinea pig when I’m trying to figure something out, so I am going to use a recent anecdote to illustrate.

Back to School Night happened recently. The day of, I worked at my genetic counseling job, ran to the parking garage at 3:30pm, had my usual two hour long commute home, picked the kids up at their after care, brought my daughter over to gymnastics and then found myself in my kitchen with my husband and son. It was time to go to school for the event, but all I wanted was to sit down with them and rest. Going to school events can be challenging for me. No matter. I left with 10 minutes before the start of the session I was attending, plenty of time given the school is one mile away. Except I forgot about parking at school events. You would think we lived in Times Square. I parked about five blocks away, got out in my heels and started running. My good girl reflex kicked in and I didn’t want to make a bad impression on the teacher that might reflect poorly on my kid.

By the time I got the classroom I was dripping sweat and panting. Great first introduction. The teacher was lovely and calm, which eased my stress and I was feeling good by the time I pulled into the driveway back at home 90 minutes later.

Then my phone rang. I looked at it and saw the name of one of my mom’s caregivers. My stomach dropped, quick and hard. A very big part of my wanted to throw the phone into my bag and stride into the house to start the bedtime routine with my family, ignoring the call. Having been on the receiving end of these phone calls for the eight years since my mom’s diagnosis of a rare dementia, I have a strong hit of intuition when something is wrong. I just knew that answering the phone would lead to more action that evening. I didn’t want more action.

Let me pull apart here some of what I was feeling right in this moment:

Utterly exhausted from this marathon day and stimulated from a big shot of adrenaline knowing something has occurred with my mom.

Shameful that I wanted to ignore the call and proud that I can handle these moments of extreme stress.

Gratitude for having helpers that lovingly take care of my mom and resentment towards this disease that has taken over our lives.

I could go on. I think it’s so helpful to acknowledge and, as I’ve done here, write these feelings down. I don’t feel any shame now about these feelings. Processing them in this way is so helpful to me.

I did pick up the phone. There was an emergency. We dealt with it. Until the next phone call.

Your turn: Describe a scene where you had conflicting feelings. Then write out the actual feelings.

Dementia Made Me My Mom’s Mom, And It’s Devastating. Here’s Why It’s Also A Gift.

Here I am, In the Airless Room

Her need traps me in a tiny room with no windows, no door, no air. There is no one to come save me and I feel desperate, unlike myself and not the daughter I want to be.

No place can protect me from the airless room. Not when I’m on vacation, eating donuts and coffee out on the porch, admiring the sun rising over the expansive ocean. Not when I’m teaching my students, intent on sharing with them the shapes and symbols to create a family tree.

Even here, secluded away in this picturesque setting with mountains and lake, where I’ve just practiced poetry and taken mindful breaths in Child’s Pose, I’m at risk.

Mere minutes after that zen-induced state, I hear her voice through the phone and I’m snared, caught in the tiny room. “Where are you?” she demands. “I can’t keep track of whether you’re working or with the kids. You and your sister, always traveling around.” I hadn’t told her I was going to a writing retreat, dropping all responsibility, including the responsibility of her, to come here to do this thing for me.

I want to protect this part of myself from her. Or not from her exactly, but from the dementia that seems sometimes so big it is the air I breathe, the food I eat. I’m afraid if I let her see my creativity, the dementia will gobble it up, swallow it whole.

Before this disease stole my mother away, we shared everything. She was my confidante and best friend. When I first became a mother, a year before her diagnosis, I called her from my car every day during my hour-long commute, hysterical. I was distraught that I could not figure out how to be the mom my infant daughter needed. As time stretched on, anxiety crept in, telling me I would never get to that place.

My mom stood by me steadfastly, never wavering in her support, always believing that I had the ability to figure it out. This was the person she had been throughout my entire 30 years on this earth. I wonder now why I can’t access that kind of patience within me, now that the tables have been turned.

Here I am, guiding her foot into her left pant leg, having carefully chosen the pants with no button or zipper, and praying she holds steady on one foot as I crouch on the floor beneath her.

Here I am, hopping up from the table at the restaurant to wipe the glob of salted caramel ice cream from her lap after her spoon missed her mouth. All the while trying to be discreet so as not to draw attention to her disease, and also to act as quickly as possible in the hopes that she doesn’t notice me dabbing her lap because that would mean she would have to acknowledge that help is needed.

Here I am, buckling her seat belt as I drive her to yet another doctor’s appointment, steadying myself to retell the story of eight years of the slow loss of a person. The person who was my person.

Here I am, trying to get out the door of the apartment that we moved her into last year, 400 miles away from the place that she called home, and feeling the well of guilt and anger as she cries because I am leaving, because her world has become so small that she no longer has the cognition to comprehend what it is to have two kids waiting at home, the grocery shopping to do, the lunches to pack.

Here I am, sent to the small, suffocating room by this seemingly innocent question. I could gloss over it by evading and responding to her questions with a question. These days I withhold details and logistics from her, because they cause confusion and aren’t essential. This question gets me though. Isn’t “Where are you?” a timeless question mothers ask of their children?

Doesn’t she have a right to know simply because she is my mother? To evade would be to lie. To the woman who gave me endless amounts of time, energy and love from a well that never dried up, that feels like a deep betrayal. Despite the complete reversal of roles that has transpired over the last few years, I do what’s asked of me and, finally, I tell her where I am.


Published on July 30, 2018 by Rebelle Society.

My Title

I posed the question: In the story of your life, what is the title of the chapter on Mom? Here is mine.

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For most of my life, my mom was my best friend, closest confidante and strongest advocate. After dementia entered our lives eight years ago, this relationship began to shift. Slowly at first. Almost imperceptible changes. Strange handwriting began showing up on the kids' birthday cards. She stopped driving at night. Once a phenomenal cook and home entertainer, she stopped taking down her favorite recipe books and spending days in the kitchen. 

You know how you can't remember when your three year old was an infant? And then when she's six you can't remember three? Dementia is like that too. It's hard to remember what my mom was like before something strange and unknown took hold of her brain. 

My therapist gave me a tool that's really helped. She asked me to find mementos of the "before" days to remind me of who she was as a person and a mom. I dug out an old card she sent to me in college. It was full of sweet love and support. Full confidence in me. The familiar and cozy feeling of being taken care of flooded me. That comfort that someone believes in you no matter how many stumbles. 

This was the place I brought myself back to in order to come up with this title of my life story chapter on my mom. Distilled, this is what she taught me. She had no family near the town where we lived. Instead, she built her family with friends. She cooked for them, she took care of their kids, she spent time with them, regularly. And when things got hard, she didn't hesitate. Two of her best friends were diagnosed with cancer and died in their forties, when I was in high school. My mom didn't wonder what to say or how to take care of them. She marched herself into their homes to check on her girlfriends and to see what help their kids needed.

She taught me that showing up as yourself is love. 

He won't even sit with me.

I feel like I need to qualify some things before I hit publish on this piece, but I'm trying to just let this one be. Once on an evaluation form for a graduate class I taught, a student wrote that I spend too much time introducing the subject instead of just getting to it. So, just one quick thing and then I'll get to it: I have my mom's blessing to write more openly about her condition and its effect on our family.

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We were riding in the car together. I was taking her home after my daughter's birthday party. It had been a fun, if chaotic, evening. Lately, Mom has been getting worn out quickly during these family functions. Worn out leads to confused leads to agitated so I was eager to get her home and settled.

She said, I want to talk to you about Griffin. Her brain is so tricky, because it is still able to formulate such complex thoughts in one moment and has complete tunnel vision in the next. She's able to convince renowned experts in neurology into thinking she's much more capable and independent than is actually the case. I've found that conveying the nuance of my mom's condition, a rare form of dementia, is like trying to swim in mud. The little moments are revealing though.

Ok, I reply, let's talk about it now. I'm not sure what it is about my seven year old that's bothering her. He won't talk to me or play with me anymore, she says. Her tears come immediately. We used to play games together all the time and now he won't even sit near me. If I sit near him he gets up and moves. 

I want to say oh, that's not the case at all. But she's right. I'm surprised that she's noticed because her condition makes it hard for her to judge social interactions. I take a breath and say, I've noticed too. It's confusing for them, Mom. It's confusing for me, so imagine how hard it must be for the kids. He doesn't know how to act.

But I'm still the same person, she says. I'm still me.

No, you're not. The thought is quickly formed in my head, but I catch it before it comes out of my mouth. This is the person that I considered my closest friend in life, the person who knew me best in the world. For a decade bits and pieces of her have been slowly falling away. I try to be present and be grateful that the decline has been so slow. When I do allow myself to reflect, it feels like I'm grieving. She seems unable to understand that I am deeply sad about her decline. Maybe she's incapable of this type of empathy now because of what's happened to her brain. Or it might simply be that it's hard to acknowledge that this disease is affecting her daughters and grandkids on a deep level. A particular cruelty of this form of dementia is that she herself is fully aware of the abilities she's lost.

I've noticed this happening more often. She says something with which I disagree, where the whole situation is not being represented, and I don't know how to respond. I feel so stuck. Every response is the wrong one. Reminding her that she can't play any games with the kids because she is essentially blind and can't see the faces of the Guess Who game much less have the coordination to tap the figure down is not constructive. Going along with her head in the sand view that, Everything is just fine, doesn't keep me in integrity with myself. I think I know what she means when she says this - that at her core, the truest essence of herself, she is still the same, even as all the former capabilities slowly get stripped away.  I've started to stay silent in these moments, all these thoughts whirling in my head


Lots of us are dealing with dementia in a loved one. I became a member of the sandwich generation earlier than many. I was 30 and pregnant when my mom was diagnosed. I have a wonderful support system and a terrific therapist. Still, I feel an internal drive to write about it to bring it out into the light. If you are experiencing something similar know that I see you. I see your shoulders hunched forward and the rise of anxiety in your chest when your phone pings. I see your struggle.

Do you know someone who would benefit from reading this? Please share.