notes from seat 13d

that's d for dad

Up here again. This time I am heading to Charleston. Never been. It is for a play called Midlife Monologues. It will be coming the NY sometime at the end of 2025. Speaking of midlife, can you believe I will be turning 60 this year? I know. Me either. I am on Breeze airlines. (I know. Me either.) That is a story for another day.

Leaving from Westchester airport reminds me of flying in from Chicago to visit you in Chappaqua. I remember meeting you at the curb in your silver VW bug with custom Grampsy plates you bought for yourself. A silk flower in the built in vase. Everyone in town called you Grampsy. I can see you in my mind’s eye, waiting and waving me in with your sweet smile. There was no cuter Dad, of that I am convinced.

I wish we had known that you would only answer to Neil in the end. I tell anyone who will listen that this may happen over time. As everyone began to call you Neil outside of the family, we never realized it would stick. On hospital visits and appointments, we would have to tell folks - “please call him Neil.” We wrote it on paperwork and whiteboards in your various rooms. It became the one and only. *If you have a beloved nickname, like Grampsy or even Dad when memory loss comes to visit, ask everyone to use it. We are not the kind of kids or family that would have called you by your first name, but we did. One day it just fades into the what was, and you all learn to just use what works. And it did.

We have now heard from a few far flung friends, old work pals and some Cleveland family. I posted your obit to LinkedIn. It’s kind of like a more business-y social media site. You were up on Facebook and Insta, but I am not sure you were ever a LinkedIn guy. When I saw that your old firm Sudler & Hennessey was on there with 15k followers, I highlighted it in my post. We heard from former employees! While I knew it, their reflections of you as a work associate and boss were the same warm Midwest-y vibes as you shared as a Dad. I told folks to do this too. You get to see your person in all their 360 degree splendor. It felt good to hear from folks you mentored, who also loved you and learned from you. One called you “Uncle Neil”. Those “Mad Men” days of old were some of my favorites from growing up. I did cartwheels down those long ad agency corridors and borrowed those amazing smelly markers from the art department. Tissue paper layouts and ashtrays on desks.

I remember when you came to school in 4th grade on career days and taught us all about “truth in advertising”. How sometimes the toys did not work like the commercials and why, or how tricks of the trade were used to replace white glue for milk in cereal ads. I loved learning about the marketing behind Tickle deodorant. Four scents in such cool polka dotted packaging they were “collectible”. I proudly had them all displayed on my dresser. Someone should bring that back, it was so good.

The art shows that Sudler used to host for the kids of employees was epic too. Even if you made a brown paper bag turkey, it was rested on a plinth with glass on top like hi-end sculpture at a museum. Your name and age were placed on a card in a fancy font by your work, for all to peruse in the lobby.

Just yesterday, I told a new writer friend about the year that Mr. Hennessey floated you a 10k loan against your bonus for the down payment on our first house in Middletown. A cool ranch over all that proud expanse of a one acre lawn you proudly manicured. The memories of 41 Robin Court are vivid. Chasing Fluffy in the sprinkler. Plucking the dandelions for a few cents each to keep your beloved “green carpet” clear of their polka dotted yellow fringe. The shed with hot tar shingles. The creek you crossed to get to the O’Hearns house. The dead end with the path we walked to school. All the bird named streets.

Not going to lie Dad, it’s been a slog since 1/27. I feel like I am doing the breast stroke through syrup. Life feels heavy, hard and foggy. Every time I get in the car I feel like it knows its way to you, still. I long to visit. I miss visiting. I see the sign for the Saw Mill and for a split second think of hopping on and making my way to exit 29. Then, I remember. Again.

Letting in the “before” memories feels new. And nice. I am not sure in learning to meet you right where you were in the messy middle of then and now, when I put the old Dad on the back burner. At first you fight it, and then you realize it is how you will survive. The beauty of what remains. The present. It becomes urgent and important. I would meet you right there. Not knowing on any given day if there might be a glimmer of recognition, or a “love you more” when I left. For self-preservation, I guess I did not allow myself to be the little girl who flew kites and fished with you at Holmdel Park. Or the 6am Sunday morning ice skater who collected patches at lessons and shared hot cocoa and ice cold toes with her proud Dad.

They are flying into scene like flashbacks.

I am grieving both of you now.

From clients I have learned that not a lot of folks check in after a bit. It’s the truth. Been quietish for the most part. Some don’t know what to say. Most just think I am ok, I am sure. Some days I think I am too. And then I don’t.

On Tuesday I picked up a new ring I had made. I took an old tie pin of yours emblazoned with NL and had it soldered to an oval topped signet ring. Wish I could ask you where it is from. It was in your jewelry box. Seems kinda 70s. I am wearing it on my middle finger, which seems fitting. I mean f-this. Memory loss stealing your nothing-to-do-but-enjoy-life days. That brilliant mind giving way to this hideous disease. I will wear it proudly and help others. I learned from the hospice social worker that I have to wait a year post-loss to be able to volunteer. So, I will keep writing and sharing until then. I feel so called to tell folks what we could not have known, until we did. I was a guest on the MakeTime podcast, with Emma Hemming Willis. She is Bruce Willis’ wife. He has dementia, Dad. Frototemporal dementia (FTD). I know. Me either. She is a force. So is her partner Helen Christoni who lost her beautiful daughter, Bella. We made time for grief! Emma is working on a new website where I will be a contributor. Both women are advocating for women’s brain health. They created Make Time Wellness, products for brain health.

On the plane on the way home, I am sitting next to a woman who has the same tote bag as I do. Made us both smile, and opened a quick conversation. I swear I must wear a magnet on my heart. She tells me that she lost her Stepmom, just the evening before to Alzheimer’s. At 6pm. Her family was there. She was with her daughter in Charleston enjoying a mother-daughter trip. You know that at first made me kind of recoil into “gosh, wouldn’t that be cool if I could do that with Mom” territory and then…

I gave her my website info. She lives in the city too. Did you send her to me? Did you send me down the street to see that stunning temple from 1749? How about the dolphins flipping tricks at the end of the pier?

I am trying to see you Dad. To remember and never forget. Send more signs. Miss you madly. ILYMTTWWW

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Grief Tending After Losing Dad to Alzheimer's

Some things I have been reckoning with and maybe you are too. I'm truly sorry for your loss. Losing a parent to Alzheimer's involves a grief journey unlike others - one where you may have experienced anticipatory grief while they were alive, and the grief of losing them. I hope it helps and I am thinking of you. If you know someone who needs this, please share it far and wide. x, B

🤍Honor the complexity and confusion of your grief

- Recognize that Alzheimer's grief often involves multiple losses over time, with the final loss bringing its own wave of emotion. It may feel like you have lost two people all at once.

- Some may feel relief alongside sadness - relief for them or for yourself and this is normal and doesn't diminish your love or your grief

🤍Create space for remembering

- Collect photos and stories from "the before" to celebrate who your loved one truly was. You have met them in new ways and you will grieve them in the new and old too.

- Allow yourself to move from caretaker to child again and again

-Write to them and about them. Often. And with abandon. Even if you never share with anyone, or decide you might. The act of writing helps and heals.

🤍Be gentle with yourself

- Grief may feel complicated as you drift between the before and after - some days will feel heavier than others. You have been an anchor. And you will find a new way of being in the world.

- Give yourself permission to step away from those caregiving responsibilities and hours and focus on your healing

🤍Seek understanding support

- Connect with others who've lost parents to dementia through support groups (in-person or online) being with others who understand can feel like a shorthand. And an understanding you need not have to explain.

🤍Honor all versions of your Dad

- Find ways to acknowledge both the father you knew before Alzheimer's and the relationship you developed during his illness

- Recognize the you it took to be alongside him through this journey. You may mourn your caregiving self too.

Remember that grief has no timeline. Some days no rhyme or reason. No season. Some moments of deep sadness may show up unexpectedly, uninvited --even months or years later, and that's perfectly normal. What you're going through deserves gentleness and care. And time. I see you. Sending love. x, B

Tell me about your loved one⬇️