Tuesday, June 14, 2016

Father's Day

Our wonderful daughter Laura, was born on Father's Day in 1991. If I close my eyes, I am pretty sure I can remember every minute of that day - but most especially I can remember how thrilled Alex was. He was a pretty reserved guy in general, so to see his excitement, and hear him exclaiming, "Ooh, Ooh Ooh! It's a girl!" was beyond wonderful at the time, and still is wonderful.

Laura's middle name is Alexandra. She and her dad have always had a close and sometimes contentious bond - and they have a lot in common. When she was younger, I worked part-time at home  - and when she was a bit older, we reversed roles, and Alex worked part-time so that he could spend more time with Colin and Laura.

He would tuck her in by singing some of his mother's favorite songs from "The Old Country," and would read to her for a very long time. Bedtime took forever at our house - but I know that's partly because everyone enjoyed it so much.

He helped her learn to read, attended very single piano and violin recital she ever was part of, drove her to lessons,  taught her to ride a bike, and encouraged her to climb higher than common sense would dictate when he took her to the jungle gym at the park.

He was a rigorous (but fair) editor when he was proofreading Laura's homework - and now that she is working on her college degree, she knows that her facility with reading, writing, and speaking is due in large part to him.

Laura lives at home with us while she goes to school and works pretty much full-time at a nearby vet clinic. When Alex was first diagnosed, I was very concerned about her staying with us through all this. I wanted to be kind, but I really thought that the best thing in the world for her would be to detach a bit from the home scene and find her own place. I was really concerned about the affect this disease would have on her and her brother.

Just a little medical fact here. Frontotemporal dementia strikes at an earlier age than Alzheimer's with a typical  age of onset is somewhere between 45 and 65. This means that a lot of kids Laura's age and younger are dealing with this, too - and it is hard for me to imagine how some of the very young families deal with this. We are fortunate that Alex was able to compensate so effectively through the earliest symptoms so that there is a long store of happy memories to sustain us all.

Anyway, when Alex was diagnosed Laura was adamant that she was going to stay close through the whole thing, and that there was no way she as going to move out. She has been a wonderful help to me in matters small and huge. She has had patience and stamina and kindness far outside of what anyone should expect of her. And she has gracefully taken on some of the unpleasant caregiving tasks with her own special style and sense of humor. And in that, she is just like her dad, who is steady and honest and kind.

But she doesn't call him "Dad" anymore. She just can't - and I do understand, because he doesn't act like her dad anymore. She knows, and I know that he still loves her - but emotional blunting and lack of empathy are a huge part of this disease, and that has made him very hard for her to reach.

And as these two holidays approach right on top of each other, I need to say that special occasions are TOUGH! I think that's probably true for most families that are trying to hold it all together. No matter how hard we try, these occasions serve to remind us of how thing used to be, and how much they have changed.

Trying to replicate Thanksgiving and New Year's and birthdays (and Father's Day) so that they will be the same and have the same meaning as they used to is truly a terrible idea. We have had some pretty bitter realizations while trying too hard to hang onto the past. Better to think of different ways to celebrate and look for new ways to be together and love one another.to celebrate. So actually, when you run into people like us around the holidays, tread lightly. It can be a pretty sad time!

So this year, when we do the annual birthday dinner for Laura, Alex will not be joining us. It feels sad and shitty - and we hate leaving him behind.

But - noisy restaurants are stress-filled places for Alex. His entire body projects the high anxiety he feels in these places. We need to select the time and place carefully, alert the wait staff about some of the odd behaviors he might exhibit, and have a clear bathroom strategy. We also have to ready to leave early.

None of this sounds like a good birthday dinner for Laura. So instead, we will go out for dinner without him, Laura will let herself get a bit tipsy, and we will have cupcakes at home after the dinner. And that way, Alex will get to celebrate in way that will feel good to him, and Laura will get a party.

I know it will be sad. It is just another marker and reminder of something that Pauline Boss calls "ambiguous loss -" where the person you love is there, but not there.   My biggest hope is that instead of dwelling on that, we will just get together in bits and pieces to make a glorious whole, and celebrate that we are all here now.

And that each and every one of is just right - exactly as we are.


  1. Thank you for this. For me, it helps to hear others experiences with FTD. And, you're only the second person I've heard talk about "ambiguous loss", which I feel is very pertinent to the emotions I have in dealing with my husband's FTD. Please keep writing. ❤️

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  3. Thank you so much for your Blog, Dawn. It seems that my situation may be similar to yours in that my husband, very high-functioning, best friend, and the love of my life for 40 years, was diagnosed with early-onset BV FTD in April 2015. A year and a half ago, he was teaching college. His decline is somewhat similar to what you describe -- with the addition of procrastination (loss of executive brain function) as a strong presenting symptom. This disease is tragic and it heartening to find ways to help our fellow care partners survive, and hopefully later, to thrive.

  4. We lost my mother in law this past March to FTD/PPA and my husband experienced that very long, slow mourning of her in almost utter silence. He would not discuss it with me. We still haven't discussed her death, which was, in many ways, a relief, which is awful to say, but honest. It was so very sad, but also we were thankful his father no longer had to care for her, as she remained at home the entire time with over a year of hospice care at home.