The holidays have a way of holding up a mirror, reflecting who we’ve been, who we are, and what we imagined they would be. When you’re caring for someone with dementia, that reflection can feel especially poignant. Traditions that once felt somewhat effortless require planning- lots of planning. Moments that once brought uncomplicated joy may arrive tangled in a web of grief. I know this because I’m living it. Yet despite that, there can still be meaning. There can still be warmth. There can still be joy. I’ve learned that the holidays don’t disappear when dementia enters your life. They change.
It’s Okay to Grieve What Was
Before anything else, I want to say this, it’s okay to grieve. Grief doesn’t only belong to death. It belongs to change and the ambiguous loss caregivers know so well. It belongs to the realization that things won’t unfold the way they once did. It belongs to the absence of routines, conversations, or roles that were once so familiar you never imagined them ending.
For me, the holidays carry memories of Bruce being at the center of it all. He loved this time of year- the energy, family time, the traditions. He was the pancake-maker, the get-out-in-the-snow-with-the-kids guy, the steady presence moving through the house as the day unfolded. There was comfort in the routine of knowing exactly how the day would go, especially since I’m a creature of habit. Dementia doesn’t erase those memories. But it does create space between then and now. And that space can ache.
Grief during the holidays can show up in unexpected ways. It can arrive while pulling decorations out of storage, wrapping gifts or hearing a familiar song. It can catch you off guard in the middle of a room full of people, or in the quiet moment when everyone else has gone to bed.
I find myself, harmlessly, cursing Bruce’s name while wrestling with the holiday lights or taking on tasks that used to be his. Not because I’m mad at him, never that, but because I miss the way he once led the holiday charge. Yes, he taught me well, but I’m still allowed to feel annoyed that this is one more reminder of how things have changed.
If you’re feeling that mix of grief (and yes, annoyance), you’re not doing the holidays wrong. You’re responding honestly to a very real loss. You can miss what was and still show up for what is.
Letting Go of “How It’s Supposed to Be”
One of the hardest parts of the holidays as a caregiver is the pressure, both external and internal, to make everything feel “normal.”
We’re surrounded by images of what the holidays are supposed to look like–perfectly decorated homes, lighthearted gatherings, smiling faces captured in matching pajamas. Even when we know these images are curated, they can still create a sense of failure and extra loss when our reality doesn’t match. When dementia is part of your family, “normal” becomes a moving target.
For a long time, I wanted to the holidays to remain exactly as they were, as if this might protect us from what was happening. But I’m learning that flexibility isn’t giving up. It’s adapting. It’s choosing compassion and reality over perfection. It’s understanding that meaning doesn’t live in the size of the gathering or the polish of the day. It lives in presence.
Making Room for New Memories
There’s a silent fear many caregivers carry; If I make new memories, I’m letting go of the old ones. But making new memories doesn’t erase what came before. It doesn’t diminish the love or the history you share. It simply acknowledges that life is unfolding differently now.
There’s a misconception that if the holidays aren’t what they once were, they must be hollow. But meaning doesn’t require everything to stay the same. It requires connection. This holiday season, our family will still unwrap gifts and sit together at breakfast. But instead of Bruce making our favorite pancakes, I will. And no, I can’t share the secret family recipe. 😉 We’ll put on a holiday movie. There will be laughter and cuddles. And there will almost certainly be tears because we can grieve and make room for joy. The joy doesn’t cancel out the sadness. The sadness doesn’t cancel out the joy. They coexist.
A Few Gentle Reminders for the Season
As you move through the holidays, I hope you’ll carry these truths with you:
- You’re not failing if things look different. You’re adapting.
- You don’t owe anyone an explanation for how you choose to celebrate or not celebrate.
- It’s okay to simplify. Less can be more.
- Grief is not a sign of ingratitude. It’s a sign of love.
- Joy doesn’t have to be loud to be real.
Holding Both / And
In my book, The Unexpected Journey, Dr. Pauline Boss talks about both/and thinking. So you can grieve what the holidays used to be and make room for new traditions. That’s how I push through. I hold the ache of what dementia has taken from us while we trim the tree and the gratitude that we’re still together celebrating. I hold the memories of Bruce as the man who once carried this season for our family, and I hold the reality of who he is now, with the same love. I hold tears and laughter in the same breath, often in the very same moment.
There’s no denying that the holidays are different now. But different doesn’t mean empty. It doesn’t mean broken. It doesn’t mean devoid of meaning. There is still connection. There is still love. There is still joy to be had. And if this season feels heavy for you, please know that you’re not alone. You’re not doing it wrong. And there is no single “right” way to move through this time of year when dementia is part of your life. There is only your way. And that is enough.
Perfectly written. My husband and soul mate was diagno 10 years ago with mixed dementia most likley caused by CTE. He was an athlete.
This holiday is tough this year. Cyclical grief cab rear its ugly head.
I wish you and your family a Blessed Holiday. Tha k you for putting in words exacly how it feels to me. I continue to make new memor And have gRatitude Bob knows me most days.
FTD crushes “what was supposed to be”. And we develop a capacity to live in the duality of “what is”, “what was”, and a very different “what will be”. And the awareness of it all comes bit by bit, as our lives move on through FTD and beyond it. I have been reading “The Order of Time” by the italian Physicist Carlo Rovelli. And one of the profound insights is that there is no absolute “present” or “now”; no absolute clock for our collective lives. Our individual references to time are all relational (as in connected to those we love the most); we are all experiencing life in our own custom version of time that, for caregivers, literally rips one out of the procession of life, and forces us to experience love and loss, singularly; apart from the rest of the world. And it is so boldly fracturing, that it feels very unsettling, lonely, and apart from everyone else. Your writing and sharing helps those who are still completing the ftd journey to reconnect, and to feel just a little bit more “seen” and understoon. Thank you.
Thanks so much for this reminder. I read, and LOVED, you book and continue to grow through this process. Frustration has defi been higher, and i had bot thought about the christmas memories and preparations feeding into my grief process. I appreciate you!
This is so beautiful emma. I’m struggling alot this holiday season. I’m Holding such an array of emotions both painful and SENTIMENTAL/sweet… its a heavy weight that is only lessened by the solidarity i feel with others walking a similar path. My heart goes out to you and all families managing someone with dementia. I guess the good news in all this is that i was motivated to have all our old vhs tapes and camcorder videos moved to digital format (dropped off yesterday) I am actually looking forward to the joy (and the tears) that seeing them will bring.
Great perspective Emma. As someone who knew the kid bruce growing up i get what you have lost. Keep going. Hug the girls. Your mission for caregiving touches us all. God bless. Merry christmas.
A bIg “thank you”, Emma! You’re helping: a LOT! BEST WISHES TO YOU AND YOURS FOR THE HAPPIEST, MOST JOYFUL HOLIDAY SEASON YOU CAN HAVE. (Sorry: my computer is stuck at all caps!)
So grateful for this support!
I am finding that keeping things as simple as possible lets in more joy. Neither of us becomes overwhelmed.
My husband has bvFTD and ALS
Thank you for these excellent truths. So well said, as usual. I appreciate every one of the things you pointed out.
Thank you Emma for all you are doing. I am reading your biok and have quoted things you have said or suggestions you have made to many people. My partner has vascular dem. Just hit 3 years. And our mom, who is 94 is having issues. When my phone alarm goes off now, my siblings and or friends jnow its time to breathe. Thanks to you sugg. It does help. Wishing you and your family a very merry Christmas. Chrissy
Thank you, emma, for allowIng the feelings to be as they are. What you write here in this blog is brutal and beauTiful. Brutal because the loss is so hard that it is terrifying, and beaUtiful because we get to be their person. But role change hurts, no matter how many pancakes. I hope eventually peace will find us.
This is the First year that i HAVE not DECORATED the house. That’s okay. I suppose It is part OF my grief process. We no longer have company visiting and the “adult” children won’t BE home. We are still lighting Chanukah candles and exchanging gifts on christmas. The holiday just looks and feels different. Yes there is an emptiness. In that EMPTINESS there is an ache. There IS constant grief. And yes, still room FOR joy. We are moving forward differently. Seeking out THOSE friends THAT are still there and not looking FOR the ones that aren’t. FTD is constantly in the room, but does not own the room.
Thank you so much Emma! “Dementia doesn’t erase those memories. But it does create space between then and now. And that space can ache.”. This sentence got me, because the ache is deep and profound.
My husband, age 64, was recently diagnosed with young onset Alzheimer’s with a rare frontal variant with a dysexecutive phenotype. He is a former marine as well as an orthopaedic spine surgeon. To see his decline tears at every heart string I have and it’s brutal to see the hearts of my teenagers torn apart. Thanks for your words and your voice. So many people just don’t understand what this journey is all about. He’s currently in the hospital, struggling to overcome an emergent surgery he had in november for a torn esophagus. He spent Thanksgiving in the hospital and now as we get closer to Christmas I fear he might still be there. I’ve struggled to make this holiday “normal”, but I just can’t because nothing is normal and won’t be moving forward. It’s about change and acceptance. I’m working on all of it. Thanks for being such a light for all of us silently doing battle with these horrible diseases that steal our loved ones from us.