Dear Friends,

This is the closest thing to a Christmas letter I will write this year, and it is to those of you who live with dementia and those of you who are caregivers.

First of all, it doesn’t matter to me what you celebrate. Hanukkah. (Obviously I don’t celebrate Hanukkah because I looked up how to spell it and it still doesn’t look quite right.) Christmas. Winter Solstice. Festivus. National Eggnog Day. Maybe you don’t celebrate anything, and that’s fine with me. Maybe you usually celebrate something but don’t feel like celebrating this year. I’m not here to judge.

If you choose to celebrate something this year, I encourage you to be flexible. I encourage you to be patient with yourself and with others. I encourage you to accept that life is changing. Perhaps some holiday traditions will continue, whereas others will not. That’s okay.

Remember you can say no.

Yes, I am talking to YOU. You can say no.

If someone invites you to an event, you get to decide whether that event is going to work for you. Maybe it will be too loud, too crowded, too long of a drive, too time-consuming, too intense. Maybe it’s at night and your loved one with dementia typically goes to bed early. Perhaps you’re a caregiver and you just don’t have the energy. All of those are legitimate reasons to say no.

You can say yes–and then change your yes to a no when your loved one with is having a rough day. If someone judges you, they don’t understand dementia. People living with dementia have bad days, and on bad days some things might just not be possible.

Church services, especially crowded ones, can be stressful for someone with dementia. (Not to mention that whole COVID thing, right?) Can you live stream the service? Or organize a short candlelight service for your family at home? Maybe your family has gone to Midnight Mass every Christmas for 40 years. Perhaps that just doesn’t work this year. It’s okay.

Maybe you don’t need to volunteer to host the family holiday party. You say you’ve hosted it for 30 years? Sounds like you’ve paid your dues and it’s someone else’s turn. You know what’s great about NOT hosting? You can leave!

On that note….

Have an exit plan. If someone with dementia is having an off day, they may only be able to stay 30 minutes at family Christmas. This is why you always drive separately. Don’t ride with Aunt Jean and Uncle Tony. They might want to stay all day. Don’t let anyone guilt you for an early exit. I give you permission to pull one of those sneaky exits where you don’t say goodbye. If you need to leave, just leave.

Is there a place you can crash for a quick break or nap if the gathering is overwhelming? Can you escape to the basement for a deep breath if the grandkids are out of control with their ridiculously noisy and obnoxious toys? Don’t be afraid to step away. Keep in mind that a gathering like this can be anxiety-provoking for someone with dementia who may not recognize everyone (who are these people and why do they want to hug me?) and be sensitive to noise.

Giving cash or a gift card always works if you aren’t up for shopping. It is okay to order pizza on Christmas Eve. I am guessing no one will miss your holiday card that much if you don’t send one. And those delightful platters of high calorie treats that you bake and deliver to your neighbors? They will survive without them.

Not that I speak from experience or anything, but if you aren’t up for wrapping gifts, gift bags are great. I’ve also been known to just hand people their gifts in a plastic Target bag. Tacky? Maybe. But I’ve never had anyone refuse the gift because it wasn’t wrapped.

Maybe this is the first year that you celebrate the holidays at the nursing home with Grandma because taking her home causes too much confusion. Two or three of you visit at a time. Having a large group seems to cause anxiety. And then you have your family Christmas bash at home without her. You feel like an awful person, but you’re not. Sometimes your best option just isn’t all that good. We do the best we can.

So that’s it. Give yourself a break. Change your expectations. And, happiest possible holidays!

XOXOXO,

Elaine