Because I am who I am and I do what I do, I sometimes pause for a moment at holiday celebrations and observe how most family holidays aren’t exactly dementia-friendly. Lots for prep work and clean up. Lots of people moving around. Lots of simultaneous conversations. Lots of competing noise. Lots of choices. Lots of lots of things.
At the risk of being redundant, I want to address holiday gatherings for those living with dementia and families. I discuss this every November/December, but Easter has me thinking about it again…
I know change hard, but sometimes staying the same is harder.
It is not beneficial to be tied to holiday rituals that no longer work for your family.
Holiday gatherings can become shorter. It’s okay to have an exit plan. There can be quieter places in the home for people who need a break. Food can be simpler. A catered meal is just fine. Maybe you don’t have to invite the in-laws of your in-laws. And Aunt Jean has hosted Easter for 27 straight years. Perhaps it’s time to re-evaluate whether that’s the best space for everyone.
And (this is a hard one) maybe going to a family member’s house will be anxiety-provoking for your dad with younger-onset Alzheimer’s. You may want to consider sending a few small groups to the nursing home to visit with him in a familiar environment throughout the day.
Your mom has dementia and can no longer make her famous mashed potatoes. It’s a lot of steps and she’s exhausted by the time the gathering starts. She used to love setting up an Easter egg hunt for the kids, but she doesn’t really seem to get the concept anymore. A couple options–someone else can do it, or (and I promise it will be okay) you can NOT have an Easter egg hunt.
Sometimes clinging to rituals doesn’t set people up for success. We change as individuals. We change as families. What we used to be capable of and enjoy doing is perhaps now a stressor. So let it go.
Allowing change makes us acknowledge dementia, but there’s really no way to stop the change. It’s about whether we respond to those changes pro-actively for successful family gatherings or wait until we crash and burn and need to make an emergency plan. And the former is much less stressful for all of us.
It’s okay to re-boot the holidays.
And it’s okay that not everyone will understand.
Your wife has Alzheimer’s and she’s having a bad day, so you make a decision to skip the holiday gathering this time. You stay home and she sleeps most of the day. Your family doesn’t get it. After all, your wife seemed fine last month when they saw her out and about. They aren’t sure if you are exaggerating what’s going on with her.
YOU DON’T HAVE TO EXPLAIN YOUR DECISION TO ANYONE.
You don’t have to waste your mental energy justifying your choice. It’s not your job to make them understand. If they want to learn more, they can reach out to you and (in a perfect world) ask if they can drop by some green bean casserole. If they judge you, keep in mind that not everyone is equipped and motivated to support you on this journey. And it may surprise you who is and is not equipped. Move on.
Family is great except when it’s not great, right?