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Dementia and Holiday Travel: Good Idea, or Not So Much?
My mom and I had a pretty awful travel experience, which I recount in Keeping Your Cool When It All Goes Sideways. And it wasn’t even the holidays. The silver lining? My mom doesn’t have dementia. The trip was awful enough without throwing dementia into the mix.
Your parent or partner is living with dementia and holiday travel is going to be even more challenging. Thinking of doing some holiday travel? Read this first.
Is This A Good Idea?
The Alzheimer’s Association recommends eliminating travel altogether at a certain point in the disease process, a recommendation I wholeheartedly endorse.
Pretty much all the things I warn people to avoid like Zika are present in spades during travel. Too many people, too much noise, and too much stuff is going on. Then there’s too much visual input, and multiple unfamiliar environments and situations.
Be warned, conditions are positively ripe for (at least one) meltdown.
But assuming you want to travel anyway, back to the Alzheimer’s Association recommendation: anyone at level 6 or beyond should not travel. Use the FAST Scale to determine where your loved one is in the process, and proceed (or not) from there.
Level 6 means anyone who needs assistance getting dressed should not travel. Assistance getting dressed and travel don’t sound like they have much to do with one another, until you remember that dementia affects the whole brain. Dressing assistance is just one concrete need we can point to at that stage of the disease process.
Assuming your parent or partner isn’t at level 6 yet, here are some additional ideas beyond what I offer in Keeping Your Cool for how to ease or eliminate travel problems.
Before You Book
Ask yourself a few questions: Why are you making this trip? What are you hoping to accomplish? Is there any way the person/people at your destination can travel to you instead?
Also consider doing a dry run. Go through the drill as if you’re going to make this trip. You can either do this alone, tuning in to how it would feel for a person living with dementia, or take your person along with you. If it goes well, there’s no guarantee it will at the time of actual travel, but at least there’s a chance it will. If, on the other hand, your dry run is a disaster, at least you found out before you booked.
Manage Your Expectations
Everything is going to take longer. Airports are busy places, especially during holiday periods. Add together dementia and holiday travel, and confusion, disorientation, and anxiety are almost guaranteed.
Assume the trip will be one long exhausting grind, and be pleasantly surprised with any bright spots that happen to crop up along the way. I’m all for positive thinking, and I’m also all for realistic expectations.
Dementia and Holiday Travel: Is it Worth it?
Only you can answer that, of course. When it comes to a person living with dementia and holiday travel, advance planning, hypervigilance, and extreme patience on your part are required.
Remembering why you’re doing it is something you’ll want to go back to again and again so you can have the best possible holiday experience. The following strategies will help you pull off the logistics.
When You’re Ready to Book
Don’t even think about booking a trip with tight layover windows. As you’ll learn during your dry run, everything takes just a little bit (or a whole lot) longer than you originally envisioned.
As you’re booking, arrange for a wheelchair. Even if your person usually walks, the amount of walking in an airport will burn a lot of energy. It’s better to have the wheelchair and not need it than the other way around.
And definitely pop for the upgrade to TSA Pre-Check through your airline. It’s somewhere between $25 and $50 extra per person (per leg of the trip), and worth every last penny! You get to bypass at least one huge line, plus you get to keep your shoes on and skip the body scanner.
How will you get to the airport? This may sound dumb, but hear me out. I live 45 minutes from the airport. We typically park in economy parking and ride the shuttle bus to the terminal. Will that work for you and your person, or is that going to be too much to successfully navigate before the trip even officially starts? Having a friend drop you directly at Arrivals or taking a Lyft may be a better option.
Next, make clean copies of identification, health cards, etc. Carry those with you just in case. If you haven’t already, complete the Safe Return registry prior to travel just in case you become separated. And consider ordering “compassion cards.”
These are business card-size, used to discreetly slip to ticket agents, TSA agents, servers, flight attendants, taxi drivers, etc to explain your parent or partner is living with dementia and holiday travel requires extra time anyway, so the professional (who may also feel harried) had best be patient.
Although your parent or partner isn’t yet incontinent at this point in the disease process, you should still have incontinent supplies and a change of clothing (including shoes–trust me on this one) in your carry-on, just in case. Travel is stressful and confusing, and people may not always make it to the bathroom in time.
Load an mp3 player with favorite songs. Stash that and earbuds in your bag. Music can go a long way toward soothing when the environment becomes overwhelming. Throw in some snacks while you’re at it. You’ll be grateful for the ability to quickly whip out a protein bar when the line at Hudson News is spilling out onto the concourse.
Finally, have a solid idea what you’ll do in case of a meltdown, rather than trying to wing it on the spot. It’s good to be flexible, of course, but some behavioral rehearsal beforehand can go a long, long way to a much smoother outcome.
At The Airport
Spend the $5 to use the little shopping carts in the airport. This will keep your parent or partner from burning through energy better used elsewhere by schlepping a bag (yes, even one with wheels) and can also act as a steadying device.
Immediately ditch any version of multitasking, like, “You go use the restroom, Mom, and I’ll get in line at the Starbucks.” Even someone who typically doesn’t become easily disoriented can and will in this environment.
Use the family bathrooms so you can stay together and maintain visual supervision. I know it sounds silly, but your person is living with dementia and holiday travel makes everything busier–including the restrooms. It’s too easy to lose track of each other. Because you won’t always be the only family in need, just head to the bathroom as soon as you get into the terminal, and then do it again before boarding and as needed in between.
If your mom or wife insists on carrying a purse, you should be equally insistent that it must be a cross-body bag. That eliminates the risk of setting it down and forgetting to pick it back up. For your dad or husband, offer to carry his wallet in your bag.
Walking is great to burn off excess energy or anxiety, and necessary to get where you’re going, but sitting for a spell is good, too. Stack carry-on bags to make a footstool for your parent or partner in order to eliminate ankle swelling to the extent possible.
Christy Turner is the founder of DementiaSherpa.com, creator of the program Successfully Navigating The Holidays and a featured blogger on SixtyAndMe.com. Her segment “Guiding You Through Rough Terrain with The Dementia Sherpa” appears on The Alzheimer’s Podcast every other Tuesday. Christy has enjoyed the privilege of working with 1,123 people living with dementia and their families, including 7 people in her own family.