Los Angeles — How do you travel with people with dementia?
Learn to count up to No. 1:10. slowly. Back and front. Many times a day.
No. 2: Bring a companion — if possible, bring someone with Rule No. 1 down pat.
No. 3: Maintain a well-planned trip that is as self-contained as possible.
No. 4: Choose one destination and get there as soon as possible.
No. 5: Be prepared for the nasty moments that involve the toilet, especially if your travel companions are of other genders.
I am not an expert and these are not comprehensive claims. People with dementia are less responsive to changes in location and daily life, so dementia and travel are rarely mixed.
However, according to the US Centers for Disease Control and Prevention, an estimated 1 in 9 Americans over the age of 45 reports “subjective cognitive decline” (memory loss that impairs daily life), and dementia is common. Is becoming a reality for our family. And sometimes even people with dementia need to travel.
The National Alzheimer’s Association predicts that more than 11% of Americans over the age of 65 will have Alzheimer’s disease, more than doubling by 2050. The website has some travel tips as well as AARP and the Family Caregiver Alliance.
First, these sites recommend two things. Honestly assess the companion’s travel ability and ensure that the companion carries or wears some form of identification in case of breakup. These sites reveal that your experience depends on the illness status of your companion.
I can prove it. My husband was diagnosed with Alzheimer’s disease in 2011. As his illness progressed, our travel options changed dramatically. Nevertheless, we have traveled by plane and car for the past 10 years. In 2013 I traveled to New York and then Europe to meet my family and friends. It was a kind of farewell tour while my husband was still able to recognize his brother (of some sort).
The trip was not without that challenge. In Frankfurt, Germany, where I have never been to either, I took a walk to adapt to the new time zone. During the walk, the husband not only visited the town in his twenties, but also claimed to have lived for nearly a year. It wasn’t until the next day that he thought we were still in New York. A 6-hour flight to Germany was not registered.
After eight years and one pandemic, I’m no longer thinking about air travel with my husband.
This spring, we were fully vaccinated, the location was reopened, and we wanted to do more than share the screen with friends and family in Washington.
Driving was the only option. My husband is worried every time he leaves home and excites him even on a short car trip. However, my desperation to visit was strong. Terriers and spaniels are the only creatures that my husband seems to be aware of, so I thought they would help calm my husband.
But logistics was daunting. It’s a two-day drive. How do you do a pit stop with a dog or husband who can’t use the public toilet alone?
Fortunately, a dear friend who manages the youth camp offered to accompany us on a drive and return to Washington.
Here are some tips on how to travel with people with dementia in reverse order.
5th place: Awkwardness of the toilet
Parents, especially single parents, always deal with this as a mother drags her 4-year-old son into a woman’s room. Adults are more complicated.
The last time my husband used a public toilet alone was two years ago. He stepped into the department store’s toilet, handed his jacket and hat to the man who had washed his hands, and tried to pee in the sink.
The saint kindly guided my husband to the urinal, then took him out and handed me his clothes with sympathy and obvious relief.
awkward? Oh yeah. That’s why you have a unisex family toilet, right? They should now be standard in all US rest areas, department stores, and other public spaces. Tim Pile, executive director of the American Toilet Association, which advocates public toilets, said it should, but not, for economic, political, and mere ignorance reasons.
For those who can’t use the toilet alone, a full-gender toilet “solves so many problems,” Pile said.
(In addition, Pile said cost savings by building unisex facilities to replace traditional single-gender toilets are important, and six unisex toilets for the disabled are for men. 25% less space than building three separate toilets for women. Association architect.)
But back on our trip. Can I find a family restroom at a restroom or gas station? When I called first and asked for an answer, I found that it was an unknown area.
Caltrans’s handy QuickMap website and app contains information about highway rest areas, but not details about single stall or gender neutrality. Even Caltrans spokesman Michael Comeaux had a hard time finding the answer.
Conclusion: Some are and some are not, and there is no way to tell until you get there.
According to Como, the state recognizes the usefulness of gender-neutral family toilets and has been renewing breaks since early 2000, but the process is slow due to the high cost of building new facilities.
Meanwhile, Caltrans added a sign to restrooms without family toilets that “an attendant of the opposite sex may accompany a disabled person.”
In other words, don’t be shocked to see me taking my husband to a ladies’ room stall.
4th place: Get there as soon as possible
Travel is an additional cognitive challenge for them and their caregivers, as people with dementia are confused about everything, including where they are. If you want to make a road trip, we recommend choosing one specific destination to minimize toilet and dining stops.
Spontaneous side trips increase anxiety for the husband as it is a new situation that the husband has to deal with. What used to be happy is now horrifying and disoriented. We made a beeline to our Washington destination and saved a small adventure another day.
It seems that familiar items in the car were also useful. In this case, his favorite playlist, a few books, and two dogs snuggling up next to him while traveling.
While in Washington, we were fortunate enough to stay in an old house. He no longer recognizes homes and streets, or even our friends and family, but we have lived in that home for over 20 years. At one subconscious level, he probably seemed comforted when we were there.
If you are with friends or family, make sure they understand the situation. Sharing a space with someone who is crazy about dementia can be very stressful.
3rd place: plan, plan, plan
Choose a route in advance and plan where you will stay.
Please book a room and inquire about access. Do you have to walk a lot of public space to reach your room?
Once inside, it closes the door. Know that using a chain is not enough, as you learned in a single trip when you stayed at an old-fashioned motel with a room facing the parking lot. At midnight, I woke up to see my barefoot husband open the door and set foot on a winter night. When asked what he was doing, he said he was looking for a bathroom.
I learned to put bulky wrinkled items such as chairs in front of the door (a tote bag full of snacks is good). It’s not absolutely certain, but moving all those items is discouraging and noisy enough to wake me up before he opens the door.
I brought a lot of snacks. The trick is to stop hunger until you stop at night and then eat properly in your room.
If your hotel does not have room service, check your takeaway options before you arrive (note the closing time) and have your meal (and probably liquor) delivered to your hotel.
2nd place: Bring friends
Having a support person with you makes all the difference between a clenching journey and a tolerable journey. Driving for two days with a friend and an unhappy husband wasn’t a laugh, but it’s a blessing to have someone who can do the interference and is good at counting up to 10.
Choose a friend who has a sunny and compassionate tendency. This is not the time to bring someone to support and feed your often justified needs. Your companion with dementia also needs sympathy.
I was worried that I might have too many questions, but my friend told me that I was looking forward to talking while driving. Don’t be afraid to ask questions.
But one relationship tip: If you’re traveling with a “helper” friend, book a suite or a second room to ensure privacy and rest.
1st place: Count up to 10
Full Disclosure: I am not a natural caregiver. I’m impatient, so my motto is “count up to 10 and before and after”. I keep repeating it, because otherwise I would start screaming.
Nobody chooses this path, but my husband and I do it together, at least as long as I can manage it, whether I like it or not.
So yes, travel is possible. Find and remember your own patience mantra: seeking the kindness of a stranger is not shameful — and a lot of help from your loved ones and friends.
According to the US Centers for Disease Control and Prevention, an estimated 1 in 9 Americans over the age of 45 reports “subjective cognitive decline.” Dementia is becoming an increasingly real reality for many traveling families.