Traveling in Dementialand

I’ve got a bunch of travel planned in the next month. Carbondale. Lake Geneva, Wisconsin. Atlanta. Indianapolis. Chicago. Those are all work-related trips, although I am certainly not opposed to turning them into dual-purpose business/pleasure adventures. I can find a winery anywhere, folks. I sniff them out like my dog sniffs out Doritos wrappers at the park.

If my math is right, I’ll be spending about almost half of the next month in a hotel. Well, several different hotels and one dog-friendly AirBnB near a lake that I’m super excited about.

I know there are plenty of people who travel more than I do. There are people who have jobs that keep them on the road almost every week of the year. Many of these people thrive living the road life…and maybe it feels like home to them. But I can’t relate.

Although I enjoy travel, I also feel a bit off when I’m on the road. I don’t sleep well. I wake up and it takes me a few seconds to remember where I am. I eat differently than I do at home, and my stomach gets mad at me. Staying in my routine isn’t possible. Sometimes I don’t get my workouts in, and that affects my mood. I always have just a little bit of anxiety about what I’ve forgotten to bring and might have to seek out–even though the pair of emergency black pumps I had to buy at the last minute at Target a few years ago have been my go-to heels ever since.

Twice in the last year, I have left my hotel room for the day and come back at night with absolutely no memory of what room I was in. The last time this happened, I went up to the hotel desk with a horrified look on my face.

“Lose your key?” the hotel employee asked.

“I have a key,” I said. “I have no recollection of what room that key goes to.”

Sometimes I can be kind of a mess when I travel.

Recently I spoke with a woman who is living with early-stage dementia. We had a conversation about how great it is to travel….and how great it is to get home after traveling. She related to my feelings about being “on the road,” and she told me that these feelings have only intensified as her dementia progresses.

Travel has become more stressful. The unfamiliarity of hotels, AirBnBs, airports, and Ubers breeds anxiety. She just finds herself frazzled and on edge when on the road.

Her husband is a great guy, and he wants to give her the world. By giving her the world, I mean take her on her “bucket list” trips–to Australia, Scotland, and the Grand Canyon.

Those trips would have excited her a few years ago, but now just the thought of planes, trains, hotels, and subways make her shudder. Yet, she appreciate that her husband wants to take her to the places she’s always fantasized about visiting.

“But I guess I can do it,” she said. “I won’t have a break down or anything. I can keep smiling and pretend it’s okay even if it gets bad. I don’t want to hurt his feelings.”

People with dementia are pretty amazing like that–and I don’t necessarily mean that in a positive way. They can smile and laugh when they are anxious, uneasy, and terrified. Sometimes they don’t want to upset things. Sometimes they work really hard to try to make us forget they have dementia.

I remember visiting with a friend whose husband had Alzheimer’s a few years back. Their daughter was currently living in South Africa doing missionary work. My friend told me that she wanted to take her husband to visit because she knew their time was limited. She talked about buying plane tickets for a couple months in the future. I wasn’t sure what to say.

Her intentions couldn’t be better. However, I knew that it was unlikely that this trip would be successful considering some of the symptoms her husband had been experiencing.

“I just feel like if we don’t go now, we won’t get a chance to go,” she told me.

I tried to gently guide her to consider some of the challenges of a long flight followed by a long train ride. I mentioned that it might be overwhelming for him to spend time in an unfamiliar environment. I told her that I realized her husband was using a wheelchair sometimes, and I wasn’t sure how accessible this region of South Africa might be.

She said she really wanted him to have an opportunity to see the meaningful work their daughter was doing.

There are times when I am way too blunt with people. And there are times when I am not blunt enough. Maybe this was a time when I was not blunt enough. Or perhaps it wasn’t my job to say, “Your husband doesn’t remember he has a daughter…I don’t know if a trip to another continent to see the difference she is making in the world is the best plan.”

But I didn’t push it.

She did buy two plane tickets. And two train tickets. He seemed increasingly confused as the date approached, so she invited her son to come along for support. She bought another plane ticket. Another train ticket. She made hotel reservations.

About a week before the trip, her husband became agitated and ended up in the emergency room. As it turns out, he had a urinary tract infection. She decided she couldn’t take him to South Africa.

If you are looking for a positive–which I was–the son did end up going and reconnected with his sister with whom he had not been close. I didn’t ask how much money they were out on the cancelled flights, train fares, and hotels.

I saw her a few months later. Her husband had declined and now lived in a nursing home.

“I was a real idiot thinking I could take him on that trip,” she said.

She wasn’t an idiot, of course. It was her love for him and her desire to give him this gift that made her overlook all the reasons why it wouldn’t work.

Please don’t misinterpret my message. I am not saying that people living with dementia shouldn’t travel. There are plenty of people with various types of dementia enjoying trips all around this world of ours. However, sometimes we need to reconsider what a person needs in order to be successful.

Maybe a long road trip isn’t ideal. Perhaps you could drive four hours a day for three days instead of driving 12 hours in one day. Someone who used to enjoy flying might now be stressed out by security procedures and being “trapped” on a plane for hours. Is a different mode of transportation more appropriate? How can you modify your travel plans to make things less stressful for everyone? Of course, there is a time when the anxiety of travel may outweigh the benefits of going on an adventure.

And when that time comes, recognize that a “stay-cation” might be the best option.

 

 

 

 

 

 

3 thoughts on “Traveling in Dementialand

  1. This is helpful set of things to consider – our lives are working really well now that there is a routine going, but we both think of how refreshing travel can be. The idea of variety is great, but the reality is that variety is also becoming very challenging, for different reasons, for both of us.

    More than half the fun of travel turns out to be anticipating and planning, and then reviewing and remembering afterwards. Both of these are impossible now that memory impairment prevents both anticipation and recall. We could go to all the work of going on a trip, only to get home and a day later spouse would say, “Why don’t we go on a trip?”….

    So, shorter is now better. We’re specializing in day trips, and even those are getting to be closer to home. We went through several major trip plans in former years, only to have them collapse at the last minute just like they did for the woman in your report. Only in retrospect is it evident that memory impairment was at work even then.

    Thanks for your blog, Elaine – it’s great!

    Like

  2. Thanks for this … I’m thinking that driving to Oregon might be a bit too much for my husband, but flying and renting a car at the other end might be the wise thing to do.

    Like

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