Traveling With a Companion Diagnosed With Dementia or Alzheimer’s Disease

y heart sank when I heard the news about the wife of FlyerTalk member JDiver pertaining to the diagnosis of his wife being in the early stages of Alzheimer’s disease. We had not seen each other in approximately a year or so; and when he came up to me to say hello, he revealed to me that their traveling days were likely numbered due to the diagnosis.

I kept the information he divulged to me in the strictest of confidence, of course. Every time I saw JDiver and his wife, I noticed how happy they were as they led an idyllic life of travel to many places around the world — usually on their terms…

…but when I saw the public posting of this personal situation on FlyerTalk, I thought it courageous for JDiver to post this information about his wife. Knowing him personally, I know that JDiver is not only seeking additional information which could potentially be beneficial to his wife; but he is also sharing the news in the hopes of helping fellow FlyerTalk members who are experiencing similar circumstances.

Traveling With a Companion Diagnosed With Dementia or Alzheimer’s Disease

The following is what JDiver posted on FlyerTalk in its entirety with his own words.

I actually didn’t want to learn about this, but my wife (fifty years next April) has Alzheimer’s disease. We both love to travel: we met in 1965 on a day tour bus to Kamakura and Enoshima, out of Tachikawa Air Force Base in Japan’s Kanto Plains out of Tokyo. She still reacts enthusiastically to travel — but at stage three borderline four of the classic stages of Alzheimer’s disease, we’re changing the tempo, destination and modus of travel to accommodate this type of dementia.

The basics: Alzheimer’s disease is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills, and eventually the ability to carry out the simplest tasks. Alzheimer’s is the most commonly identified cause of dementia.

At this stage of Alzheimer’s disease, the symptoms include:

Friends, family or co-workers begin to notice difficulties. Doctors may be able to detect problems in memory or concentration. Common difficulties include:

  • Noticeable problems coming up with the right name or word
  • Noticeably greater difficulty performing tasks in social or work settings
  • Forgetting material that one has recently read, heard or experienced
  • Losing or misplacing objects, including valuable or important objects
  • Increasing trouble with planning or organizing (can’t handle details)
  • Forgetfulness or imprecise memory of recent events
  • Impaired ability to perform challenging mental arithmetic — for example, counting backward from 100 by 7s
  • Greater difficulty performing complex tasks such as paying bills

 

Part of what changes is what we call our “executive function”, our ability to look forward, plan, make selections, use logic, make informed decisions. This becomes at times “executive disfunction”, meaning she could look at a menu for 30 minutes and still be incapable of making a decision, or not being able to select and pack — and then become frustrated and upset, making such a task virtually impossible. There’s a marked stress and discomfort caused by sudden change.

So to start with the actual travel, we now choose to move about less and focus on a “pied a terre”, whether it’s lodging for a few days we base ourselves or a small cruise ship where our cabin is our base. On a bad day we can remain in the comfort of our cabin and even order in if needed. (We like Windstar Cruises’ newer ships now, as the cabin is a suite with more space for different activities.)

I’m the one who sorts and packages her medications (since the day they “didn’t look right” and she started sorting them incorrectly, using those twice a day compartmented boxes) and of course they’re in our carry on bags, with a list with prescription info and chart for taking them. I’m also the subtle minder to be sure she takes them. I also know which medical facilities will be accessible to us as we travel, and on the ship ~200 pax) there’s an infirmary and a general practitioner aboard.

For difficult occasions, I carry a card I can show or give that essentially says “My spouse has Alzheimer’s disease and is hard of hearing. Please direct your questions to me.”

For flying, I search for more direct flights with easier transit and connections (e.g. avoid MIA and inter-terminal connections, ORD in winter and summer storm season when flight changes are more apt to occur, etc.) and look for greater comfort — two adjacent seats in discounted Business or Premium Economy, preferably where there are only two, not three or more, seats together.

At the airport we try to arrive with printed boarding passes, and use roadside checkin with checked baggage – the “Skycaps” are generally pretty knowledgeable and helpful, and we avoid the scrum at kiosks and ticket counters. When possible, we use trusted traveler programs (Global Entry, TSA PreCheck, etc.) for easier security transit. I may have to verbally tell the agent my wife has Alzheimer’s disease and is hard of hearing or show the card. (The stigma and lack of awareness associated with Alzheimer’s disease sometimes makes it easier for the agent to respond and alter behavior because of the “hard of hearing” — which is true, and hearing aids have now become too troublesome to use.)

Whilst walking I have her next to me, or in front of me. If she’s behind me if she slows or gets distracted we can become separated, which raises a lot of anxiety. I “preview” where we are, what we’re doing and where we’re going. Keeping her informed keeps her calmer and makes her feel more in control.

At the gate area, we arrive early and find at least one seat that is close to the gate or where she can clearly observe what is going on. I speak to the Gate Agent and request pre-boarding. It’s much easier to settle my wife in her seat and deal with carry-on bags and avoid the boarding scrum, which unsettles her with the crowds, number of anxious people milling about and contagious stresses.

In flight, she’s mostly OK about flying so it’s about interpreting between my wife and the Flight Attendants. Sometimes if things go awry — lateness, duversions, etc. I have to calm her, explain briefly and simply what’s happening and maintain confidence in my demeanor and voice.

I begin preparing her for arrival in advance so she’s not concerned about the flurry of activity . Once we arrive and have our personal gear in tow, we move aside near the gate, regroup and briefly go over next steps. If we have checked baggage I’ll look for somewhere she can sit whilst I recover the baggage and where she can see me from (and where I can also keep an eye on her, though she’s pretty good at not wandering if she’s sitting.

At immigration and customs we stay together. Most of the time families are allowed to process together; if there’s any issue, I tell the agent what is going on (or show the card I mentioned).

The day we can’t travel will come, but we’ve some albums and photos to remember as possible, with shared moments. As long as we can…

More to come…

Summary

Feeling rather helpless despite my personal offer to assist JDiver in any way I possibly can, I thought it was important for this information to be shared. After all, I am no expert pertaining to dementia or Alzheimer’s disease — nor do I have any significant experience with which I can recall, and I suppose I should consider myself fortunate about that — so I am not knowledgeable about this topic and cannot impart any useful information myself.

I have posted articles pertaining to death in the past — such as this one — not because I am a morbid person; but rather because I am well aware that my days of traveling unencumbered will someday be curtailed, limited or halted altogether for whatever reason; and while death will ultimately be the reason, illness or disease can become a contributing factor. This is why I try to travel as much as I possibly can. Travel is a passion for me, not a game or a hobby; and to lose the ability to indulge in that passion one day can be rather intimidating.

My hope is that you and other readers of The Gate will share thoughts and experiences related to traveling with a companion who has been diagnosed with dementia or Alzheimer’s disease; and that we can venture towards seeking solutions and answers together.

In the meantime, my offer to assist however I can still stands, JDiver — and thank you for sharing such a highly personal story. This article is dedicated to you and your wife.

Photograph ©2009 by Brian Cohen.

7 thoughts on “Traveling With a Companion Diagnosed With Dementia or Alzheimer’s Disease”

  1. Mary M says:

    Thank you for sharing. I just cancelled my dad’s first trip to Europe (with my brothers and me) as his dimentia has progressed to the point that he doesn’t like to be away from home for longer than a few hours. I was extremely disappointed. It definitely makes me more aware of my own potential loss of ability to travel and treasure the trips I can take now.

  2. Garrett says:

    I just lost both of my remaining grandparents over the last 10 days. One was 100 and mentally very fit. His body, however, was 100 years old and wasn’t able to continue it’s duties. The other was 90, and while very physically fit, was suffering from dementia in the form of short term memory loss (along with many of the other difficulties with the tasks and so on). My grandfather (100) and my grandmother (90) both travelled extensively throughout their lives. I’m so grateful that both of them had such amazing experiences. Both of them treasured their memories of trips all over the world, and took comfort in them when things started to get more difficult. I hope we all get to have those memories, and that they stay with us for the rest of our lives. My heart goes out to your friend.

  3. Garrett says:

    Its* 🙂

  4. Brooke Babcock says:

    When I traveled with my mother who had early Alzheimer’s, I had to remember not to let her out of my sight. Even when she went into the Ladies’ Room in an airport, I couldn’t tell her to meet me in the bookshop next door, as she wouldn’t remember. My father and I were regularly surprised when she became unable to do something she could do before. We had to remember to anticipate her next loss.

  5. Erica says:

    Thank you for this post. My dad had early onset Alzheimer’s and he and my mom traveled to see me often before he passed.

    I know it was difficult on my mom but I’m so glad that they were able to visit my family as much as they did.

    I think planning for extra time at the airport and doing whatever you can to stay calm and collected is important.

    They mostly flew on Southwest and you can actually indicate if a passenger has a cognitive problem on the reservation. I often did that when making their bookings and they never had to ask for preboarding.

    In my limited experience, it reminded me a lot of traveling with my young kids. There was more of a need to think through things that might happen (comfort foods or items, calming rituals, talking through the process, answering questions, finding a family restroom, what to do if a trip to the lav was necessary but not immediately possible).

    I have a strong belief that as long as a person is enjoying and able to travel, they should travel. Even though their memory of the trip might fade, yours won’t and hopefully you can make some wonderful memories.

    Alzheimer’s is such a difficult disease and my heart goes out to everyone who has had it touch their lives.

  6. W. Freudenberg says:

    I want to travel with my husband to join up with family in France. However, I am afraid of my husband wandering off in the airport when I go to the loo. How do people cope?

    1. Garrett says:

      @W. Freudenberg many airports have family bathrooms where he would at least be able to go in with you. It would be worth looking for the details ahead of time. I think CDG *may* but I can’t say that I’ve paid special attention to that detail. A quick tweet/facebook message with an inquiry should do the trick though.

Leave a Reply

Your email address will not be published. Required fields are marked *