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Travel as companion to person with Alzheimer's/ dementia

Travel as companion to person with Alzheimer's/ dementia


Old Jun 15, 17, 6:13 pm
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My husband, Jim, is in mid-stage dementia, probably Alzheimer's but, since a concrete diagnosis only can be had Post-Mortimer ... we say dementia. He walks, talks, dresses himself and cares for his intimate needs. But his memory is shot and he has a bevy of new behaviors that are irritating (to me).

I retired four years ago (research manager) and we like to travel! But Jim is less enthused than he used to be and clearly has difficulty adapting to new surroundings. He does fine with airplane travel and airports although neither of us are thrilled about long-haul flights anymore. Our last one such was SFO to Fiji, thence to Laucala last September. We stayed there 10 days which made the long-haul travel acceptable. But we won't do it again.

We have taken two cruises but neither of us were enchanted so that option is off the books. Jim kept trying to pack us up the night before we were due at a different port.

We just returned from a week at Las Alamandas (south of Puerto Vallarta) and it went very well, Jim loved it.

In July we go to Maui for a week with our godson and his family. Expecting this to be somewhat dicey since it's a large, family-oriented resort, Grand Wailea. We have booked a cabana throughout so that should help. Suggestions as to making this stay easier welcome. Jim won't remember our godson much less his family.
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Old Jun 15, 17, 6:40 pm
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Hi, KatW!

JDiver has the best info on this, but here's my experience, FWIW.

My father has Alzheimer's (he is now fairly late stage). Years ago, when he was early to mid-stage, my husband and I took him with us on a trip to Europe. It went well, and he spoke about it for years after. Indeed, in going through my papers recently, I found a note he wrote during that trip, in Paris, about how beautiful it was, and how he planned to take my mother there one last time. That never happened . . .

In any event, here's what we did:

My father and my husband had a bit of a break together each morning, to plan the day, in my father's hotel room, while I fussed with my hair and make-up. My husband made a point of taking his vitamins with him to my father's room. This was the time when my father took his morning meds, and it gave my husband a chance to ensure he was taking them properly, without embarrassing him. They had a similar routine in the evenings, after dinner.

When we checked into a new hotel, my husband made sure my father was comfortable with the layout of his room, and that we had adjoining rooms, with a door making his room accessible to ours.

In every city we visited, either my husband or I (or both of us) stayed with my father at all times. However, we told him we needed his assistance: we needed his language skills, his knowledge of a museum, his taste in restaurants/food,his knowledge in an antique bookstore, etc. He was proud to be the "man of the hour," and to know that he still had useful skills.

This was in the late 'aughts, and he got confused as to the 311 rule, causing him to pack larger liquids in his carry-on than were allowed. He ended up losing all sorts of personal care products along the way (easily replaceable). This caused him great embarrassment. After that, we began to very gently and quietly assist him with packing his suitcase, ensuring that he had packed his liquids properly, that he had his meds in his carry-on, and that he always had his passport with him.

Whenever he got confused about things, we made sure not to make a fuss. He was so easily embarrassed, and lived in fear of public humiliation at that point. We did everything we could to let people know there was a memory issue, and we were there to help, without making him aware that we were letting others know.
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Old Oct 25, 17, 4:13 pm
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Great post, ysolde! Those are the very same things I find myself doing or trying to adhere to.

We're heading to the Canary Islands (named for dogs, not birds) next week for a transatlantic cruise (following what I've written above). My wife still likes to travel, though these days I find myself planning and doing the packing (I involve her and give positive feedback on what's appropriate, and use external reasons why not to take certain things - the weather, etc.).

So we're preparing just now, and came across a post in my Facebook feed from Dr. David Kramer, who has Early Onset Alzheimer's Disease.

He writes about attitudes and travel here. Or you can see the video here. From the initial page, you can listen to or download the podcast.
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Old Nov 3, 17, 3:27 pm
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Originally Posted by JDiver View Post
I actually didn't want to learn about this, but my wife (we've been married fifty years April 2016) 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 (now full four some five) 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, even eating and swallowing. 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 detail - loss of executive function)
  • Forgetfulness or imprecise memory of recent events
  • Impaired ability to perform even common 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. I always take our medical records on a USB thumb drive; many HMOs make these available for a very nominal sum ($5.00 in our case, and they will not accept your thumb drive to protect their database from potential security breaches from viruses, etc. on thumb drives).

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." (Now different card: see further on.)

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...

Preparation: I consult with my wife at different steps, reflect on her likes and dislikes; once we make a decision revisit the time frame and arrangements occasionally.

I begin discussing weather, places and the like at different times and ask what she'd like to wear and take. My framing is what's appropriate and what I know she likes. Make a list and begin to separate it out.
Quoted to refresh the thread and info.
Thanks for sharing and show that with a little planning Alzheimer’s doesn’t have to completely restrict your life and you can continue to share in your companion’s favorite activities.
I have used your sharing as a guide when traveling with the physically disabled.
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Old Nov 3, 17, 4:35 pm
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Originally Posted by Microwave View Post
Thanks so much for putting together such a thoroughly helpful primer, JDiver. As much to this community, you're a true asset to your lovely wife.
This times 10000!!! You Sir are a very fine person....
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Old Mar 30, 18, 12:35 am
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Jim and I have been traveling regularly since his 2012 dementia diagnosis. His is mid-stage dementia (thus far). It takes more planning on my part but works well; of course I do all the packing. Jim is 76; I am 69. We are fortunate to have sufficient funds in our retirement to travel well which makes everthing so much easier and reduces greatly stress on me.

Herewith the ways I make our travel easier:

-- Fly first or biz (sometimes this class gives preferential immigration access when abroad)
-- Avoid connections, sometimes unavoidable on longhauls (e.g., Fiji, Reykjavik, Mexican colonial towns)
-- Never rush, give ourselves plenty of time
-- Rule out entirely early a.m. flights and red eyes (except overseas)
-- Sit together (I know, obvious, right?!)
-- In Europe, I book a meet/greet service that meets the flight and escorts us through immigration and customs, and coordinates with our booked car service.
-- American Airlines offers at some airport their Five Star Service which is especially useful when making connections. Costs more, worth every penny. https://www.aa.com/i18n/plan-travel/...ivestarservice

-- We stay in upscale hotels
-- After check-in, I have a discreet word with management informing them Jim has dementia so, should they see him wandering around alone, to take him in hand and find me. So far he has not wandered but I know there will be a first time and I do need to sleep.
-- We avoid mass transit; much too difficult to manage Jim when I don't know what I'm doing or where I'm going. Too easy to get rattled and cranky.
-- We do only one major venue a day (museum, garden, castle, drive, etc.). We try to pair this with lunch or a picnic.
-- We make ample use of room service.

Our destinations have included France twice (Paris plus barging in the Loire and in Burgundy); Mexico three or four times a year; Fiji; Hawaii; Santa Fe (for the summer opera); Los Angeles; Quebec province; flying SFO/Barbados then cruising the Amazon embarking from Barbados; cruising the Western Caribbean, etc. This summer we are flying SFO to London Heathrow, then embarking on a cruise to Scotland, Norway (fjords!), Faroe Islands, Reykjavik, then home to SFO.

We live in the San Francisco Bay Area and sometimes get away to vacation rentals in Point Reyes, Wine Country, Sea Ranch, etc.

Welcome tips and tricks from others. We'll be traveling as long as we can. FYI/FWIW -- Jim's neurologist is delighted we travel. In case you have seen those pieces about traveling not being "good" for those with dementia. Well planned, not rushed, slow days -- works well.

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Old Apr 1, 18, 1:22 pm
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So inspiring - thank you!

I just stumbled upon this thread, and read it from start to finish, non-stop.

I don't know how to explain my reactions (plural, definitely).
I am in awe of your patience. You are both very fortunate to have had so many years together, and hopefully your travels will continue.

We are dealing with what is admittedly minor mobility problems (mine), and we've found a variety of ways to make suitable accommodations. When traveling, we always have a private tour/guide, so that I can rest "whenever", and also not worry about holding back other people. Or we determine in advance that there *will* be convenient places to rest without interfering with the others, etc.

And the wheelchair assistance at the airport has been invaluable. We made the mistake (once!) of believing the "it's not far" claim when a wheelchair didn't show up, and then we were stranded. At least DH was able to go search for help.
[And one of the few times I traveled alone, some time ago, but after surgery because of a medical emergency in another family member 'cross country... Well, one wheelchair attendant "left me" in a lonely location where "the electric cart" would pick me up. Except... they were ALL full, one after the other. I had allowed a long connection, but after almost an hour... almost entirely by myself.. I bit the bullet and dialed 911. I got the local state police, no surprise, and they were remarkably responsive to the situation. "All of a sudden" lots of assistance (and assistants) showed up, and I was treated almost like royalty (not that I know how that is, ahem) until the plane departed a few hours later.]

A few thoughts: About meds... We don't do this *yet*, but we probably will soon, as we both take what seems to be assorted meds with some sort of enhanced fertility or something... they just keep multiplying
There is a service (probably several) that will package your meds (also vitamins/non Rx items) in individual tiny ziplock type bags (each in order of use!) each labelled with the contents and time to be taken. It appears to be a roll... just tear the "next one" that shows through the little box/dispenser.
Thus far, our concern has been, as mentioned above, crossing international borders with a seemingly exotic selected of "pills". For now, we ask our pharmacy to give us the smallest size container for <x days' worth> of each med, properly labelled. We also carry copies of the original Rx plus a letter from the physician for any "questionable" meds, such as pain pills or injectibles.
When necessary (Japan comes to mind), we had some pre-arrival email exchanges, and we completed a variety of forms to get approvals. We also learned, for example, that we could each take 2 Epipens, but that one of us could not take 3, so we had all labelled appropriately.

I have finally convinced DH that it really IS okay if he ventures off to see something, and I wait behind. We both benefit from that, of course.

We are also planning, should such a time come, that we will bring along someone to "assist", so that "the other one of us" isn't too burdened. And as has been pointed out, sometimes *one* person cannot do it all... attend to "what needs to be done", while also making sure the other person remains safe and comfortable. Both of our families have histories of Parkinsons or Alzheimers, plus there is my physical condition, which seems stable... for now.

We've also adjusted our planned schedules so that we don't have tight connections, and we allow *plenty* of time to get to the airport. Usually there is some sort of lounge we can use in comfort, but if not, we just park ourselves right near the gate, and... relax...
And thanks to lots of awards/points, we now travel any long-haul flights in F or J. Shorter trips, Jet Blue is still hard to beat, with the extra legroom.

We are trying to take some non-cruise trips while we can, although we love cruises. Those do help, given that fewer "transfers" of various sorts are needed, obviously.

JDiver, it's so nice that you could find "floor plans" of cabins/suites on a ship that matches the set up at home.
But in case wandering becomes more of a problem, have you considered doing something like putting a couple of bells on the door knob of the door into the hallway? (I did that sort of thing decades ago, when backpacking with two little children; we didn't go far or fast, obviously! The problem that time, with a bell on the zipper of the pup tent front and back, was that every time a child turned over, the bells jangled. But that was the point, after all... It worked a bit better in hotels, so I didn't need to worry about "what if I sleep too soundly, and one of them wanders out of the room...)

I love the colorful and distinctive material used to hold the key-card. What a clever idea.
(I also *really* like the little folding travel tray, including for right here at home!)

Your renewal of vows was such a loving thought, for several reasons as you pointed out.

I look forward to reading about more of your travels, and also to learning more "handy hints" about traveling when there are extra "difficulties" of whatever type.

And yes, Best Wishes to you and Lady JDiver on what should be another anniversary approaching!

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Old Apr 9, 18, 3:13 pm
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Short-term memory loss, and the great difficulty in making new memories, is a hallmark of dementia. What this means for our travel is Jim's inability to figure out how he got where he is each day.

For example, in June we'll fly to London, then take the train to Edinburgh where we board a Windstar (only 210 passengers assuming fully booked) ship sailing over eleven days to Northern Scotland, Norway, the Faroe Islands and on to Iceland before flying home to SFO. For someone with dementia, this is a whole lot of to-ing and fro-ing that could cause confusion and anxiety. We have booked the largest suite which has a good-size balcony which Jim will love, good weather permitting.

Truth to tell, our usual travel entails flying non-stop to one destination and staying put for the duration. So the June trip will be challenging. Here's what I will do to forestall / ameliorate confusion for Jim.

-- Outline with highlighter on maps our route and all stops. Jim LOVES maps and it orients and comforts him to trace our journey.

-- Starting a week before outbound flight, remind Jim every day we will be flying to London on X day; the car service will pick us up at X time to drive us to SFO. Flying itself is pretty straight forward, I'll keep reminding Jim we're enroute to London where he has been many times before. Staying in a Thames-view suite at same hotel he loved the last time.

-- I know well the LHR immigration/customs routine upon landing. Because we are flying business class, we will have expedited access.

-- Driver meets us upon clearing customs, escorts to car, drives to hotel and, voila, London! We'll have tea and sandwiches and stay awake as long as we can before crashing. Neither of us rests well on red-eyes.

-- We have three days in London to recover from jetlag. No activities on Day 1, hang in hotel with room service, sights from our Thames-view suite. Theatre or concert evening of Day 2; Hatchard / Liberty / Fortnum & Mason on Day 3. Remind Jim each morning and evening that we flew from home to London. Show Jim route map morning and evening.

-- Next day, noon express train to Edinburgh, settle in hotel, take it easy. Remind Jim we flew to London, took train to Edinburgh. Show Jim map.

-- Board ship next afternoon. Settle. Explain itinerary with focus on where we'll be tomorrow. Show Jim map.

-- Each day of 11-day cruise show Jim map in the morning. We have booked easy group excursions for each of the six port stops but will skip or arrange private tours as needed. It's FINE to stay aboard and do much of nothing. Flexibility is key; not only for Jim but for me as well. Important I not get worn out and cranky.

-- Show Jim map. Taxi to hotel upon early-morning arrival in Reykjavik. Do something if we feel like it. By now we'll have been traveling for two weeks and will be on short tethers, Danger Time. Next day MAYBE go to Blue Lagoon if we feel like it. Or, should tethers prove too short, fly home nonstop (expensive option but that's OK).

-- Next day, show Jim map. Fly home to SFO on flight as originally booked which includes an inconvenient stopover in Montreal of seven hours.

-- Pick up Mr. Maggie from cat spa on the way home from airport in limo, then we are well and truly home.

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Last edited by KatW; Apr 9, 18 at 7:15 pm
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