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Travel as companion to person with Alzheimer's/ dementia

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Old Jun 15, 17, 6:13 pm
  #61
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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
  #63
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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
  #65
 
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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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