FlyerTalk Forums - View Single Post - Travel as companion to person with Alzheimer's/ dementia
Old Nov 3, 2017, 2:27 pm
  #64  
Dublin_rfk
 
Join Date: Dec 2014
Location: Haze gray and underway
Programs: UA 1K 2MM, HH Diamond, Marriott 'clink clink' Titanium
Posts: 1,782
Originally Posted by JDiver
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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