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Travel as companion to person with Alzheimer's/ dementia

Travel as companion to person with Alzheimer's/ dementia

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Old Dec 11, 15, 7:27 pm
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Travel as companion to person with Alzheimer's/ dementia

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.

Last edited by JDiver; Aug 3, 16 at 9:14 am
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Old Dec 11, 15, 7:43 pm
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My father, Fred Spira, had Alzheimer's for almost a decade.

It was diagnosed fairly late (the diagnosis of Alzheimer's was far from perfected in the late 1990s) and it was a difficult journey.

It sounds like your wife has been living with the disease for a while now and you know what to expect, but if you ever want to talk, let me know.
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Old Dec 11, 15, 9:12 pm
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Thank you for the great offer, jspira!

Yes, it has been a while, and I well know where this path leads. It's different for everyone, but I've had some people with Alzheimer's in my life, friends, my godmother - and now "the German Doctor" (Herr Doktor Alois Alzheimer) has barged into my house and resolutely taken up residence.

We're "out" with this, because how else will we do what we can - in this instance we can't stop the disease but we can try to educate others and attempt to diminish the stigma. And we live our lives as best we can, until one day we can't. For now, while we can, that includes travel in our mutual joys.

(And I was a customer of Spiratone, the innovative photographic accessory company started by Fred Spira. It's a small world...)

Last edited by JDiver; Jan 26, 16 at 9:16 am Reason: Add
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Old Dec 11, 15, 11:27 pm
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Originally Posted by JDiver View Post
Thank you for the great offer, jspira!

Yes, it has been a while, and I well know where this path leads. It's different for everyone, but I've had some people with Alzheimer's in my life, friends, my godmother - and now "the German Doctor" (Herr Doktor Alois Alzheimer) has barged into my house and resolutely taken up residence.

We're "out" with this, because how else will we do what we can - in this instance we can't stop the disease but we can try to educate others and attempt to diminish the stigma. And we live our lives as best we can, until one day we can't. For now, while we can, that includes travel in our mutual joys.
I've dealt with that dreaded disease both at work (inpatient work in a major hospital) and my family. Currently I spend time with someone with a related condition. One thing that has changed in the past 30 years is now the more knowledge specialists emphasis nutritional as a tool to support memory as long as possible. Have physicians counseled you on it?

Kudos to you for spreading the word and helping your wife to have new memories to treasure as long as she can. After my Dad's cancer diagnosis, he and my Mom traveled as much as they could, to see distant family one last time and perhaps to give Dad a chance to cross a few things off his unwritten bucket list.
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Old Dec 13, 15, 4:22 pm
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Originally Posted by CDTraveler View Post
I've dealt with that dreaded disease both at work (inpatient work in a major hospital) and my family. Currently I spend time with someone with a related condition. One thing that has changed in the past 30 years is now the more knowledge specialists emphasis nutritional as a tool to support memory as long as possible. Have physicians counseled you on it?

Kudos to you for spreading the word and helping your wife to have new memories to treasure as long as she can. After my Dad's cancer diagnosis, he and my Mom traveled as much as they could, to see distant family one last time and perhaps to give Dad a chance to cross a few things off his unwritten bucket list.
I'm sorry you've had to deal with this issue.

Nutrition? Definitely; we are working on the nutrition aspect of this. The other thing that has changed in thirty years is easy access to information- though the Internet must be used judiciously, because there are lots of sites willing to sell one snake oil.

My wife still knows she's missing one country from her "begins with 'I'" list*. At this point, we still have Iceland planned for her birthday - on a small cruise ship she knows and loves, and where some of the crew will recognize (and coddle) her.

Thank you for your kind words.

*Iceland, India, Indonesia, Iran, Iraq, Ireland, Israel and Italy - she has been to all but Iceland, which is good - because I'm certainly not taking her to one of those in particular, and others are distant and more demanding for travel.
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Old Dec 13, 15, 7:56 pm
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JDiver, thanks for your openness and for sharing your strategies with the community. It's great that both you and your wife are flexible enough to recognize that traveling is still possible, even if it has to be done differently. I raise my glass to both of you.
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Old Dec 14, 15, 9:58 am
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Originally Posted by JDiver View Post
Nutrition? Definitely; we are working on the nutrition aspect of this. The other thing that has changed in thirty years is easy access to information- though the Internet must be used judiciously, because there are lots of sites willing to sell one snake oil.
You're right, there are a terrifying number of quacks on the internet. The person I was referring to is under the care of a neurologist at a major teaching hospital; definitely not self medicating from the web. The neurologist is a bit "out there" as in ahead of his colleagues in thinking diet/supplements make a difference to memory, but everything he's recommended has made a difference, some more significant than others.

Iceland is high on my personal bucket list. I hope you have a marvelous trip.
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Old Jan 12, 16, 5:20 am
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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.
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Old Jan 12, 16, 8:48 am
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Thank you, JDiver, for sharing this so openly and generously. Your post is a great resource.

My mom passed away from Alzheimer's this past July. She started traveling later in life and truly enjoyed it. Three years ago, we took her on one last trip to Philadelphia to visit family. She was early stage 4 at the time, and it required a lot of the thought and planning that you detail. Her gait was pretty slow so we got wheelchair service in the airport. Everyone, from TSA to the flight attendants, were very kind and helpful. The trip and visiting family meant so much to her that the logistical challenges were more than worth it.

Kudos to you for your efforts in facilitating this source of joy for you and your wife as long as possible. And I echo jspira's offer - please feel free to pm me if you ever want to chat.
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Old Jan 12, 16, 9:06 am
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Originally Posted by JDiver View Post
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 detai
  • 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...

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.
I do the exact same things with my mom. Caregivers think alike!
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Old Jan 12, 16, 9:37 am
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Your post moved me to reply although for years I've only lurked (and learned) here! As a psychologist, I'm passionately aware of the tremendous difference a caregiver's attitude can make in the progress of the disease and the quality of life. Your wife is blessed to have you, and you are blessed to have the great gift of knowing what an incredible difference you are making, as well as having many experiences and memories to enjoy.

I know you said "More to come" and I'm looking forward to that. I would be most interested to hear more about the non-flight parts of the trip---managing the actual visit itself, the hotel, the sight-seeing, etc. I know this is FlyerTalk, but we're all flying somewhere and I'll bet your insights into managing the land portion will be both appreciated and appropriate, no?

You are in my thoughts.
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Old Jan 12, 16, 7:31 pm
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A difficult process to live through, and she is highly reliant on you so congrats to you. Great of you to share with FT.


What have been the implications for travel insurance / exclusions etc? Might be worth considering or sharing if you're happy to do so.
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Old Jan 12, 16, 7:50 pm
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A tip of the hat to you. And many thanks for taking the time to write such a thoughtful post.
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Old Jan 13, 16, 8:54 pm
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Well my last effort seems to have vanished...so i will try again.
My 93 year old mother had show signs of cognitive impairment...I witnessed repetitive almost OCD type behavior, rummaging/inventorying drawers and cupboards, unplugging things, forgetting to not put metal in the microwave.. forgetting to get an Rx filled; forgetting to pay the health insurance...yet she was remarkably functional in many ways. She could still fix some food, use a cake mix, do laundry, volunteers.
Even as a social worker, it came as a surprise to me...
She and my alert 98 year old father (he drives, volunteers, etc) were going to visit my sister in MCO last month. I did what I could when making the arrangements. I provided a brief written itinerary. Made sure to get a mid-day non-stop flight.

I felt it was okay to let her pack on her own...especially since our day to day relationship has been historically somewhat antagonistic. For at least two years, I lived in a fog, and felt her regularly all but turning the refrigerator off was out of spite, until I realized it was a cognitive change.

When they got to FL, she wore the same thing multiple days and wanted to go home. My sister was shocked I would let them even travel, but she was so functional in her own environment, neither of us was aware of what could happen once she was out of it. She wanted to go home, and it became her mantra. Wherever they went, it was never for very long, not as long as 2 hours before she would say that. Can you imagine how overwhelming DisneyWorld would be? Yet they were there for a couple hours...and although initially things were so challenging (she thought they had been there a month) that my sister was looking into a return flight...she discovered that saying they were going home the day after tomorrow worked.

When they went to a restaurant she was unable to order....yet going to a familiar chain restaurant, like Olive Garden, she could.

I doubt they will be able to travel again, considering the upset...but I so appreciate the card idea, to explain.

BTW, Southwest has one of the most easily worked wekbsites for those with disabilities...I was easily able to indicate they were both hearing impaired, but hesitated since she is so aware and sensitive, to indicate there were cognitive issues, and I was afraid it might show up on the boarding pass. She was riled up on the return even with the word disabled, which assure pre--boarding. Also learned that one should make sure and check the person's ID before going to the airport...she had not packed hers...and although the crew at CAK was wonderful and allowed her to go with a credit card and picture ID, she was frisked on the way home at MCO.

May the force be with all of us who care. And bless those who have been married to the same person 50+ years and the love still grows...in sickness and in health....
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Old Jan 19, 16, 7:43 pm
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Travel as companion to person with Alzheimer's/ dementia

We love you and your wife of 50 years JDiver.
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