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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 Jan 20, 16, 1:48 pm
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Thank you for the many kind comments. It's good / not good to hear from other care givers too - good because it's generally very up portion, not good because I'd not wish this on anyone. But for example, I've noticed a significant increase in fidgeting behavior - potential to drive me nuts! so I have to be aware of why she does and of my innate reaction and control it. But it becomes easier when she has something in her hands, and for the future I've even seen garments with "fidget" items firmly sewn on for "fidget-ready" items at hand. Thanks for the reminder, lalismom.

We've just returned from a trip - SFO-JFK-SJU return and a seven day Caribbean cruise on a small ship. "Self-insured", as it seems to be difficult to find insurance that will cover. We used to purchase annual trial policies, but those have gone up in price and want to know all pre-existing conditions (which they will then exclude from coverage).

Some companies claim they will include existing conditions; there's usually a condition you must purchase the insurance within a few days of your first payment. In our instances, the deposit was made some time ago, so no dice.

A few companies have "any cause" refundability. Viking River Cruises has such an offer with all river and ocean cruises purchased from Viking, iirc, now for travel during 2016!

Our health insurance is a Medicare Advantage program through Kaiser Permanente - Kaiser does reimburse for emergency and necessary medical care abroad, which Medicare doesn't. I carry MedEvac via DAN - Divers Alert Network - because it's cheap with membership, doesn't change with age nor condition, includes much more than diving.

Medication and taking it properly is an issue even at home. I made it easier by doling out the day's medications into a one day "AM/PM" container that was always in one place - on the tray near the glasses and water carafe in the cabin or hotel. A gentle reminder or question generally suffices, but if not a gentle "have you taken this afternoon's meds?" helped. And as visible as it was, it was easy for me to discreetly verify. Because she occasionally has false memories of having taken her meds, and can tell me in great detail how and when she took them - but it's never actually today's.

In the hotel, checking in with the ship etc. I find a comfy place to sit for her, ask her to watch our stuff and do the paperwork. If her presence is required at some point, I'll wave her forward. This still works. On tours,I tell her what's coming, and then tell her what's coming next, so she's calmer and not alarmed.

At times, I may have to tell someone "I'm sorry, my wife has Alzheimer's disease; she's having difficulty understanding you" or the like. The land bits are handled much like the air bits: I try to inform to prepare, I repeat what's coming up next, illustrate as necessary as we go (e.g. "Why are we stopping here?")

We chose to put her side of the bed nearest the bathroom and took our own night light (these are available for 220-240 VAC for locations that only offer such, and with different plugs, on Amazon.com and some others). That made it easier to see where the bathroom is - though once she began walking out from the bedroom into the parlor - where the door to the corridor is. (This was our 22nd cruise with the line, and we received a nice upgrade and dinner at the Captain's table - these made the trip more memorable for both of us.)

Yes, she's quieter and less participatory at these events with (fortunately just a few) strangers, but they don't know that's different than before. And we have no trouble if someone probes or thinks she may be being rude because she may not be responding saying something like "... has some hearing and dementia challenges, so..." Many respond warmly and with empathy (more have experience with dementia than is apparent, but the stigma sometimes makes people reticent - until they see it's just a disease, a condition a person has - and I honestly don't really care about the others - perhaps this can be a moment of learning for them.

In fact, I did tell a couple of ship's staff so they could assist with being aware she might benefit from assistance on occasion. And an advantage with a small ship aand line is several crew knew of us and are very kind and warm towards us. A nice bonus! E.g. if she goes to get food from the buffet, there's always someone who will carry it back - I can reduce my helicoptering and feel good she's not risking dropping a food plate, cuts, etc.

For air, ship or land, her toiletries kit is quite organized and we try to keep everything in the same place - but I have to stretch my awareness to her stuff now or it easily gets lost. Checklists... we use check lists, and a medium sized notebook for everything (plus her calendar book) for everything. (As a onetime pilot and a diver, I love checklists for consistency and reference.)

For the usual small stuff (beside mini-torch, ear rings, etc. we both use the pack flat travel trays like those sold by Magellans here Really useful.

We still travel light - nobody's really going to remember you've worn that shirt, trouser or blouse two nights ago in the other restaurant, and women can accessorize easily with a scarf, etc. And we're sure to take only washable items, wash out what we need to in the sink (shampoo makes a nice gentle detergent) ad buy the laundry package onboard. This has always been the case, and increased spots and spills make it even more convenient. And if she wants to wear the same thing, no worries, it's clean.

If / when the day comes she no longer feels stimulated by travel and wants to go / stay home, as lalismom writes, well, we will stay home. But we met traveling, she has actually traveled more than I - Iceland will be the final country beginning with "I", as she as visited India, Indonesia, Iran, Iraq, Ireland, Israel, Italy already and she still thinks about that last missing "I". You'd think she was a Flyertalker!

She has her favorite authors - and with her memory issues, two or three paperbacks takes care of it, because if it's a book she liked, she'll read it again - and again later. She misses our dogs, so I've photos of them on my tablet and smartphone, as well as of a few people who are dear to her (a couple of them have passed away, but she enjoys the picture and I don't feel I have to remind her that person is no longer with us).

And yes, she often repeats questions - my inner person wants to be exasperated, but I have to remind myself to meet Barbara where she is, rather than try dragging her to where I am (much less make her feel bad by carping) so it's easy to reply yet again. (I feel funny referring to her as "she" and "her" throughout, but I feel even stranger using her name here, so please bear with my quirkinesses.) if she hears or reads news or current events, of I tell them, an hour to the next day I may have to repeat - or hear them anew as she "discovers" them in a newspaper. This doesn't upset me in the least, because there's no cause for it to do so.

It turns out - we're both enduring changes and making adjustments; she's less aware of that, but it's how it is.

Last edited by JDiver; Jan 24, 16 at 1:07 pm Reason: Update
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Old Mar 23, 16, 10:21 am
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One thing that occurs with Alzheimer's disease (and begins early on) is the inability to process recent memories.

When you or I arrive home, for example, and hit the bathroom by necessity and leave the keys by accident, we retrace our steps. "Oh, let's see: when I came home I really had to go and stopped in the bathroom; I don't remember putting the keys in the basket on the kitchen counter, so I bet I left them in the bathroom." People with Alzheimer's probably won't remember they stopped by the bathroom, and they are unable to retrace their steps.

When we travel, we use those little folding travel trays to keep our pocket litter together. Most are pretty blah, and not very large. It's easy to overlook them, whether to drop items in or find the tray.

Last week, Red Oxx (baggage manufacturer oldpenny16 and I love) had a bright pink folding travel tray on offer (it was limited and temporary) as prizes on FaceBook. I wrote them about our situation (we're celebrating our 50th anniversary next month with a cruise) and asked to purchase one of these limited items; they sent me one gratis! Awesome people! (Link to Red Oxx travel tray page.)

My wife loves the soft, oversize VERY VISIBLE travel tray, and it proved most useful on our fourteen day cruise and hotel stays:
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Last edited by JDiver; May 17, 16 at 9:04 am Reason: Typo
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Old Mar 23, 16, 10:43 am
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Nice story, JDiver. Kudos to you for looking for methods to help and kudos to Red Oxx for gifting. What I like is that it is a technique she was already using, so familiar to her. You just kicked it up in visibility.
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Old Mar 26, 16, 10:36 pm
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Thank you, JDiver, for sharing this with us. I have, on occasion, mentioned that my father is ill. I have never specified: it's Alzheimer's. It has been a difficult road at times, but you don't love them any less. And I'll tell you something some people might find shocking: there have been moments when I have laughed. Out loud. Like when my father called Liz Taylor and Richard Burton "gluttons for punishment" for marrying each other twice, a fact he had forgotten.

I appreciate reading about your travels with your wife and how you are adapting and making it work for this new phase of your journey.
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Old May 17, 16, 8:27 am
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One thing we found helpful on our very pleasant, successful small ship cruise was use of a lanyard. I searched eBay for a colorful, distinctive lanyard and purchased two. On the ship, I had Réception punch holes at one end of the cards, then suspended them from the lanyard.

The advantages of a distinctive, colorful lanyard (worn by both):
  • No loss of a cabin key card - it's readily at hand. If you can't lose it in a pocket or putting it down somewhere and it's attached to you, you won't lose it.

  • If one person gets lost, they stick out and one can ask staff or cruisers if they've seen a man / woman "with a lanyard like this"

  • The lanyard makes the person with dementia or other condition more visible to ship staff / crew

  • Both wearing lanyards reduces possibility of stigma
We found several cruisers asked about and coveted the lanyards. I've replaced the eBay seller's photo with my actual lanyard and key card.
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Last edited by JDiver; Jul 26, 16 at 9:54 pm Reason: Update photo
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Old May 17, 16, 9:02 am
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Originally Posted by ysolde View Post
Thank you, JDiver, for sharing this with us. I have, on occasion, mentioned that my father is ill. I have never specified: it's Alzheimer's. It has been a difficult road at times, but you don't love them any less. And I'll tell you something some people might find shocking: there have been moments when I have laughed. Out loud. Like when my father called Liz Taylor and Richard Burton "gluttons for punishment" for marrying each other twice, a fact he had forgotten.

I appreciate reading about your travels with your wife and how you are adapting and making it work for this new phase of your journey.
Thanks for sharing, Ysolde; it can feel like a lonely path. There have been times for crying:

My wife has a Masters of Education, 38 years of teaching and was a reading resources teacher and has always been an avid reader. When she reads out loud to me, it's a hesitant second grader, sounding out syllables with occasional questions about what the word means. I don't cry in front of her; that would be disturbing to her equitability and upsetting, but after she goes to sleep I do.

There have been times for laughing, indeed, and times my heart leaps for joy at times because we're both alive and on the same wave length. Humor has helped us both. It's not cruel, laughing at someone humor, it's laughing with someone you love or at something that is truly funny, and often trivial.

I find her disease is a catalyst for my improving and further developing patience, ability to prioritize, life balance, coping skills, resilience - as much as I dislike this disease, my acceptance skills as well. IMO, there's no sense for using ghe General battle analogy so many seem to use for coping with an inevitably fatal condition; if this is a war, we can not win it and there are no weapons or tools that can help us do so. But we can win our moments, snatching moments of joy and winning small frays.
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Old May 17, 16, 9:52 am
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Originally Posted by JDiver View Post
Thanks for sharing, Ysolde; it can feel like a lonely path. There have been times for crying:

My wife has a Masters of Education, 38 years of teaching and was a reading resources teacher and has always been an avid reader. When she reads out loud to me, it's a hesitant second grader, sounding out syllables with occasional questions about what the word means. I don't cry in front of her; that would be disturbing to her equitability and upsetting, but after she goes to sleep I do.

There have been times for laughing, indeed, and times my heart leaps for joy at times because we're both alive and on the same wave length. Humor has helped us both. It's not cruel, laughing at someone humor, it's laughing with someone you love or at something that is truly funny, and often trivial.

I find her disease is a catalyst for my improving and further developing patience, ability to prioritize, life balance, coping skills, resilience - as much as I dislike this disease, my acceptance skills as well. IMO, there's no sense for using ghe General battle analogy so many seem to use for coping with an inevitably fatal condition; if this is a war, we can not win it and there are no weapons or tools that can help us do so. But we can win our moments, snatching moments of joy and winning small frays.
I know. This does not feel like a war, just a long, long, long marathon-like journey to nowhere , with everyone getting worn out, in very different ways. When my father still lived at home, and my mother was his primary caretaker, like you, she would wait until he was asleep to cry. Or she would cry early in the morning, when she was making their cafecitos before he got up, the morning ritual of a lifetime spent together, she the type of wife who always, always got up before her husband, and made sure to make his coffee just as he liked it.

On one trip that my husband and I took with my parents, we had a ritual to ensure my father took his pills. My husband (who takes cholesterol pills and vitamins) would always go to my parents' room after breakfast and take his pills with my father. My husband would tell my father it was because he needed company in the tedious process of taking pills. Really, it was just to ensure my dad was taking his pills each morning, and my mother got a break. She made sure he took his evening pills.
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Old May 17, 16, 9:57 am
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The new play "The Father," currently on Broadway with Frank Langella, would likely be of great interest to many people monitoring this thread.

The review I wrote in Frequent Business Traveler magazine should explain the subject matter.

Review: ‘The Father’ at Samuel J. Friedman Theatre
The decline begins slowly, indeed in many cases it is imperceptible for the first few years. It starts with forgetfulness, misplaced items, forgotten names. Then come changes in mood and personality, problems with recalling words, and asking for or repeating the same information over and over.

In my father’s case, I called it “The Great Unwinding.” For him, it took about ten years. For André, a retired Parisian gentleman played masterfully by Frank Langella in the Manhattan Theatre Club production of “The Father,” it takes roughly 90 minutes, the run-time of the play (performed without intermission), for his mind to unravel.

From the start, the playwright and Mr. Langella bring the audience into André’s declining mind. ...
<SNIP>
...
This link is to an online source to which I contribute and/or have a financial interest.
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Old May 17, 16, 12:18 pm
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Originally Posted by jspira View Post
The new play "The Father," currently on Broadway with Frank Langella, would likely be of great interest to many people monitoring this thread.

The review I wrote in Frequent Business Traveler magazine should explain the subject matter.

Review: ‘The Father’ at Samuel J. Friedman Theatre

...
This link is to an online source to which I contribute and/or have a financial interest.
Thank you for sharing! "The Great Unwinding" is a most appropriate title.
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Old May 17, 16, 12:35 pm
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Some resources I've found helpful:

Link to The Alzheimer's Reading Room, a nonprofit repository of information targeted at caregivers.

Link to Teepa Snow's website. Teepa Snow is an experienced teacher, resource person and caregiver. Her and her Positive Approach team's videos are very useful to caregivers, as are her online resources and three hour online course.

Facebook offers several private groups for caregivers and people with dementias. Log in, search and contact and administrators for access.

Link to Alzheimer's Association (there are resources, but the Association is undergoing some conflict and reorganization difficulties - some prior local chapters have gone independent, so search for local resources).

Link to Alzheimer's Foundation. More resources.

For further information on local dementia (including Alzheimer's) resources, look up your local Area Agency on Aging in the USA. They are required by their legal charter to maintain resource information and provide information and assistance services to the public.
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Old May 17, 16, 12:37 pm
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Originally Posted by jspira View Post
The new play "The Father," currently on Broadway with Frank Langella, would likely be of great interest to many people monitoring this thread.

The review I wrote in Frequent Business Traveler magazine should explain the subject matter.

Review: ‘The Father’ at Samuel J. Friedman Theatre

...
This link is to an online source to which I contribute and/or have a financial interest.
Originally Posted by JDiver View Post
Thank you for sharing! "The Great Unwinding" is a most appropriate title.
Thank you. The phrase came to me in the last stages of my father's illness.
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Old Jun 28, 16, 4:47 pm
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Dealing with airports etc.

At very complicated airports I may use wheelchair services. My wife's condition and age can make it extremely challenging, stressful and tiring when we have congested airports with lengthy, laberinthine transit for departure. This has been really useful at ORD (International Terminal 5 arrival, Terminal 3 departure), PHL, etc.

Another very handy thing that will be more and more helpful at US Ports of Entry as the system is adapted by more US airports is MCP - Mobile Passport Control. Essentially, you download an (iOS or Android app on your mobile and fill out information. When you arrive at immigration and customs, you're through quickly - faster than Global Entry in many cases. See https://www.cbp.gov/travel/us-citize...ssport-control

At some origins such as SFO or SMF, and at those arrivals, we don't bother (yet) with wheel chairs because departure isn't as complicated and don't require too much time (we do have TSA PreCheck) and on those arrivals we can take our time; not chaotic like MIA, ORD, PHL.

Last edited by JDiver; Jun 29, 16 at 4:39 pm
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Old Jun 28, 16, 11:48 pm
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Originally Posted by JDiver View Post
When we travel, we use those little folding travel trays to keep our pocket litter together. Most are pretty blah, and not very large. It's easy to overlook them, whether to drop items in or find the tray.
I actually have a pattern to make those trays. If anyone wants it I can forward it to you. Then you can make one in Day-Glo Orange, or Neon Green, or whatever color catches your eye.
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Old Jun 29, 16, 4:36 pm
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Originally Posted by CDTraveler View Post
I actually have a pattern to make those trays. If anyone wants it I can forward it to you. Then you can make one in Day-Glo Orange, or Neon Green, or whatever color catches your eye.
Wow! I'll bet several prople could benefit from that. Here, or in the Travel Products forum (you could then link from your post to the thread).

If you like and have the instructions as a PDF (or can convert), you can upload it into your post.

Additional Options >> Manage Attachments -> opens new page.

There, Choose File >> Upload and you're done.
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Old Jul 3, 16, 9:51 pm
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Originally Posted by JDiver View Post
Wow! I'll bet several prople could benefit from that. Here, or in the Travel Products forum (you could then link from your post to the thread).
Well, I used to have this pattern on my hard drive. However it appears the software gremlins erased it. Instead I can offer a link to another version of the folding travel tray - I'm posting the link rather than the pattern out of respect for the poster's ownership of her work.

These trays are good for more than jewelry and pocket change. These days I travel with too many small things related to technology - adaptors, power cords, USB flash drives, etc. and I keep a tray handy for them so they don't get left behind in a hotel room.

Some might have concerns about how to attach the snaps. You can either use old fashioned sew-on snaps, use a snap gun of some type to install them or have a luggage or shoe repair place put them on. I ended up buying a Kam Snaps device as I was making several of the trays for gifts.



[Since then I have used the Kam Snaps for quite a few projects, ranging from repairing the strap on my son's hockey helmet to putting them on a duvet and cover to keep the duvet in place. So if you're worried about spending money on something you might only use one, you might be surprised how useful it could be. No, I don't get a kickback if you buy one. ]
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