Travel as companion to person with Alzheimer's/ dementia
Jun 9, 2017, 2:17 pm
#47
Moderator: American AAdvantage
Original Poster
Join Date: May 2000
Location: NorCal - SMF area
Programs: AA LT Plat; HH LT Diamond, Maître-plongeur des Muccis
Posts: 62,948
There haven't been major changes to our travel, though there have been changes caused by the Alzheimer's disease.
Our last cruise - transatlantic from Aruba to Santa Cruz de Tenerife, and onward to Lisbon via the Canary Islands and Morocco - initially provided us with a challenge.
I had booked this trip last November and selected cabin 231 on Deck 5 as suitable for its orientation (see previous post). A couple of weeks prior to departure, we received an email from an "Inventory Specialist" congratulating us for being upgraded! "Your previously assigned cabin is no longer available, but that doesn't matter because your upgrade is confirmed!"
My BS meter pegged and I looked up our "upgraded" cabin, #321 on Deck 6 - a connecting cabin (wall section can be opened to the adjacent cabin - I reject these because one can often hear conversation etc. from that connected cabin), and the layout was 180 degrees from what we need for my wife's easier orientation. A call and I was told we had to accept the new cabin.
Google is our friend. I emailed the "Inventory Specialist" stating:, concisely but clearly, our needs and expectations:
I relied on some of what I've learned on FlyerTalk about effective self-advocacy: be dispassionate and succinct but include relevant data and facts, be clear (and reasonable) about your expectations. The email included:
Why we selected our previous cabin (needed a cabin with a specific layout - reasonable accommodation for a person with Alzheimer's disease who was fit to travel, but required some assistance in the nature of cabin layout); what we required (keeping it solvable).
A list of acceptable cabins. If on Deck 4, we expected the difference in cost to be given us in cabin credit (favorable to the cruise company); if on Deck 6 or a balcony cabin, the company would absorb the difference in cost as this was an involuntary change; I CC'd the CEO and Vice President of Marketing.
We were quickly notified our previously rebooked cabin was available to us, and we're given some additional compensation in the form of cabin credit (for extras such as laundry, shore excursions, etc.)
It turns out there was no "upgrade" at all - ALL passengers (only 40 of us) were "upgraded" at no cost to Deck 6 so they could refurbish and provide maintenance to all cabins on Decks 4 and 5. The "inventory specialist" just failed to read our SSR or OSI note in the booking stating our requirement for a specific cabin layout. (We met some passengers who were so pleased they had been so valued by the company they scored a "free upgrade"!
)
A couple of new additions to our lanyards, etc. described previously included a 220 VAC Euro plug night light for the bathroom (Amazon) and an empty smaller Odwalla bottle we could use to mix our daily veg and antioxidant powder in - our cabin steward put two glasses if juice in our fridge each night, we mixed in the morning. I also have found those paper cup caps they use in hotel's etc. useful for holding the medications about to be consumed - no more chasing rolling pills under the bed.
As for the meds, I call upon my teenage learned skills as a pharmacy assistant to make up sectioned containers for one week (it's easier to visually track if meds are being consumed or not), and thevrest are in daily a.m. and p.m. bags. I carry a list including prescriber and prescription numbers, and all eye meds are in an "eye kit" consisting of an airline amenity kit. I've never had problems with an airport or government agent asking for more.
Our HMO allows us access to our medical records summary, either online (print to PDF and carry, printed or on my tablet) or on a USB thumb drive so we have them available for the ship's doctor or landside medical facility.
We also prepurchase the Landry service - it allows us to pack much less.
Perhaos the best part is we celebrated our 51st wedding anniversary aboard, and invited seven other passengers we had met and befriended to join us. The Hotel and Dining Room Managers set up the Captain's Table for us and we had a memorable time on this, our 28th cruise on Windstar Cruises.
Our last cruise - transatlantic from Aruba to Santa Cruz de Tenerife, and onward to Lisbon via the Canary Islands and Morocco - initially provided us with a challenge.
I had booked this trip last November and selected cabin 231 on Deck 5 as suitable for its orientation (see previous post). A couple of weeks prior to departure, we received an email from an "Inventory Specialist" congratulating us for being upgraded! "Your previously assigned cabin is no longer available, but that doesn't matter because your upgrade is confirmed!"
My BS meter pegged and I looked up our "upgraded" cabin, #321 on Deck 6 - a connecting cabin (wall section can be opened to the adjacent cabin - I reject these because one can often hear conversation etc. from that connected cabin), and the layout was 180 degrees from what we need for my wife's easier orientation. A call and I was told we had to accept the new cabin.
Google is our friend. I emailed the "Inventory Specialist" stating:, concisely but clearly, our needs and expectations:
I relied on some of what I've learned on FlyerTalk about effective self-advocacy: be dispassionate and succinct but include relevant data and facts, be clear (and reasonable) about your expectations. The email included:
Why we selected our previous cabin (needed a cabin with a specific layout - reasonable accommodation for a person with Alzheimer's disease who was fit to travel, but required some assistance in the nature of cabin layout); what we required (keeping it solvable).
A list of acceptable cabins. If on Deck 4, we expected the difference in cost to be given us in cabin credit (favorable to the cruise company); if on Deck 6 or a balcony cabin, the company would absorb the difference in cost as this was an involuntary change; I CC'd the CEO and Vice President of Marketing.
We were quickly notified our previously rebooked cabin was available to us, and we're given some additional compensation in the form of cabin credit (for extras such as laundry, shore excursions, etc.)
It turns out there was no "upgrade" at all - ALL passengers (only 40 of us) were "upgraded" at no cost to Deck 6 so they could refurbish and provide maintenance to all cabins on Decks 4 and 5. The "inventory specialist" just failed to read our SSR or OSI note in the booking stating our requirement for a specific cabin layout. (We met some passengers who were so pleased they had been so valued by the company they scored a "free upgrade"!
)A couple of new additions to our lanyards, etc. described previously included a 220 VAC Euro plug night light for the bathroom (Amazon) and an empty smaller Odwalla bottle we could use to mix our daily veg and antioxidant powder in - our cabin steward put two glasses if juice in our fridge each night, we mixed in the morning. I also have found those paper cup caps they use in hotel's etc. useful for holding the medications about to be consumed - no more chasing rolling pills under the bed.
As for the meds, I call upon my teenage learned skills as a pharmacy assistant to make up sectioned containers for one week (it's easier to visually track if meds are being consumed or not), and thevrest are in daily a.m. and p.m. bags. I carry a list including prescriber and prescription numbers, and all eye meds are in an "eye kit" consisting of an airline amenity kit. I've never had problems with an airport or government agent asking for more.
Our HMO allows us access to our medical records summary, either online (print to PDF and carry, printed or on my tablet) or on a USB thumb drive so we have them available for the ship's doctor or landside medical facility.
We also prepurchase the Landry service - it allows us to pack much less.
Perhaos the best part is we celebrated our 51st wedding anniversary aboard, and invited seven other passengers we had met and befriended to join us. The Hotel and Dining Room Managers set up the Captain's Table for us and we had a memorable time on this, our 28th cruise on Windstar Cruises.
Last edited by JDiver; Jun 10, 2017 at 4:21 pm Reason: Typo and add
Jun 9, 2017, 10:32 pm
#48
FlyerTalk Evangelist
Join Date: Jun 2005
Posts: 38,410
As fir the meds, I call upon my teenage learned skills as a pharmacy assistant to make up sectioned containers for one week (it's easier to visually track if meds are being consumed or not), and thevrest are in daily a.m. and p.m. bags. I carry a list including prescriber and prescription numbers, and all eye meds are in an "eye kit" consisting of an airline amenity kit. I've never had problems with an airport or government agent asking for more.
Jun 10, 2017, 7:33 am
#50
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Join Date: Feb 2012
Programs: AAdvantage Executive Platinum, Delta Silver Medallion, Marriott Bonvoy Ambassador
Posts: 14,083
First, I want to say, Congratulations to Mrs. and Mrs. Diver!!! This thread continues to inspire me, fill me with love and gratitude, and remind me to enjoy each day, just as it is. You two are truly what many of us marrieds aspire to be. May your love continue to grow and bloom.
I'm sure Diver will answer for himself. I will say (as someone who takes both morning and evening pills), I keep two separate "Week of Pills" containers (one for mornings and one for evenings). It is easy enough for me to know which is which, based on the number of pills in each (more in one than in the other). If someone is taking more or less the same number of pills at each time of day, and/or pills that look substantially similar, this would not work out that well. Add to that the issue of confusion that is inherent to AD, and what works for me may not be the best solution for JDiver's wife.
I'm sure Diver will answer for himself. I will say (as someone who takes both morning and evening pills), I keep two separate "Week of Pills" containers (one for mornings and one for evenings). It is easy enough for me to know which is which, based on the number of pills in each (more in one than in the other). If someone is taking more or less the same number of pills at each time of day, and/or pills that look substantially similar, this would not work out that well. Add to that the issue of confusion that is inherent to AD, and what works for me may not be the best solution for JDiver's wife.
Jun 10, 2017, 7:40 am
#51
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Join Date: Jul 2010
Programs: AA
Posts: 14,727
Congrats on your anniversary! A few friends were on that sailing with you.
As to the pill containers, I understand about the use of the baggies versus the containers. I'm trying to get my aunt to switch to baggies as twice in the last few months accidentally dumped her day of week/time of day container and I've then had to pick up all the pills and re-sort them. At least if you drop a baggie, it's only one dose you are replacing or fixing. Also the baggies tend to take up a lot less space when traveling than other containers.
As to the pill containers, I understand about the use of the baggies versus the containers. I'm trying to get my aunt to switch to baggies as twice in the last few months accidentally dumped her day of week/time of day container and I've then had to pick up all the pills and re-sort them. At least if you drop a baggie, it's only one dose you are replacing or fixing. Also the baggies tend to take up a lot less space when traveling than other containers.
Jun 10, 2017, 1:05 pm
#52
FlyerTalk Evangelist
Join Date: Jun 2005
Posts: 38,410
I'm sure Diver will answer for himself. I will say (as someone who takes both morning and evening pills), I keep two separate "Week of Pills" containers (one for mornings and one for evenings). It is easy enough for me to know which is which, based on the number of pills in each (more in one than in the other). If someone is taking more or less the same number of pills at each time of day, and/or pills that look substantially similar, this would not work out that well. Add to that the issue of confusion that is inherent to AD, and what works for me may not be the best solution for JDiver's wife.
Jun 10, 2017, 3:45 pm
#53
Moderator: American AAdvantage
Original Poster
Join Date: May 2000
Location: NorCal - SMF area
Programs: AA LT Plat; HH LT Diamond, Maître-plongeur des Muccis
Posts: 62,948
Congrats on your anniversary! A few friends were on that sailing with you.
As to the pill containers, I understand about the use of the baggies versus the containers. I'm trying to get my aunt to switch to baggies as twice in the last few months accidentally dumped her day of week/time of day container and I've then had to pick up all the pills and re-sort them. At least if you drop a baggie, it's only one dose you are replacing or fixing. Also the baggies tend to take up a lot less space when traveling than other containers.
As to the pill containers, I understand about the use of the baggies versus the containers. I'm trying to get my aunt to switch to baggies as twice in the last few months accidentally dumped her day of week/time of day container and I've then had to pick up all the pills and re-sort them. At least if you drop a baggie, it's only one dose you are replacing or fixing. Also the baggies tend to take up a lot less space when traveling than other containers.
For our convenience, I take one large seven day pill box with AM and PM sections for each day of the week. That's what is easier for Lady JDiver to use, but taking several would require a lot of space in a carry-on (because we'd never check them). The rest I put into AM or PM marked Walgreen's (CVS' are not as durable) pill bags and refill the box weekly. She has convenience and what she's used to, we save significant space in packing.
(My apologies for using handles and not real names, but after being cyberstalked and threatened a few years ago, I'm protective of our privacy.)
Jun 10, 2017, 4:14 pm
#54
Moderator: American AAdvantage
Original Poster
Join Date: May 2000
Location: NorCal - SMF area
Programs: AA LT Plat; HH LT Diamond, Maître-plongeur des Muccis
Posts: 62,948
First, thank you for your welcoming words and comments.
A couple of other tips:
We love the transatlantic cruises. They're usually at less than capacity, so service levels are high; the ship has to reposition, with or without passengers, so a 14 day trip is often quite reasonable considering lodging, food and at least non-alcoholic beverages, enrichment activities, etc. On our small ships (capacity 112-310 passengers) they're quickly familiar, there's no regimentation and they're both easy to get around and welcoming (we're even welcome on the bridge).
The challenge is the airlines often charge ~250% the cost of a round trip for a one way ticket.
One way we've dealt with that is to use some of the airline miles and other points we've collected over the years for the transatlantic air portion, and pay for the USA-Caribbean port (usually AUA, BGI or SXM) as the airlines normally charge you 1/2 of a round trip for one-way travel in those instances.
The other is to buy round trips ex-Europe (e.g. AMS-LHR-SFO in May, SFO-DFW-MAD in November) covering two trips. These seem cheaper ex-Europe than round trips from the USA.
As well, some airports are less expensive than others - AMS was not only cheaper than BRU this trip, for some reason the ticket ex-AMS booked us into BA A380 First Class LHR-SFO instead of Business Class, and AMS (Schiphol) airport is a 1.5 high speed rail from BRU. Most flights originating in the U.K. would include the high Air Passenger Duty, CDG would charge us their "Solidarity" tax.
Within Europe we tend to use the usually excellent high speed (186-198 MPH, downtown to downtown, no ground trip's to airport's and extensive security carnival) where we can, and Low Cost Carriers when we can't. (Legacy European carriers have debased their product so much there's little reason to use them - e.g. British Airways have added two more rows of seats in their intra-Europe Airbus aircraft, so Seat pitch is now 29" - even in Club Europe / Business, one inch less than Ryanair and the same as Easyjet, iirc.)
A couple of other tips:
We love the transatlantic cruises. They're usually at less than capacity, so service levels are high; the ship has to reposition, with or without passengers, so a 14 day trip is often quite reasonable considering lodging, food and at least non-alcoholic beverages, enrichment activities, etc. On our small ships (capacity 112-310 passengers) they're quickly familiar, there's no regimentation and they're both easy to get around and welcoming (we're even welcome on the bridge).
The challenge is the airlines often charge ~250% the cost of a round trip for a one way ticket.
One way we've dealt with that is to use some of the airline miles and other points we've collected over the years for the transatlantic air portion, and pay for the USA-Caribbean port (usually AUA, BGI or SXM) as the airlines normally charge you 1/2 of a round trip for one-way travel in those instances.
The other is to buy round trips ex-Europe (e.g. AMS-LHR-SFO in May, SFO-DFW-MAD in November) covering two trips. These seem cheaper ex-Europe than round trips from the USA.
As well, some airports are less expensive than others - AMS was not only cheaper than BRU this trip, for some reason the ticket ex-AMS booked us into BA A380 First Class LHR-SFO instead of Business Class, and AMS (Schiphol) airport is a 1.5 high speed rail from BRU. Most flights originating in the U.K. would include the high Air Passenger Duty, CDG would charge us their "Solidarity" tax.
Within Europe we tend to use the usually excellent high speed (186-198 MPH, downtown to downtown, no ground trip's to airport's and extensive security carnival) where we can, and Low Cost Carriers when we can't. (Legacy European carriers have debased their product so much there's little reason to use them - e.g. British Airways have added two more rows of seats in their intra-Europe Airbus aircraft, so Seat pitch is now 29" - even in Club Europe / Business, one inch less than Ryanair and the same as Easyjet, iirc.)
Jun 10, 2017, 7:58 pm
#55
FlyerTalk Evangelist
Join Date: Jun 2005
Posts: 38,410
Lady JDiver requires several medications: In 2014 she developed pneumonia that went into sepsis and resulted in 10 days of sedation and ventilation in the ICU, followed by a lengthy recovery; that altered some organ functions, so several meds. As well, her glaucoma requires separate liquid medications we keep in an "eye and ear kit".
For our convenience, I take one large seven day pill box with AM and PM sections for each day of the week. That's what is easier for Lady JDiver to use, but taking several would require a lot of space in a carry-on (because we'd never check them). The rest I put into AM or PM marked Walgreen's (CVS' are not as durable) pill bags and refill the box weekly. She has convenience and what she's used to, we save significant space in packing.
For our convenience, I take one large seven day pill box with AM and PM sections for each day of the week. That's what is easier for Lady JDiver to use, but taking several would require a lot of space in a carry-on (because we'd never check them). The rest I put into AM or PM marked Walgreen's (CVS' are not as durable) pill bags and refill the box weekly. She has convenience and what she's used to, we save significant space in packing.
(My apologies for using handles and not real names, but after being cyberstalked and threatened a few years ago, I'm protective of our privacy.)
Jun 13, 2017, 5:06 pm
#58
Join Date: May 2005
Posts: 4,731
One of my traveling companions takes 34 pills per day (yes, all under a doctor's supervision). He can't fit a day's worth in most 7 day pill containers. The TSA tends to stress out when examining his bag, utterly convinced all those pills means he's a bad guy. 
JDiver - congratulations on the anniversary and successful cruise!
JDiver - congratulations on the anniversary and successful cruise!
Jun 13, 2017, 10:16 pm
#59
FlyerTalk Evangelist
Join Date: Jun 2005
Posts: 38,410
Yikes! He's in shape to travel with that messed up a medical situation?
Jun 15, 2017, 4:59 pm
#60
Original Member
Join Date: May 1998
Location: Palo Alto, CA, USA
Posts: 3,221
If travel includes foreign destinations the day/week containers are dicey because the pills are separated from their prescription labels on the original pill bottles. This can and has resulted in difficulty going through customs in some ports of entry. I don't chance it.
Last edited by KatW; Jun 15, 2017 at 5:09 pm