Travel as companion to person with Alzheimer's/ dementia
Jul 26, 2016, 9:47 pm
#31
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Location: NorCal - SMF area
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We're back from another cruise, and here are ideas that worked.
The lanyard, the bright pink folding tray (and now, thanks to CDTraveler, we can go wild with our own designs) and...
We have our predilect cruise line, Windstar Cruises, smaller ships (148-312 passengers), attentive service and people know who you are
: some of the dining crew will assist Lady JDiver in getting her buffet food organized and carry it back to the table at breakfast and lunch - of course if she loses track of where we're sitting, no problem.
We select a cabin with a layout similar to our bedroom at home. Lady JDiver sleeps on the left and when she gets up the head / bathroom is at her immediate left, closet next and third door exits the room. (In January they graciously upgraded us to a huge owners' suite - but I woke up, asked Lady JDiver where she was going as she had her hand on the door handle to the corridor and she replied "the bathroom, of course!" Uh, oh. Time to think ahead...)
The lanyard, the bright pink folding tray (and now, thanks to CDTraveler, we can go wild with our own designs) and...
We have our predilect cruise line, Windstar Cruises, smaller ships (148-312 passengers), attentive service and people know who you are
: some of the dining crew will assist Lady JDiver in getting her buffet food organized and carry it back to the table at breakfast and lunch - of course if she loses track of where we're sitting, no problem.We select a cabin with a layout similar to our bedroom at home. Lady JDiver sleeps on the left and when she gets up the head / bathroom is at her immediate left, closet next and third door exits the room. (In January they graciously upgraded us to a huge owners' suite - but I woke up, asked Lady JDiver where she was going as she had her hand on the door handle to the corridor and she replied "the bathroom, of course!" Uh, oh. Time to think ahead...)
Last edited by JDiver; Jul 26, 2016 at 9:58 pm
Aug 3, 2016, 9:21 am
#33
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
I posted this as part of a longer reply in another forum. My wife has Alzheimer's disease, and sometimes I must speak / advocate for her. I carry a card in my wallet, pocket or card holder that says "My companion has Alzheimer's - your understanding is appreciated" (see below); its small, portable, discrete and useful.
Hiding or pretending she has "nothing wrong" accomplishes nothing other than enabling stigma, communicating any of my own possible and improperly held shame about her condition and it facilitates misunderstanding. Her Alzheimer's disease is nothing to be ashamed at (any more than my recurring facial skin cancer is a source of shame) it is a naturally occurring condition and disability, and we've discussed previously our preference to be forthright when necessary and the possible unfairness but necessity of occasionally being educator-advocates. (Note: I'm speaking about myself, not criticizing anyone else for their decisions.)
I can't rely on what people's assumptions are - whether they think I'm a control freak or chauvinist speaking up for her, etc. so it's much easier to tell others what's going on, in my experience. E.g. my wife can't remember what she likes sometimes, and with this brain-based disease her senses change anyway; additionally, the executive functions are diminished - she could look at a wine list or menu for a very long time attempting to make a decision, and not be able to. When servers or Flight Attendants ask her questions, the spontaneity makes her "freeze up" as well.
IMO, those of us with people in our lives with special needs must take an active role in advocating and educating others - generally, at the opportune moment. That seems much more effective than asking for punishment or corrective action by complaint about another's actions (or inactions) after the fact.
I hope your travels are safe and happy.
Hiding or pretending she has "nothing wrong" accomplishes nothing other than enabling stigma, communicating any of my own possible and improperly held shame about her condition and it facilitates misunderstanding. Her Alzheimer's disease is nothing to be ashamed at (any more than my recurring facial skin cancer is a source of shame) it is a naturally occurring condition and disability, and we've discussed previously our preference to be forthright when necessary and the possible unfairness but necessity of occasionally being educator-advocates. (Note: I'm speaking about myself, not criticizing anyone else for their decisions.)
I can't rely on what people's assumptions are - whether they think I'm a control freak or chauvinist speaking up for her, etc. so it's much easier to tell others what's going on, in my experience. E.g. my wife can't remember what she likes sometimes, and with this brain-based disease her senses change anyway; additionally, the executive functions are diminished - she could look at a wine list or menu for a very long time attempting to make a decision, and not be able to. When servers or Flight Attendants ask her questions, the spontaneity makes her "freeze up" as well.
IMO, those of us with people in our lives with special needs must take an active role in advocating and educating others - generally, at the opportune moment. That seems much more effective than asking for punishment or corrective action by complaint about another's actions (or inactions) after the fact.
I hope your travels are safe and happy.
Aug 3, 2016, 2:03 pm
#34
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Join Date: Jun 2005
Posts: 38,410
I posted this as part of a longer reply in another forum. My wife has Alzheimer's disease, and sometimes I must speak / advocate for her. I carry a card in my wallet, pocket or card holder that says "My companion has Alzheimer's - your understanding is appreciated" (see below); its small, portable, discrete and useful.
Hiding or pretending she has "nothing wrong" accomplishes nothing other than enabling stigma, communicating any of my own possible and improperly held shame about her condition and it facilitates misunderstanding. Her Alzheimer's disease is nothing to be ashamed at (any more than my recurring facial skin cancer is a source of shame) it is a naturally occurring condition and disability, and we've discussed previously our preference to be forthright when necessary and the possible unfairness but necessity of occasionally being educator-advocates. (Note: I'm speaking about myself, not criticizing anyone else for their decisions.)
I can't rely on what people's assumptions are - whether they think I'm a control freak or chauvinist speaking up for her, etc. so it's much easier to tell others what's going on, in my experience. E.g. my wife can't remember what she likes sometimes, and with this brain-based disease her senses change anyway; additionally, the executive functions are diminished - she could look at a wine list or menu for a very long time attempting to make a decision, and not be able to. When servers or Flight Attendants ask her questions, the spontaneity makes her "freeze up" as well.
IMO, those of us with people in our lives with special needs must take an active role in advocating and educating others - generally, at the opportune moment. That seems much more effective than asking for punishment or corrective action by complaint about another's actions (or inactions) after the fact.
I hope your travels are safe and happy.
Hiding or pretending she has "nothing wrong" accomplishes nothing other than enabling stigma, communicating any of my own possible and improperly held shame about her condition and it facilitates misunderstanding. Her Alzheimer's disease is nothing to be ashamed at (any more than my recurring facial skin cancer is a source of shame) it is a naturally occurring condition and disability, and we've discussed previously our preference to be forthright when necessary and the possible unfairness but necessity of occasionally being educator-advocates. (Note: I'm speaking about myself, not criticizing anyone else for their decisions.)
I can't rely on what people's assumptions are - whether they think I'm a control freak or chauvinist speaking up for her, etc. so it's much easier to tell others what's going on, in my experience. E.g. my wife can't remember what she likes sometimes, and with this brain-based disease her senses change anyway; additionally, the executive functions are diminished - she could look at a wine list or menu for a very long time attempting to make a decision, and not be able to. When servers or Flight Attendants ask her questions, the spontaneity makes her "freeze up" as well.
IMO, those of us with people in our lives with special needs must take an active role in advocating and educating others - generally, at the opportune moment. That seems much more effective than asking for punishment or corrective action by complaint about another's actions (or inactions) after the fact.
I hope your travels are safe and happy.
Aug 3, 2016, 4:00 pm
#35
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JDiver, this is such a wonderful, wonderful thread. It is incredibly useful. It is also incredibly moving. Letting people know what is going on and what your companion's needs are is so often the key.
If I may, I know my own husband does this for me. As you know, I travel with my own wheelchair, as I have limited mobility. When we are traveling TATL, before he goes to sleep, my husband will quietly advise the FA that, if I am going to the lav, just wake him up, and he will get up to walk me there (we usually sit one in front of the other). As soon as the FAs are aware that all I need is assistance walking to and from the lav (not inside the lav), no one wakes up my husband; the FAs walk me to and from the lav themselves. Point is, the more information the cabin crew have, the easier it is for them to provide me with assistance, kindly and unobtrusively.
If I may, I know my own husband does this for me. As you know, I travel with my own wheelchair, as I have limited mobility. When we are traveling TATL, before he goes to sleep, my husband will quietly advise the FA that, if I am going to the lav, just wake him up, and he will get up to walk me there (we usually sit one in front of the other). As soon as the FAs are aware that all I need is assistance walking to and from the lav (not inside the lav), no one wakes up my husband; the FAs walk me to and from the lav themselves. Point is, the more information the cabin crew have, the easier it is for them to provide me with assistance, kindly and unobtrusively.
Aug 4, 2016, 12:39 pm
#36
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
For some others (Japan much of Europe, etc.) that would probably be useful (though attitudes expressed by some Japanese to people who are "different" are less than salutary and welcoming).
For yet others, probably a waste of time. I can think of a number of countries where the information would be less than useful (particularly with petty officials and bureaucrats) due to ignorance and negative attitudes toward people with a disability (such as in my natal country, Mexico).
JDiver, this is such a wonderful, wonderful thread. It is incredibly useful. It is also incredibly moving. Letting people know what is going on and what your companion's needs are is so often the key.
If I may, I know my own husband does this for me. As you know, I travel with my own wheelchair, as I have limited mobility. When we are traveling TATL, before he goes to sleep, my husband will quietly advise the FA that, if I am going to the lav, just wake him up, and he will get up to walk me there (we usually sit one in front of the other). As soon as the FAs are aware that all I need is assistance walking to and from the lav (not inside the lav), no one wakes up my husband; the FAs walk me to and from the lav themselves. Point is, the more information the cabin crew have, the easier it is for them to provide me with assistance, kindly and unobtrusively.
If I may, I know my own husband does this for me. As you know, I travel with my own wheelchair, as I have limited mobility. When we are traveling TATL, before he goes to sleep, my husband will quietly advise the FA that, if I am going to the lav, just wake him up, and he will get up to walk me there (we usually sit one in front of the other). As soon as the FAs are aware that all I need is assistance walking to and from the lav (not inside the lav), no one wakes up my husband; the FAs walk me to and from the lav themselves. Point is, the more information the cabin crew have, the easier it is for them to provide me with assistance, kindly and unobtrusively.
Thank you for sharing a very positive effect of educating and building personal bridges.
Aug 4, 2016, 3:59 pm
#37
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Join Date: Jun 2005
Posts: 38,410
Yes, and it is possible with a little effort. At this point much of our travel is on English-speaking airlines, cruise lines and within countries shete English is at least spoken commonly (e.g. our recent trip to Iceland).
For some others (Japan much of Europe, etc.) that would probably be useful (though attitudes expressed by some Japanese to people who are "different" are less than salutary and welcoming).
For some others (Japan much of Europe, etc.) that would probably be useful (though attitudes expressed by some Japanese to people who are "different" are less than salutary and welcoming).
Aug 4, 2016, 11:37 pm
#38
Moderator: American AAdvantage
Original Poster
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I do try to learn a few words wherever I go, but we've narrowed down. Africa, India, parts of Asia, Antarctica - we probably won't visit again. And some places, I can speak enough of the language to get the information across.
Nov 19, 2016, 12:36 pm
#39
Join Date: May 2009
Posts: 509
My 91 yr old mother and I were on a short plane ride home after a Las Vegas trip. She normally is fairly independent and able to manage walking down the aisle to the toilet. On this trip she was wobbly and I went to assist her. DUMMY ME! I had let my guard down and left my purse under my seat in the rush to assist. My seat mate had helped themselves to cash from my wallet. -- just a cautionary note about traveling when having to manage everything on your own.
Nov 19, 2016, 12:37 pm
#40
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I am irate on your behalf. That's terrible. I assume you discovered it after the flight, thus no opportunity to take action?
Nov 26, 2016, 9:13 pm
#42
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
My 91 yr old mother and I were on a short plane ride home after a Las Vegas trip. She normally is fairly independent and able to manage walking down the aisle to the toilet. On this trip she was wobbly and I went to assist her. DUMMY ME! I had let my guard down and left my purse under my seat in the rush to assist. My seat mate had helped themselves to cash from my wallet. -- just a cautionary note about traveling when having to manage everything on your own.
Dec 4, 2016, 4:20 pm
#43
Moderator: American AAdvantage
Original Poster
Join Date: May 2000
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Programs: AA LT Plat; HH LT Diamond, Maître-plongeur des Muccis
Posts: 62,948
We had a brilliant transatlantic crossing from Lisbon to Bridgetown.
We again selected a suite (these three ships are all suites, so the cheapest cabin is no smaller than the most expensive one, unless you go for one of six specialty suites) laid out like our home master bedroom (only we don't have the suite part, lol!)
See here for a photo of a Suite on Star Pride, Legend and Breeze
When Barbara sleeps it's on the left side of the bed. Immediately adjacent to her left are, in order, the bathroom, closet and exit, just as at home. This minimizes the possibility of disorientation, which we had once when we were kindly upgraded to a non-conforming, if very expansive, suite.
We knew the ship's Master, Captain Alan MacAry, from previous trips, so we asked the staff if it would be possible to arrange a wedding vows renewal service to further celebrate our fifty years of marriage. Our celebration was catered with Champagne, hors d'ouvres and a cake. Captain MacAry officiated, and arrendung were various ship's officers, a friend from a previous crossing and six new friends we made this trip. (In part, I think it was very reinforcing to my spouse given the Alzheimer's disease; this was another way of letting her know I'm not going anywhere.)
A lot of noise and activity can be difficult to handle with Alzheimer's disease, and we notice that, as friends and groups form and the voyage approaches it's end, the noise level increases considerably in public spaces such as the main AmphorA dining room. As Windstar has Candles, an alternative evening dining venue in the smaller Veranda restaurant that serves ~30-35, we found that speaking to the Dining Manager was able to get us into Candles a bit more often than would be normal. The greater intimacy made a difference in comfort, and as a further option one can dine in one's suite - there's a cabin dining menu, and one can order anything from the evening menu as well.
-more coming-
We again selected a suite (these three ships are all suites, so the cheapest cabin is no smaller than the most expensive one, unless you go for one of six specialty suites) laid out like our home master bedroom (only we don't have the suite part, lol!)
See here for a photo of a Suite on Star Pride, Legend and Breeze
When Barbara sleeps it's on the left side of the bed. Immediately adjacent to her left are, in order, the bathroom, closet and exit, just as at home. This minimizes the possibility of disorientation, which we had once when we were kindly upgraded to a non-conforming, if very expansive, suite.
We knew the ship's Master, Captain Alan MacAry, from previous trips, so we asked the staff if it would be possible to arrange a wedding vows renewal service to further celebrate our fifty years of marriage. Our celebration was catered with Champagne, hors d'ouvres and a cake. Captain MacAry officiated, and arrendung were various ship's officers, a friend from a previous crossing and six new friends we made this trip. (In part, I think it was very reinforcing to my spouse given the Alzheimer's disease; this was another way of letting her know I'm not going anywhere.)
A lot of noise and activity can be difficult to handle with Alzheimer's disease, and we notice that, as friends and groups form and the voyage approaches it's end, the noise level increases considerably in public spaces such as the main AmphorA dining room. As Windstar has Candles, an alternative evening dining venue in the smaller Veranda restaurant that serves ~30-35, we found that speaking to the Dining Manager was able to get us into Candles a bit more often than would be normal. The greater intimacy made a difference in comfort, and as a further option one can dine in one's suite - there's a cabin dining menu, and one can order anything from the evening menu as well.
-more coming-