Mild Alzheimer's Mom traveling with us

[2Oregonians]

Mom (78) has taken over 20 cruises when Dad was alive. It has been about 8 years since their last cruise. She didn't think she'd go on another one, but my husband and I decided recently that we'd go on "one more" and take Mom.

 

She now has mild Alzheimer's, however. At this stage, it's all about the short-term memory. New information just does NOT stay with her. She gets along fine as far as safety issues. She lives in an apartment by herself and doesn't do anything unsafe as far as leaving the stove on and things like that. She's still pretty "with it" as far as those things go. However, she'll definitely forget our cabin number. I can guarantee that! And if we go our separate ways at any time (on the ship), there's no way she'll remember to meet at X place at X time. Most likely I'll have to stay with her the majority of the time just for that reason.

 

However, I'm sure there will be times where she wants to stay in the room and rest while my husband and I are roaming about the ship. If she decides to leave the room, she won't remember the room number, and maybe not even the floor we're on.

 

My question for you all is, do you have any suggestions of things I could do? She'll be wearing the key card around her neck on a lanyard. I cannot write the room number on the key card (or whatever ncl calls it) because if she leaves it somewhere, then people can get in our room. I thought about maybe bringing a sharpie and writing the room number on her arm or something. Is that cruel? lol. It'll look like concentration camp numbers tattoed on her!! (I say arm, because it would get washed off her hand most likely.)

 

Obviously she can just go to the purser's desk and tell them her name and they will tell her what room she's in. But my mother is the type that doesn't want to be a bother to anyone, so I picture her trying for an hour to find her way back. That would be too upsetting. For her AND for me!!

 

I was just reading something about decorating doors. I could do something like that. Put something on the door that she would easily recognize. However, that assumes that she will remember the FLOOR we're on, and even the general area. I don't know..... I'm really starting to worry about this trip as far as she's concerned. At ports she will be with me ALL the time, but on the ship, there are bound to be times when we're not together. I just thought I'd throw it out there and see if you guys have any ideas or suggestions. Thanks!!

[Whippets]

Instead of writing on her arm with a permanent sharpie......how about a wrist band, one of the colored ones, like pink for breast cancer and write the room number on it? If you took several along, in case she misplaces one it might work.

[2Oregonians]

Instead of writing on her arm with a permanent sharpie......how about a wrist band, one of the colored ones, like pink for breast cancer and write the room number on it? If you took several along, in case she misplaces one it might work.

Ooohhh!! Love that idea!! Or even one of those taped on ones that you get at an amusement park or concert or something like that. Wonder if I can buy one of those somewhere? Or the ones they use in hospitals even. Just thinking of something that wouldn't come off very easily. Thanks for the idea!!

[Mysticks1]

We use these things to carry our keycards with us. Would it work to keep her key in this along with a note with the cabin number and the deck name/number to help her remember or allow someone else to help her? They just hang around your neck and I love it to keep my card with me when out and about around the ship or to keep credit cards or money with your card on you when off the ship. Sometimes you don't have pockets.

 

http://www.witzsportcases.com/see-it-safe.html

[lambchoplady]

If you use permanent ink, it will last through several washings. When my DH was having wrist surgery, I wrote "Yes" on the correct wrist and "NO" on the wrong one. The nurses got a chuckle but agreed that it was a good idea!

[DMLyons]

Can you put a walkie-talkie in her pocket or on a lanyard, so she can reach you if she finds herself lost? They make some pretty small ones. It would also allow you to reach her, if she doesn't meet up with you as agreed.

 

 

DML

[2Oregonians]

If you use permanent ink, it will last through several washings. When my DH was having wrist surgery, I wrote "Yes" on the correct wrist and "NO" on the wrong one. The nurses got a chuckle but agreed that it was a good idea!

 

I agree with you there. I just keep going back to it looking like concentration camp numbers. They used to tattoo those on people's forearm/wrist area. And with ncl cabin numbers being 5 digits, it could look like that! Probably a silly reason not to do it, but I just worry it's a tiny bit un-nice.

 

Can you put a walkie-talkie in her pocket or on a lanyard, so she can reach you if she finds herself lost? They make some pretty small ones. It would also allow you to reach her, if she doesn't meet up with you as agreed.

 

 

Could.... but I don't think the range on those is far enough. If she's in a hallway with no windows (all rooms), and we're 5 decks up at the other end of the ship, I don't think she'd reach us.

[2Oregonians]

We use these things to carry our keycards with us. Would it work to keep her key in this along with a note with the cabin number and the deck name/number to help her remember or allow someone else to help her? They just hang around your neck and I love it to keep my card with me when out and about around the ship or to keep credit cards or money with your card on you when off the ship. Sometimes you don't have pockets.

 

http://www.witzsportcases.com/see-it-safe.html

I do like this idea. My only concern is that if she left the whole thing somewhere, it would have the key card AND the room number with it. I'm not too terribly concerned with her losing JUST her keycard, as we can always replace that. But I don't want the thought of someone finding the card as well as the room number it belongs to.

[sara_m]

I agree with you there. I just keep going back to it looking like concentration camp numbers. They used to tattoo those on people's forearm/wrist area. And with ncl cabin numbers being 5 digits, it could look like that! Probably a silly reason not to do it, but I just worry it's a tiny bit un-nice.

 

 

 

Could.... but I don't think the range on those is far enough. If she's in a hallway with no windows (all rooms), and we're 5 decks up at the other end of the ship, I don't think she'd reach us.

 

Not sure if this helps at all - but the walkie talkies will reach :) i took a set on the spirit with me a few years back. My sis and her DH had one while me and DH had the other. We were in pretty much constant contact. They were like $60 or something - had 2kms of "coverage"

[2Oregonians]

Not sure if this helps at all - but the walkie talkies will reach :) i took a set on the spirit with me a few years back. My sis and her DH had one while me and DH had the other. We were in pretty much constant contact. They were like $60 or something - had 2kms of "coverage"

Wow, that's good to hear. Other threads I've read have indicated they weren't always reliable. Maybe I'll check into that! Also, for us "dumb" Americans, how far is 2kms? :p

 

Edited to add: I looked it up. It's about 1 1/4 mi.

[kjquilts]

Short term memory loss is such a heartbreaker. I know because my mom has severe short term memory loss problems. My mom also still lives in her own home and for now it works ok because we're only a mile apart and spend a lot of time together.

Mom cruised with my dh and I before her last marriage. She loved everything about cruising. When she remarried she and Don cruised with us three times. Twice we shared staterooms and once they had their own. These were very happy times and are wonderful memories now.

 

After Don passed away Mom and I cruised one more time. That year mom's memory problems had started getting worse and the cruise was just not the same. She hated the "noise" - shows were too loud, restaurants were too loud, there was just too much confusion. Added to this was the fact that our stern stateroom was unusable at night due to being above the lounge and we ended up having a "sleeping stateroom" as well as our assigned cabin.

 

She did enjoy the port days (low key western caribbean) so that was our salvation. The ship (same one she'd been on twice before) was another story. Mom wouldn't use ear plugs so she sat in the shows with her fingers in her ears. Mom didn't like the casino - again too loud and also too smokey so we only went once. One night and only one night I needed a break - got her situated in the stateroom ready for bed and reading a cat mystery. Told her not to wait up for me and went to the casino. When I came back she was sitting up waiting for me like I was 12.

I miss having mom cruise with us and feel guilty planning cruises without her. I also know that both my dh and I need a break because living in this situation is not easy and I also know that mom doesn't remember that we've been gone without her. With mom we've learned that frequent day trips or two or three day trips work much better. She gets out of the house and has some relaxation and then is happy to be home where she feels comfortable.

If your mom is like mine, in honesty I would either plan on having your mom with you at all times or not taking her on the cruise. Another option could be having your mom and another family member or friend share a stateroom so they could be with your mom when you are not.

 

[nikex]

Can you put a walkie-talkie in her pocket or on a lanyard, so she can reach you if she finds herself lost? They make some pretty small ones. It would also allow you to reach her, if she doesn't meet up with you as agreed.

 

 

DML

 

This plus a wristband may be the best idea! This way if she's lost she can just radio her daughter and ask for some help.

[2Oregonians]

Short term memory loss is such a heartbreaker. I know because my mom has severe short term memory loss problems. My mom also still lives in her own home and for now it works ok because we're only a mile apart and spend a lot of time together.

Mom cruised with my dh and I before her last marriage. She loved everything about cruising. When she remarried she and Don cruised with us three times. Twice we shared staterooms and once they had their own. These were very happy times and are wonderful memories now.

 

After Don passed away Mom and I cruised one more time. That year mom's memory problems had started getting worse and the cruise was just not the same. She hated the "noise" - shows were too loud, restaurants were too loud, there was just too much confusion. Added to this was the fact that our stern stateroom was unusable at night due to being above the lounge and we ended up having a "sleeping stateroom" as well as our assigned cabin.

 

She did enjoy the port days (low key western caribbean) so that was our salvation. The ship (same one she'd been on twice before) was another story. Mom wouldn't use ear plugs so she sat in the shows with her fingers in her ears. Mom didn't like the casino - again too loud and also too smokey so we only went once. One night and only one night I needed a break - got her situated in the stateroom ready for bed and reading a cat mystery. Told her not to wait up for me and went to the casino. When I came back she was sitting up waiting for me like I was 12.

I miss having mom cruise with us and feel guilty planning cruises without her. I also know that both my dh and I need a break because living in this situation is not easy and I also know that mom doesn't remember that we've been gone without her. With mom we've learned that frequent day trips or two or three day trips work much better. She gets out of the house and has some relaxation and then is happy to be home where she feels comfortable.

If your mom is like mine, in honesty I would either plan on having your mom with you at all times or not taking her on the cruise. Another option could be having your mom and another family member or friend share a stateroom so they could be with your mom when you are not.

 

Out situations sound similar. My mom lives 1.8 miles away from us, and I'm over there quite often. She doesn't drive, so I take her grocery shopping and to all her appointments. I do Daycare at home, so sometimes I will bring the younger children to her apt. to visit while the older ones are in school. We'll take her with us if we go somewhere nearby for dinner, or if we go to the movies or something. We have taken her on a few out-of-towners with us, but as you said, it's just easier and more relaxing to let her stay home. And I agree that she won't even remember that we were gone! I leave a note on the fridge with emergency numbers and it states where we are, when we're leaving, and when we'll be back.

 

I think your mom is a little further on in her journey than my mom is, though. From what I've read, they get to the point where they are finicky (sp?) about little things, and crabby about things that didn't used to make them crabby. My mom isn't like that. Yet. She's pretty tolerant of almost anything. She always just goes with the flow, as she did before she got Alzheimer's. She's always been very easy-going, and is still that way.

 

I totally agree with you on needing breaks. I probably WILL keep her with me 99% of the time, but I know I'll need to be out on my own at some point, or that we'll want to do something and she'll be tired and want to stay in the room. It's bound to happen.

 

We are gong with other people. They are my husband's family. I really do wish I could have had her stay in a cabin with a single woman that is going, but that's really asking a lot of someone else to be my mom's "sitter". She can be a bit frustrating if you're not used to being around someone who cannot remember recent information. Even just conversationally. You end up re-telling answers to things a dozen times. They ended up putting the single gal in with my husband's parents.

 

We'll survive! :D

[oceanlessinNM]

I have been working with Alzheimer's-Memory care patients for 10 years. Now my Mom is in end stage and is in a group home 5 miles from me. You may want to call the local Alzheimer's Assoc. and chat with them and maybe they could give you some ideas. While she may be great at home you may get on the ship and she will be confused( and then panic). I always feel bad when they do that because imagine how you would feel to look around a room and not know where you are, how you got there or nobody that you recognize is anywhere in sight. When my Mom 1st moved here and was in her own apt. we got her a cell phone and she never could figure out how to use it. I would certainly practice with a walkie talkie before you go.

 

Have you taken her somewhere (grocery store, church etc) and left her alone for an hour and observed how she gets along and handles things? I know that you want to take her on a cruise to provide a pleasant experience for her one last time but it may not turn out that way. Hope everything turns out ok-let us know- and remember if she can't go you don't need to feel guilty. It is an awful disease !!

[oLEEander]

You might want to check out something like this.

 

http://www.amazon.com/Travel-Wristband-Disposable-Bracelets-Precious/dp/B000V6H100

 

If the ship has Iconcierge active and you sign up, the service desk may be able to have that noted on your room file and be able to contact you if mom ends up confused and separated from you.

 

If you join your roll call and and mom attends the meet and greet, I' m sure you'd gain a number of extra eyes who'd notice if she was wandering by herself. No matter how big the ship you seem to run into the same people time after time

[sdmike]

Would she remember to look at the wrist band?

 

If I were you I would contact NCL's special services desk so 1) they're aware of you mom's issues, and 2) see if they have suggestions.

[Lizcourt]

I wonder if the cruise ship would have the facilities to provide you with a wristband. I know that when we travel with my underage nieces, they are always issued a wristband with their name and cabin number (and muster station). I wonder if you call the line in advance they would be able to issue a similar wristband for your mom. The advantage is that these are definitely designed to be worn 24 hours a day and during all kinds of activities, including water activities, so it couldn't be removed, lost or become unreadable during the cruise.

[WaldosPepper]

Would she remember to look at the wrist band?

 

If I were you I would contact NCL's special services desk so 1) they're aware of you mom's issues, and 2) see if they have suggestions.

 

I was just about to make a similar comment. My MIL is 94 and lives with us due to her blindness and dementia. I've watched her go through the journey, and can relate completely to the OP's situation.

 

I would be fearful that she would not remember to look at the wristband, nor would she remember that she has a walkie talkie. Worse yet, she could perhaps set the walkie talkie down and forget to bring it with her. Both of these seem like fantastic ideas on the surface, but having lived with this for six years I would predict that neither one would be effective, because they are "new knowledge" and just won't be retained.

 

I would wholeheartedly suggest contacting the NCL Desk and chatting with them about the situation. I am 100% sure you are not the first person who has found themselves in this situation, and I'm thinking NCL has ways to help.

 

I would also second the idea of contacting the Alzheimer's Association. They have help available for free, and they're just remarkably sweet, kind and helpful. They've been a huge help when I've been at my wit's end. ;)

 

OP, you deserve to be able to relax once you board that ship. You've spent a long time putting this trip together and researching all the details for your family members. The last thing you need is to have to stress unnecessarily. I will be keeping my fingers crossed that you are able to get the info and help that you need, and that you are able to completely unwind and enjoy every moment of your cruise. :)

[che5904]

Ooohhh!! Love that idea!! Or even one of those taped on ones that you get at an amusement park or concert or something like that. Wonder if I can buy one of those somewhere? Or the ones they use in hospitals even. Just thinking of something that wouldn't come off very easily. Thanks for the idea!!

 

You can buy plain ones like this at the $ stores. They are in the art section for children to decorate with gems. They have a snap to snap them on and off

 

[lambchoplady]

I am heartbroken reading this with tears in my eyes as I type. I just promised to donate some money for an Alzheimers fundraiser. I think I will double the amount!

[Moondawgie]

2Oregonians, I just want to lend my support as well. I work with seniors (many with dementia or early alz) and I know what families go through. It is indeed hearbreaking.

 

What some families do is hire a caregiver (companion). It would be ideal if you knew someone in this field who is willing to take a cruise with you (paid). May be something to think about.

 

Good luck with whatever you decide.

[cheshyrkat]

I think it is awesome that you are including your mother in your cruise! I have had the privilege of working with people who have dementia and I just wanted to add to this by sharing my experiences with you with the hope that it will help you have a good, safe trip.

 

I know that as the memory fails, if a person remains in the environment they are familiar with, they develop coping mechanisms to compensate for their short term memory loss. Sometimes these coping mechanisms can even disguise the person's true level of function within the familiar environment.

 

When they are taken out of the familiar areas, whether it be in their home or in their community, their families are often quite shocked to see how quickly their loved one seems to demonstrate a rapid decline in function. They simply do not have the usual environmental cues that they have come to rely on to preserve their ability to manage their day to day function.

 

For example, I don't know if your cabin will have a window or a balcony, but without the ability to see if it is day or night, you may find your mother getting disoriented about what time of day it is. The Alzheimer's Association may be able to give you tips on how to provide your mother with some environmental cues that may help her adjust to the strange environment. It would be great if the person who you speak with has been on a cruise before.

 

You might also want to see if there are any online forums for caregivers of people with dementia to see if they have any suggestions, too. I would definitely put signs on the doors to discourage wandering. If she were my mother, I would also look into getting some kind of bracelet that she can't, or won't remove, that would be like a medical alert bracelet. Check out these links for some ideas:

 

For info about safety in general with people who have dementia-

http://www.alz.org/national/documents/brochure_stayingsafe.pdf

 

For tips about traveling with someone who has dementia-

http://www.alz.org/care/alzheimers-dementia-and-traveling.asp

 

About wandering in general-

http://www.alz.org/care/alzheimers-dementia-wandering.asp

 

The Safe Return program and ID Jewelry-

http://www.alz.org/care/dementia-medic-alert-safe-return.asp#cost

 

Of course you know your mother better than I do and I know you will do whatever is best for her. Obviously you care about her quality of life and want to give her happy experiences, otherwise you wouldn't be here asking about this kind of thing. I hope any of this is helpful to you, and that you both have a safe and enjoyable cruise!

[Mom2B&Z]

I think it is awesome that you are including your mother in your cruise! I have had the privilege of working with people who have dementia and I just wanted to add to this by sharing my experiences with you with the hope that it will help you have a good, safe trip.

 

I know that as the memory fails, if a person remains in the environment they are familiar with, they develop coping mechanisms to compensate for their short term memory loss. Sometimes these coping mechanisms can even disguise the person's true level of function within the familiar environment.

 

When they are taken out of the familiar areas, whether it be in their home or in their community, their families are often quite shocked to see how quickly their loved one seems to demonstrate a rapid decline in function. They simply do not have the usual environmental cues that they have come to rely on to preserve their ability to manage their day to day function.

 

For example, I don't know if your cabin will have a window or a balcony, but without the ability to see if it is day or night, you may find your mother getting disoriented about what time of day it is. The Alzheimer's Association may be able to give you tips on how to provide your mother with some environmental cues that may help her adjust to the strange environment. It would be great if the person who you speak with has been on a cruise before.

 

You might also want to see if there are any online forums for caregivers of people with dementia to see if they have any suggestions, too. I would definitely put signs on the doors to discourage wandering. If she were my mother, I would also look into getting some kind of bracelet that she can't, or won't remove, that would be like a medical alert bracelet. Check out these links for some ideas:

 

For info about safety in general with people who have dementia-

http://www.alz.org/national/documents/brochure_stayingsafe.pdf

 

For tips about traveling with someone who has dementia-

http://www.alz.org/care/alzheimers-dementia-and-traveling.asp

 

About wandering in general-

http://www.alz.org/care/alzheimers-dementia-wandering.asp

 

The Safe Return program and ID Jewelry-

http://www.alz.org/care/dementia-medic-alert-safe-return.asp#cost

 

Of course you know your mother better than I do and I know you will do whatever is best for her. Obviously you care about her quality of life and want to give her happy experiences, otherwise you wouldn't be here asking about this kind of thing. I hope any of this is helpful to you, and that you both have a safe and enjoyable cruise!

 

+1

I too work with people with Dementia, my specialty involves assessing their ability to function in a variety of different environments.

People with Alzheimer's type dementia frequently have a deterioration in function in new environments. You definitely need to approach the trip with your eyes wide open. The Alzheimer's Society is a great source of information, but you can also ask her health care team for suggestions. I'm often asked if people should travel and what specific suggestions I have for ways of mitigating situations that may arise. This isn't something that should be done over the Internet :)

I definitely agree with suggestions of avoiding new technology (like Walkie Talkies) or anything new into her routine while on the trip. NCL should definitely make note in her fine that she has memory loss and who to contact in the event she becomes disoriented. Sometimes people can learn to rely on a small notebook or other memory aid, if this is the case then you could bring it with you on the trip and record the cabin number, a simple schedule etc...but you likely need help setting this up as it can be tricky.

Things to think about: Do you need to fly? Can she handle security on her own, either at the airport or terminal? Can she answer check-in questions independently? Can she find the toilet without the bathroom door being open? Does she need night lights for at night? Is her sleep/wake cycle regular and is it going to be disturbed when travelling? Does she have sensory sensitivities? (Two of the big ones are noise and visual overstimulation, which can easily happen on a ship.). Will she recognize what the objects in her cabin are and what they are for? (Eg the sink and toilet look different, so will she know they are for voiding and washing hands?). The soap dispensers on NCL have very poor visual contrast, one of the first signs of Alzheimer's disese is visual perceptual impairments so she may have truble distinguising the soap dispenser from the wall. Some people don't recognize the sink and toilet as what to use to wash their hands, so you may want to bring a bar of soap and bottle of shampoo that is familiar to her.

This got a lot longer than I intended (!), but I'm pretty passionate about my work :). Definitely ask lots of questions and consider many possibilities before you go. I've worked with many families who had wonderful trips together post-diagnosis and were glad they went. Others weren't as lucky and for the most part it was predictable by those of us working with them. A few people did a "trial run" at a hotel outside their town to see how things would go, which was not always a perfect solution but does often give insight into what it might be like on the ship.

Good luck!

[kcdancerkc]

I'm a social worker, worked in hospice and have an aging parent who is on meds that make him forget. Nobody here is being realistic in my opinion.

 

There is no way that you could decorate 1 door out of hundreds and hundreds for her to find

 

A bracelet of any kind unless it has GPS is not going to guarantee anything

 

I could only hope as only ONE person so far has suggested --- please hire somebody to watch her 24/7.

 

I think it's like taking a preschooler on a cruise -- you will not be able to relax--there are drunk people all over the ship - hellllo

 

I feel very badly for you and hope you can find an answer. Ship personnel cannot be responsible for her - sometimes their English is very broken and they are already understaffed.

 

If I could not hire somebody, I would not take her. Unless there is a tiny chance that the kids club will take her on. That is secure.

 

good luck and I really hope something works out for you

[2Oregonians]

I'm a social worker, worked in hospice and have an aging parent who is on meds that make him forget. Nobody here is being realistic in my opinion.

 

There is no way that you could decorate 1 door out of hundreds and hundreds for her to find

 

A bracelet of any kind unless it has GPS is not going to guarantee anything

 

I could only hope as only ONE person so far has suggested --- please hire somebody to watch her 24/7.

 

I think it's like taking a preschooler on a cruise -- you will not be able to relax--there are drunk people all over the ship - hellllo

 

I feel very badly for you and hope you can find an answer. Ship personnel cannot be responsible for her - sometimes their English is very broken and they are already understaffed.

 

If I could not hire somebody, I would not take her. Unless there is a tiny chance that the kids club will take her on. That is secure.

 

good luck and I really hope something works out for you

 

Holy cow.... you make her sound like some sort of drooling imbecile. Put her in the kids club? Really??? My mother is in the earliest stage of her dementia. As I explained in my original post, she is fine in every way, it's just that she forgets things she was recently told. Such as a room number. She has been on about 24 cruises and remembers them. She CAN function. She knows the difference between a toilet and a sink. She can figure out how to look at a bracelet. And I don't need to hire anyone. I've been taking care of her and know her better than literally ANYONE, including my husband and brothers.

 

Thanks to everyone who had helpful advice. I will definitely talk to the cruiseline and have them note our situation. I'll read some of the articles that someone linked. And I'll use some sort of a wrist band situation to write down our room number. Those were great suggestions! :)

 

Thanks to the people who talked about not feeling comfortable in a new environment. When we moved her to her apartment after Dad died, it did take some getting used to. She is now very comfortable and in a routine. I think the regular routine probably helps a lot. I hadn't thought about that. However, I think this cruise will be ok because she's done so many of them before and remembers them well. We recently looked at pictures from past cruises and she reminisced about tablemates and where they were from, and some of the ports and which excursions they took. She's fine with past memories, and that's where the cruise will fit in. She's also done this itinerary (Alaska) about 5 times. We're in a mini-suite, since someone asked.

 

Thanks also to "lampchoplady". That was very sweet of you to say!

 

Thanks, folks! ;)