Dementia

[tnaegele]

Hey All,

I'm taking my mom on a short 3 day cruise next week...and she has advanced Dementia.  Any tips?  We cruised last year when her condition was pretty bad and many many times in previous years while her condition was less advanced...but this time I'm looking for any tips anyone else who has traveled with someone who lives with Dementia may have.  She's in a wheelchair and incontinent.

[kokopelli-az]

Here's a link to someone who reported on this subject.  https://boards.cruisecritic.com/topic/2946372-thoughts-on-cruising-with-a-partner-with-dementia-and-a-cane/#comment-65611355

 

And also regarding incontinence.  https://boards.cruisecritic.com/topic/2849349-incontinence/#comment-63130648

 

You didn't say which cruise line you will be on, but you will need to advise your cruise line's Access Dept that you are bringing a wheelchair.   Some cruise lines give special needs passengers a wrist band so the crew knows that person may need extra assistance. 

Take double the supplies you think you will need; you probably cannot purchase incontinence supplies on the ship.  Let your room steward know you will be disposing of incontinence supplies (they typically are put with special items for disposal).   Bring plenty of plastic bags for disposal of your supplies; your room steward can probably provide you with plastic bags, too. 

 

[frteach]

Thanks for these links. I am cruising with my husband for the first time since he was diagnosed with dementia. His mobility issues are not as advanced as needing a walker, but he does move slowly and stiffly with considerable tremors. We are cruising with Celebrity on the Apex, and I would be interested in hearing from anyone who knows what help is available, if any. He doesn't wander, but we may still get separated on the ship. I hope not. I did get an accessible cabin, so I would like to hear what I can expect there too. 

[Essiesmom]

What kind of help are you thinking of?  The terms and conditions are pretty clear on the fitness to travel…any physical assistance has to be provided by the family.  EM

[libtrek]

4 hours ago, frteach said:

Thanks for these links. I am cruising with my husband for the first time since he was diagnosed with dementia. His mobility issues are not as advanced as needing a walker, but he does move slowly and stiffly with considerable tremors. We are cruising with Celebrity on the Apex, and I would be interested in hearing from anyone who knows what help is available, if any. He doesn't wander, but we may still get separated on the ship. I hope not. I did get an accessible cabin, so I would like to hear what I can expect there too. 

I would say with him walking slowly and stiff, you might want to consider wheelchair assistance at the ship and airport. Also, I would bring a cane for him. Have you considered some sort of tracking device, just in case. I’ve settled on an Apple Watch. He might find the ship disorienting so be prepared.

[frteach]

Thanks, I have wheelchair assistance at the airport. The tracking device is a great idea. I also have door alarms, but I don't know if they would work on the cabin doors. He is familiar with Celebrity ships, but he can't remember numbers at all. We are travelling with family, so someone will always be with him. If they can give him a wrist bracelet, I will try to get him to wear it. I am painfully aware that these trips will not be possible soon, and am in a kind of "seize the day" attitude.

[libtrek]

16 hours ago, frteach said:

Thanks, I have wheelchair assistance at the airport. The tracking device is a great idea. I also have door alarms, but I don't know if they would work on the cabin doors. He is familiar with Celebrity ships, but he can't remember numbers at all. We are travelling with family, so someone will always be with him. If they can give him a wrist bracelet, I will try to get him to wear it. I am painfully aware that these trips will not be possible soon, and am in a kind of "seize the day" attitude.

Yes, seize the day, I couldn’t agree more. As for the door, I’m not sure about the alarm fitting but I have a simple solution. I have a ring shape with dangling bells that I put over the door handle. Pretty sure it would wake me up if he tried to leave the room. Left over reflex from mom days. I am loving my tracking device, on my phone it shows where it is. So far he is intrigued by it so leaves it on. A lanyard with room card is good. If he wanders on ship, any crew member could find his room with the card.

[CruisingAlong4Now]

Make sure his mobility and mental state are noted for the muster drill.  

 

Some cruise lines prefer that all passengers that need assistance be assigned to a specific muster station so that the crew member responsible for that station ensures the passengers in need are attended.

[frteach]

I will definitely get a bell and tie it to the door, thanks for the idea. We have used lanyards for the sea passes for many cruises, but when we are in the room I tend to hang them on the wall, and he has to be reminded to take it, so he probably wouldn't have it if I wasn't with him. He is really excited about this next cruise, as am I. I am hopeful that all will be well. 

[GeezerCouple]

Call the cruiseline's Special Needs group and discuss this with them.

At the least, that way, the crew will know she is one of the passengers who might need special assistance... for mustering and possible also if they notice any potential issue...  (This won't be the first time they have encountered this situation.)

 

Ask if the ship might have some sort of token that the crew would identify immediately as "a passenger who *might* need help", so if they see her alone... etc.  Perhaps a bracelet, or maybe a bright sticker on his card, making sure it's on a lanyard and visible at all times, etc.  You might want to make sure she keeps hers "on" even when in your cabin, in case she leaves.  You can keep yours on, too, so it will seem that "this is the way we do it", etc.

 

The "bells" reminds me of decades ago, when I took my two young children backpacking. Their backpacks included... a stuffed animal, footed pjs, a very small blankie, and a few other things, and each of them had a Sierra cup dangling off, just as the two adults did.  Except the two adults' backpacks each included two sleeping bags and a small 2-person tent.  I tied bells to the closures on both ends of "their" tent.  It work well. Too well!  Almost every time one of them turned over, there would be at least some "bell noise". 🙂 

But it did work; no one was going anywhere without my noticing!'

 

Enjoy the cruise!

 

GC

[FOPMan]

You might think of also taking a picture of him every morning after dressing. That way, you have a very current photo to help in finding him if you were to get separated.

 

While neither my spouse nor I have mental difficulties, each of us has a disability with obvious manifestations. On several HAL cruises (smaller than the Pinnacle ships), the ship's crew recognized our being a couple and for the rest of the cruise, if we were separated, we usually got an update about where the other person was, in case we were looking for them.

[frteach]

Photo is a great idea. I will do that. Thanks for all the support. 

[GeezerCouple]

6 hours ago, FOPMan said:

You might think of also taking a picture of him every morning after dressing. That way, you have a very current photo to help in finding him if you were to get separated.

 

Yes, taking a photo is an *excellent* idea!  Then not only will you better remember exactly what she looks like "today", but you'll be able to show it to others (including Security) if you get separated.

 

Something else, longer term, might be to consider an "ID bracelet", the kind that can be engraved. Sort of like a MedicAlert bracelet, but with contact info, such as your phone number and a special e-address, or something like that... just in case...  

GC

[JFontaine]

I would definitely ask for a wheelchair assist to embark and disembark, where you can have long walks up and down inclines and over thresholds with carryon bags and documents and people rushing around.  No need to get off to an exhausting, rough start. We tip the wheelchair pusher $5/$10 - there could be more than one, so have small bills handy.  

[FOPMan]

My apologies- I inadvertently flipped the gender of the individual.

 

 

[Splinter]

Have you talked to her physician about this? Generally is is discouraged to put a person with advanced dementia into an unfamiliar and new environment, even if accompanied by long-time family members or companions. This may exacerbate her symptoms and be very frightening to her.

[frteach]

Yes, we have medical approval, and thanks for your concern. I am really trying to make this as stress free as possible for both of us, but things will undoubtedly come up. After the trip I will report about how it went on this forum.