Sailing with Alzheimers - Trip Report and Tips

[Jennifer777]

Curious if the balcony was a concern for you as well and if so how you handled that?

For us the balcony was not an issue. Between my Mom's mobility issues and the fact that she's barely 5' tall, it would have been very difficult for her to climb up onto a chair and get high enough to where going over would be a possibility. We still observed her and for the first couple days we were always out there with her, just because you never know how they will react but she loved having the balcony. Our room was 3 traditional verandahs wide so it was very spacious and it was always warm out there. With 3 patio doors we could always see her when she was outside and we were in. This gave her the chance to be alone, which she craved, without putting her at risk.

One thing I would note... I have seen some people on here (not you, but others) promote using magnets on the door to help people (with or without Alzheimer’s) locate their stateroom. That I would caution against as magnets can walk away - either completely or to another door which would cause great confusion and anxiety. Decorations? Sure. But don’t depend on them for cabin identification.

We had magnets, stockings and an FE "walk away" on our ship so I would wholeheartedly agree with you on this. Even if your person is in the early stages, they should not be left to find the stateroom alone. If the disease has progressed enough for them to receive a formal diagnosis, they are at risk for becoming confused and lost, especially in a new setting, even if that hasn't happened before.

 

[dcassetta]

Muster Drill: Talk to your room steward immediately and find out where your muster station is. If it requires flights of stairs that your person can't handle, arrange for a wheelchair. Prepare them ahead of time for the crowds and noise if that's a trigger for them. Don't go early if you can help it. You'll likely get stuck in the back and it will just mean more standing if your person isn't in a wheelchair.

One possible solution to make the Muster drill easier is to book a cabin where you muster inside. It might be more comfortable for a person with special-needs if they can muster in one of the restaurants, lounge spaces, or theaters.

 

[Weedy]

Disney has recently relaxed their rules for people with Autism attending the lifeboat drill. One person in the party needs to go with everyone’s key cards (possibly everyone needs to go early and then leave?? Can’t remember) Maybe they would allow someone with Alzheimer’s to do the same. It’s worth looking into.

 

[mevelandry]

Totally not related to Alzheimer but my mother died from bone cancer and I took care of her during her last years... This thread is beautiful and it makes me tear up a bit. There is a lot of love behind all this and we can feel it.

Just wanted to let you know that what you are doing for your mom is amazing.

 

[bumbershoot]

Ok first, don’t best yourself up foenthe things you’re beating yourself up for! No one is perfect, and it’s impossoble to anticipate everything.


Thoughts...

I also hoped that having the same dining team would make dinners more comfortable.

I wanted to make sure you know that on other lines you have the same team each night AND you’re in the same *room* each night. Might make things even easier to have the same room, rather than changing physical spaces and having servers in different uniforms each night. Just in case you’re considering another cruise.

And I’m pretty sure that suites on Royal got priority bag drop off in PR.

Not sure what security measures Disney might have that others don’t; I’ve never noticed anything different security-wise between Disney and Royal, for instance.

Also, if your "person" needs to visit a public restroom, even if the person is mobile, it's a good idea to follow them to make sure they return without getting lost. DMIL got lost after using an airplane lavatory. Her seat was in 1st class.

That exact scenario might not allow for someone to go with them, at least not without a discussion with flight attendants. You can’t form a line at the front bathroom, so the FA might not easily (or at all) allow it.

For this reason my sister and I chose not to pack on the final night until the last minute or even talk about packing or leaving in front of her, knowing it would stress her out. Once we started packing, she was a mess.

I wonder if packing as you went might have been good, too? Instead of putting dirty clothes in a hamper each day just put them into the suitcase? As each item is used for the final time (if there are special shoes for an outfit etc) they just get put all the way away?

For my mom, she was much more stable holding on to one of our arms so we insisted she hold an arm wherever we went.

I was caregiver for my then-MIL for 5 years. I started as she started having strokes and got the diagnosis of vascular dementia. She’s physically very frail and insists on wearing slip-on shoes with a heel, so she’s even more at risk of falls.

She always wanted to hold an arm. She didn’t recognize that that made it MORE likely she would fall, as I wasn’t *that* much bigger than her, and despite being strong I would have had a hard time catching her as she fell, and if she did fall it would have injured me, too.

She would also hold on to my son; he might have quickly grown taller than us, but he’s still a kid (he was only 8 when the strokes started and she got that diagnosis and prognosis) and doesn’t deserve that responsibility.

I had to make her use her walker for everyone’s safety.

 

[Quellman]

This was a well thought out and executed series of posts. I am glad you are getting to make some memories with your mom, but sad for the circumstances in which you have to make them. It is a truly terrible disease where the person you know just vanishes from you. May you find peace and comfort in the coming time.

 

[cruisehopeful]

Beautiful post. Thanks so much.