Cruising with dementia

Chernabog#1fan

DVCOwner
Joined
Jan 28, 2007
We recently had a family member be diagnosed with dementia. It is in the early stages and no one really knows how quickly it will progress. I was looking to find out from other people though if you have cruised with a person with dementia. The relative has always wanted to go on an Alaskan cruise, but we do not think we could pull it off this year. We would try for next year which means it would be a year more progressed, no telling what that will look like. What were your experiences like cruising with a person suffering from dementia?

Thanks in advance!
 
We never cruised with my father in law with Alzheimer's but I can tell you that hotel rooms were a nightmare. He was extremely disoriented being outside of his normal surroundings and kept trying to get out. My mother in law was up with him nearly all night every night, worried he would get out the door and wander the halls. I would definitely not get a verandah.

If you're not familiar with dementia, there are a lot of other things that you might not be aware of that can happen in addition to confusion, memory loss, etc. There are a lot of emotional things that go along with it, including intense and strong anger. My father in law would get very angry, almost a child-like temper tantrum, out of the blue, for no reason. It was scary for everyone, especially for a physically strong man, like he was. This can come out of nowhere, but often happened most when he was in unfamiliar surroundings/people.

So, I really don't know what's going to happen with your loved one in a year, but I'll be honest, there's no way my father in law could have gone on a cruise later in his course of the disease. Maybe really really early on.

My thoughts are with your family as you navigate this situation. It's a very difficult journey to go through and many people simply don't understand what loved ones go through who care for someone with dementia/Alzheimer's.
 
I have nothing to offer other than my heartfelt best wishes for you and your family. I was very close with my grandfather and the most heartbreaking thing I ever witnessed was watching him, literally, disappear with each passing month. I miss him so much, and it's the memories of "him" that I am clinging to.
 


I don't have experience with cruising with someone with dementia, but my experience with family members with dementia is similar to what anricat described above.

My advice would be to try your best to arrange the cruise for this year. You just don't know how far the disease will have progressed by next year. It may progress enough that the trip won't be possible or that your family member wouldn't enjoy it because of the dementia.

My daughter and I had been wanting to take a cruise with my parents. We'd talk about it but it never seemed to work out to schedule it. Then about 15 months ago my father was diagnosed with an aggressive form of bladder cancer. I actually found out about the diagnosis by reading an email from my mom while we were on the Magic. The doctor was very encouraging that it was caught early and would likely respond to a immunotherapy treatment. It didn't and the cancer spread. There was a point last December when we thought our time with him was going to be measured in months. Luckily, the cancer responded to an aggressive course of chemo and radiation and he is currently in remission. A few days after his chemo and radiation ended, and he was told he had a 2 month break while they monitored the progress, I called and invited them to go on a cruise with us. We booked a 3 night cruise on the Wonder sailing less than 3 weeks later. We had a marvelous time, and I'm so grateful we were able to do it because we almost lost out on the opportunity to have that time with him. We took for granted that there'd be a next year, until it smacked us in the face that no one is guaranteed a next year.
 
DMIL had a great time on our extended-family cruise, but as the plane took off on the way home, DMIL asked, "Where are we going?" She had totally forgotten our cruise and thought we were just beginning a new adventure.

My sister has full-blown Alzheimer's and her DH didn't even try to take her to our step-dad's funeral last winter. She's always cold, gets lost even in familiar territory, is paranoid (but how do we know that nobody's out to get her?) and repeats herself four times in five minutes. She only eats a few bites each meal -- she wouldn't be interested in most of that yummy cruise food, and would be anxious to leave the dining room before the main course was served. It's so hard for her DH. She is off in la-la land and just doesn't know what's up.
 
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I would be inclined to go this summer if at all possible. Price out other cruiselines, look for last-minute deals that DCL doesn't offer. I'm not sure what prompted the diagnosis, but my guess based on past experience is that the family will be remembering bits here and there from pre-diagnosis days that indicate it was "there" before anyone realized. For us, once it was diagnosed, everything seemed to progress more quickly than we expected. I'm not sure anyone would have felt safe cruising once constant (or even near-constant) care was necessary, even if you do not have a verandah. Words/language start to become lost, so it might be difficult for crew to help a lost person who cannot offer names of traveling companions, etc., and will likely be more confused than usual in that setting. And they just aren't going to enjoy the trip once the disease has progressed to a certain point. There probably aren't going to be many folks who cruise in this situation, I'd have to think.

My heart goes out to you. Grab all the moments you can now.
 


I'm so sorry, but I don't think it will work that far from now.

My mom is a nursing home director of nursing, and she specializes in dementia and memory care, and I've volunteered in her home for years. As much as it sounds like a wonderful gift, and it comes from a wonderful place, people who are being enveloped by dementia are desperate to cling to things they remember. If they are in unfamiliar surroundings, it can be extremely upsetting for them. They are trying to hold on to the most basic things, like who they are and who you are and where they are and why you are here. Putting them in a new situation with radically different things, exactly what you want out of a vacation, can make them depressed, anxious, upset and combative.

I know what you want to do. My grandma had severe dementia in her last year. I wanted to see her so badly, but she was regressing and losing us so quickly. When I talked to her, I couldn't mention my son because he is named after my father, who died when he was 22. Grandma didn't remember that, so when I talked about Joey, she thought I was talking about her son, and it confused her and then she would realize that there was something wrong with what she was thinking and would struggle to get it back, and I think she knew that whatever it was, it was painful, so it made her angry. For her sake, and admittedly for mine too, I didn't come back to see her before she was gone. I didn't want to be the one who made her remember that her little boy was dead. She deserved more peace than that.
 
I am so sorry. That disease is very hard on family. I don't know about cruising, but I know my dad with dementia, can become very confused, disoriented, anxious and aggressive when traveling or in unfamiliar places. Too that extent, my parents plan short getaways that my dad can tolerate. If at all possible, I would try to plan a big trip like that sooner rather than later. I wish only the best to you and your family. I hope that you can plan to make a memory that you will all enjoy in the future.
 
I would look at Princess for Alaska. They have multiple boats and itineraries and a lot more choice than DCL for that destination, which would make it easier to possibly book this year.
 
:hug: So sorry you are dealing with this horrible disease.

We never cruised with my father after his diagnosis, but we did some traveling with him in the early to mid-stages. It's really going to depend on how quickly his disease progresses whether or not a cruise next summer may be possible. I say go ahead and plan, knowing that you may need to cancel. Try to do it sooner rather than later, but if you absolutely can't swing it for this year be sure to get trip insurance immediately once you book so you can get a PEC waiver. My dad was able to travel for a few years after his initial diagnosis and symptoms.

Consider all aspects of the trip, not just the cruise:
  • how will you get to the departure city (fly? drive? train?)
  • what ground transfers might be needed (bus, taxi, limo, etc.) - you may want to try and limit as much as possible whether for site-seeing or moving from point-to-point (there's a hotel at the port in Vancouver so you won't need another set of transfers to get to the port for embarkation)
  • any pre- or post-cruise hotel stays (we found HA rooms to be beneficial particularly for the toilet and shower hand rails, bath bench and ability to assist with showering), you may even want/need connecting rooms
  • also consider safety in a hotel room if he gets up at night disoriented and/or wanders
  • restaurants for meals (dad had trouble deciding and ordering as well as the chaos of a busy restaurant -- multiple by every meal when on vacation)
  • personal care -- at some point they just literally cannot manage their own needs from bathing to dressing to cutting their food; it may be progressive or it may be like a switch is thrown without warning
Best of luck to you and I hope you get to make the memories of his dream Alaska cruise!
 
First-- my thoughts are with you. Dementia sucks.

Second-- many good thoughts and ideas already posted.

Third-- my experience having watched my mother through "the long goodbye." In her most early stages, we could have taken her on a cruise and she would have been ok, as long as people were around her so she didn't get lost on the ship. In middle to late stages, it couldn't have worked.
She did one road trip in her early stage with my brother and dad, and it was trying on my brother, because I think at that stage (she wasn't formally diagnosed--this is looking back and realizing we didn't always see the early signs) she was just asking lots of questions, very particular about food, maybe a bit distracted.
There would have been one last trip to her favorite place in the entire world--the Grand Canyon-- if we hadn't had that stupid government shut-down several years ago which closed up the park lodges and amenities. After that trip was cancelled, she was progressing enough that a long airplane or road trip would have been too much.

Things to consider, and you didn't say what stage your loved one is at-- travel stress, how easy does the person get lost, do they have peculiar/picky eating habits (can be dealt with, but can be a pain), attention span, and in later stages, personal care. Everything, and I mean everything, takes longer, and depending on the stage, constant need for re-directing cues may be needed.

If you are early enough, this cruise may be a good memory (and I'd go sooner rather than later, as everyone else said). Every situation is different, but it all gets pretty heartbreaking in the later days.
 
One thing to consider if you do go is having some kind of identification such as a medical alert bracelet that the person can wear with information as well as something cruise-specific. I would NOT depend on magnets on the door just in case people get mischievous and move them.

Also, something to note in case depends or adult diapers become necessary, at least on DCL they will not bat an eye if you request a diaper genie. My dad has to wear depends after prostate cancer surgery (he is fine, thankfully), and our cabin steward in Feb on the Magic didn't even blink and it was in the cabin before dinner.
 
I would say that in this case Trip Insurance is a must and do not get it from Disney, also make sure that it is one that covers preexisting conditions. There are websites out there that can help figure out which is the best for you.
 
I would say that in this case Trip Insurance is a must and do not get it from Disney, also make sure that it is one that covers preexisting conditions. There are websites out there that can help figure out which is the best for you.

I normally always do trip insurance! To many risks out there. I am just not sure that it would be wise to wait, but the only one I think we could swing would be in September and my daughter starts college and my son starts high school in August. It is so aggravating! I am wondering though if he would enjoy a cruise on the Fantasy at least as I think we could swing that before school starts. Decisions decisions....
 
Thing is, you don't know how fast it will progress. Could be fast, could be slow. I've had two older family members with dementia, and a third starting now. Never took them on a cruise, but have taken them on vacations, especially in the early stages. It's going to be hard anywhere. Having a few days where you don't have to worry about cooking and cleaning might be a nice break. I know the CMs will do their best to help.

The other thing is that personalities differ quite a bit depending on the person. Not due to the personality they've always had, but how they react to the condition. I had one family member, who got disoriented and scared and sometimes had outbursts like PP said, even though before they were quite calm. Another family member would tell the same few stories of childhood over and over, and couldn't do anything except what was put in front of them, but they didn't care where they were, surroundings-wise. She traveled well with us for years until she became physically weak also.

So I'd say, yes, go as fast as you can, but don't say, "I won't be able to do it in time, so I won't try." Try it. Book whatever. You can always cancel if things go downhill (get the trip insurance right way so you can get the pre-existing conditions waver). When that time does come, you want to know that you did as much as you could with that person for as long as you could. It will mean so much to you and your family and make the time to come a little easier.
 
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I've had family members who had dementia. It can progress pretty fast but there are no way to predict how the person will be. It's hard and travelling with a person with dementia is a huge responsibility.

IF you decide to do it anyway, do it as fast as possible. Do not wait.

I think you'll have a hard time getting an insurance one way or another because it's a pre-existing condition. Ex: When we took insurance for our April cruise, we were told that if my husband's uncle with terminal cancer was passing right before or during our trip, we wouldn't be convered for cancellation or interruption because we knew he had terminal cancer at the moment we took the insurance. (He was not travelling with us).
 
I wouldn't do it.

My Grandfather's Alzheimers wasn't really advanced when I went to visit him in his INDEPENDENT LIVING facility. (Before we moved him to be near family.) I tried to take him with me running errands. He got stressed out and had to return home. We were less than a mile from home at that point. He just couldn't handle that kind of change, he couldn't process it and it scared him.

Who knows, hopefully your loved one won't progress much.

But in my grandfather's case, its not that HE wouldn't have enjoyed the cruise. Its that NONE of us would have enjoyed the cruise. Oh, and he got agitated, which is a nice way of saying violent.
 
I agree with others. Do it now, rather than waiting. It is sweet of you to try for the Alaskan cruise, to do something he always wanted. However, I would urge you to focus less on that, than on the reality that this may be your opportunity to take any vacation before things go downhill. So maybe think about a vacation that is doable now, maybe just a cottage at the beach or in the mountains.
 
We took my Grandmother on the Wonder in 2010 when she was in the early stages of alzheimer/dementia. We had lost my grandfather the previous year during oa complications from Alzhiemer/dementia. The crew was very accommodating and helpful. She would get confused going back to her cabin and the room attendees would help her. We did a last WDW trip in 2011 about 14 months later and it was really hard for her to the point of being overwhelmed. Didn't even attempt to bring her with us on our 2012 cruise about 30 months after the original cruise and it was from NYC and we liv only 20 minutes from Port. If at all possible I would do it ASAP.
 

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