My wife has moderate dementia (Alzheimer's). Any advice for how to deal with her on a cruise ship?

Rh, would love to know how your cruise went?

Seven years ago, my husband who had been diagnosed with only mild cognitive impairment insisted on leaving on day 2 of a 2 week trip to Italy. Leaving in the middle of the night and getting him home was a nightmare I'll never forget. Since then I've tried overnight trips ... all are nightmares. Never again.

I’ve done the cruise with dementia spouse, no family, and I loved it! There was lots of entertainment which my spouse enjoyed. I never left him alone and so I “wandered” with him, walking around the ship.
He was not then incontinent. Your taking a shower is the difficult part because spouse does not stay put. So, work something out! I opened the bathroom door which blocked the exit door.
Despite all the grave concerns of others, there is no one answer for all cases. You are in the best place to judge your wife's issues.

Are you lucky u are 2hrs away. Knowing what to expect going in should help alot. As long as you can go with the flow. I went the same time two years ago to Alaska. Weather was great. Enjoy!

Hello everyone, and sorry for not responding sooner. Thanks for all the input; it is appreciated although somewhat overwhelming!
Our cruise begins at the end of June. It is a 7-day cruise to Alaska in a cabin with a balcony. The adjoining stateroom will house my daughter and another person who I asked to come along specifically to help as a caregiver. That was one of the suggestions that was made on this forum.
No flights are required, just a 2-hour car trip to the cruise pier. We have been cruising many times in the past, so don't anticipate my wife being upset by being in unfamiliar surroundings. She gets out frequently when I take her on errands or shopping and she deals with that nicely.
I will let you know how things went once we return in mid-July.
:)

Would love to know what was decided. And if hevtakes her, how he made out,

I think Rh is gone. Likely cruising. Hopefully with his wife. And I long to hear his story on his return. I do just live for the updates!

Please leave her in a safe environment with full time care and go take that cruise with the rest of the family.

..."So as the sun slowly sets in the West and to the sweet refrains of Aloha Oe, we wish a fond farewell to rhcarle and his wife on their cruise..."

I continue to wonder how the OP, rhcarle, is doing. What did he decide to do? Maybe he and the wife jumped ship in Tahiti and they're living on Pitcairn Island where there's no internet.

We took a cruise for our 25th anniversary (1994), 30 years ago. My husband had been diagnosed with Parkinson's only five years earlier. Dementia was not an issue at that time. Our two teenage sons were with us so I thought we would be good. What I am sharing is from my experience, not necessarily the same on every ship and may be different now 30 years later. However, some things never change in that most people go on one to relax, party, and/or have adventure!

"I'm hoping that the family will help with caregiving, but I anticipate problems."

Yes, you will have problems unless your family has a strong desire to share the responsibility and support you all the way (which is unlikely in most families). Your family will be on vacation and may only help when it is convenient and probably not available when you need/want it the most. I did not want to hamper our son's enjoyment while wanting my husband safe and not left out of too much so I was caught in the middle. Unfortunately none of us were able to totally enjoy ALL the fun and adventure that we could have had. The question you have to answer first, do your family members already step up to help while you are not on a cruise. You will be the only one sleeping with one eye open and tuned into what she may need when both eyes are open. It can brew a lot of resentment among the family because they can't understand if you won't leave her asleep (or awake) in the cabin and you don't understand why they won't take turns to give you a break.

"Do I dare leave her alone in the cabin?"

As someone said, a cruise ship is not always totally stable but often rocks... which can feel very peaceful or upsetting to someone who can not understand why it is happening. The cabin doors are not the widest and the thresholds are a several inches high and can result in tripping. I made sure we had a window because as I was concerned how much time we would need to stay in the cabin. I would definitely not leave her alone because should she want to find you, the ship is a huge place to get disoriented and strangers not wanting to be involved. My sons and I often had to focus and think clearly to find our way around going and coming back to our cabin. The excursions were tiring which made my husband want to stay in one place when we returned... meaning someone had to stay nearby... meaning mostly me.

I would love to go on one again with my husband, but memories of responsibility come flooding back and I know we don't have the money to risk either or both of us not being able to enjoy the experience. I now have the added stress of "what ifs" due to his dementia and the biggest concern is if something happens and we need to return home before the cruise is over. Yes, cruise lines are very capable assisting someone with emergencies but I'd rather not have to wonder what will they do for us.

If after all the consideration, you decide to take her along here was the best part of our trip. When we saw we would be in line quite a while before boarding, I went to see if there was some place I could sit with him while our sons held our place in line. The crew member I asked, went and found a wheel chair. I thought we would simply use it while we were waiting. He actually took us (and our sons) to the front of the line, handled the registration, then escorted us all the way to our cabin! At the end of the cruise, the same person escorted us through the check out process to leave the ship.

I would be concerned not just about her confusion but even her mobility. A boat can sometimes have unstable footing. She could fall. I would only suggest taking her if you bring a full time professional caregiver. It’s unreasonable to ask family members who are unfamiliar with her care needs to step in to help. Remember it’s their vacation too.

Wow. I understand wanting to include her but this will be very, very challenging. Respite sounds like a better option

rhcarle: Do not bring her on the cruise. Instead, place her in respite care.

You are wonderful to help your wife have a normal life. It's difficult to take care of a loved one with dementia because with moderate dementia they need 24 hour monitoring. I was in denial about my mom and thought she could live alone since I live only 5 minutes away, a lot of horrible things can happen. Please don't leave her alone. It may be time to hire someone to care for her or place her in assisted living.

My mom escaped memory care the first week she was there. She still passed for "normal", people didn't know her yet, and she left through the gates behind a therapist with her purse. She was found on the sidewalk 2 blocks away by paramedics and spent 3 days in the hospital. I didn't find out until we got home from a nice dinner (the first in months) in the next town over. I thought I could leave my phone at home just that once. Nope.

She was fine, just a little banged up. But my point is this. Do not simply place her in a facity she is unfamiliar with and leave on vacation. If she is ever placed in a facility, wait about six months until you are confident she is mostly adjusted. Then you could probably get away with going for a long weekend yourself.

Personally I would not bring her.
At home she is comfortable, she knows you and her surroundings.
let's not even get to the cruise ship yet...the trip to the airport will be one thing. Getting through security (if you do go please arrange wheelchair help to the gate) may be a challenge then all the people at the gate, the flight, once those doors close just hope she remains calm. (If you decide to use medication to keep her calm do know that can make her a fall risk) then reverse all this once you land and get transported to the ship.
Once on the ship the confusion, the people, the lights, noise...very confusing.
If you do leave her in the cabin, (and I would hope you would not leave her unattended) she will be confused with the new surroundings.
She will want to go home.
To ask family members to help in caregiving is not fair to them for their vacation.

You could bring a hired caregiver with you that their sole job would be to care for your wife. but that is an expense to you and it may be difficult to find a caregiver that would be able to do this (passport needed) and it would be very expensive.

I would find a Memory Care facility near you, check out a few and do a Respite Stay of 1 or 2 weeks however long your trip is, make the respite at least 2 days longer this way you can bring her the day before and pick her up the day after you get home, gives you a chance to pack and unpack.
You deserve a break. Use this as a way to get a chance to relax.

I personally wouldn’t do it with my mom. I have been on a cruise where someone had a medical emergency and they had to be taken from the ship. This could cause issues for you. In addition it wouldn’t be fair to the other passengers as this sometimes causes the ship to have to miss a port of call because of time constraints. My son recently went on a ship, this happened to him. They missed a stop because someone in poor health had an emergency. One thing to think about is it could be risky for falls. Some parts of the ship you will feel more movement. I’m with others who recommend respite care. A break from being a caregiver might be needed anyhow. Hope it works out.

Having gone through this, I would suggest you get a relative or good friend to keep her while you are taking a break.
I had tickets for a cruise when my husband displayed unsafe moments, wandering, etc. What to do with the ticket? I took him on the ship anyway, but had to keep heavy eye on him. Check with the cruise line, if there are any caregivers on the ship to see to him while you are out having family time and enjoying the shore. Sometimes they do. I found a place in my town where I placed my husband while I went on the cruise. We had already paid for the tickets so I took my sister with me. I placed my husband in a facility for the 3 weeks or so that advertised this kind of "baby sitting" care for dementia patients. It worked for me. He didn't even know I was gone. But the facility told me he waited at the door a lot, and looked out the window for my return.
I had no one to take or buy the tickets from me, so I arranged for this type care. Call several care companies to see what they offer. If you can't find any, call the Alzheimers group and they may have info for your area. on places to put your loved one while you take a break. I did that. Worked. Yeah, he stood by the window looking for me the whole time, but the facility was great. Escorted hm to a dining area for people in same situation,. Took him for walks and to play games or watch a movie. He really didn't even know I was gone. I had the tickets, didn't want to waste those thousands of dollars, took sister, and all worked out well.

Another thing occurred to me- this from someone who has not taken a cruise - so my knowledge is strictly from news stories, and I recognize that they are frequently sensationalized and we only hear about the "bad" things and it's likely that most cruises are far safer.

But God forbid you found yourself in any of the scarier cruise scenarios - bad weather, an emergency drill, illnesses on board, taking her off ship and missing the ship, power outages for examples - you are already playing with fire with just the change in location - how would she handle much more difficult situations - especially when she can't get off of the ship to her home? What if you found yourself in an emergency situation where she needed to be sedated?

I guess my point is - is it worth the risk?

Yikes! Your whole scenario scares me!
I would NOT take someone with Alzheimer's on a cruise ship!
Maybe - if she has round the clock supervision and care. But, really, who wants to do that while on a cruise?
No, Do Not leave her alone. Especially in a strange place. She is likely to not recognize her surroundings and get scared. She is better off at home with a caregiver, or a short term stay in a memory care center, while the family enjoys the cruise. Take lots of family photos to share with her when you return.

No, you DO NOT leave her alone in the cabin.
You hire a caregiver to be with her at all times (when you / others are not).
If you know she 'gets scared when by herself,' I question why you do not know the optimal / necessary stance to take.

I question if she 'should' go on this trip considering her brain chemistry and your knowledge of how to handle critical situations. Get a CNA to accompany you on this cruise. She could easily / possibly get very frightened of anything ie the water, the waves, the motion on the ship. Do you have a back up plan if she 'sees things' that are not there / not happening? If she gets very frightened? Do you have / have you discussed medication management with her MD?

You need to really think through this trip.
You need to put her needs / welfare FIRST.
You need to educate yourself about Alz / dementia.
You need to speak to her MD.

Gena / Touch Matters

someone in my support group told a story about how her first flight began. Her LO who hallucinates, saw a wallet in one of the TSA checkpoint bins and pocketed it. Many saw him. It took about 15 minutes for TSA agents and his wife to convince him it was not his own wallet. Wife had to tread lightly with husband because his anger could quickly come to a boil thus endangering him.
My husband's mom had thrown away her state ID since she was no longer driving and we found out the day before a domestic flight. So always hold onto the LO's important stuff. She kept packing and unpacking her suitcase before and during the trip.
My mom's last trip for me was when we discovered she was beginning to be incontinent at our rental with brand new mattresses.

No, never leave her unattended. Especially on a ship. Talk to family now to set up a schedule to have someone with her at all times because you never know when she will need to return to cabin for a little rest or get away from activities.

If you get no commitment from family, you might want to see if there is still availability for another room and find a friend that might want to go too, for sole purpose of helping you out. You pay their fare.

The OP has not repliedvsince June 1st.

I took my husband (with mild-moderate dementia) on a relatively easy trip in 2017--non-stop international flights and two short hops in Europe plus some driving. I came home completely exhausted! I don't even remember most of the trip, and I know he doesn't. He wasn't sundowning (yet) nor incontinent (yet) but was confused by the changing environments. When I thought I could leave him for a short time and he'd stay put, he wandered away. After that I couldn't trust him even to go to a restroom by himself. Our son and daughter-in-law were with us part of the time--a real eye-opener for them. (I did not expect them to participate in his care and supervision.) My advice: don't even think about taking her! No one will have a good time.

This question comes up so often .
The cruise ships ought to add respite care right on the ship !!

All due respect OP, if you choose to take her, this is not going to be a vacation, family or otherwise. And it is entirely unfair for you to expect family members who are expecting a nice, relaxing, family cruise to take on caregiver duties, if I may be so bold. I know you mean well, I really do. And I know that the vast majority of people automatically think that "it's what family does". But the reality is that most people don't want to have added responsibility on their vacation - that's usually the one time they want to relinquish as much responsibility as they can.

And I know that "helping mom" isn't in the same category as "doing dishes" and "cleaning". But let's be honest. You will be on a floating city in the middle of the ocean. The cruise crew will not be looking out for your wife if she decides to go on a walkabout - not because they aren't doing their job, just because plenty of people walk around on a cruise ship at all hours of the night and day. They might not even realize something is wrong until it would be too late to do anything to help her. Which means that you and your family have to have someone awake and alert with her 24/7. Which also means that family members will have to take shifts to be with her - even if she is asleep - because she might wake up. And that means that some family member won't be able to actively participate in that next day's activities.

I know that's a rabbit hole - but your family may not take kindly to having their expensive cruise commandeered for keeping an eye on mom/grandma/auntie and not being able to fully enjoy the experience. Which means it might all fall on you - and that means YOU won't get the fully experience and won't get to spend the time with your family that is intended.

It is with no offense that I say all of this. But it is important that if you are going to go on this cruise, you find respite care for your wife, either in a trusted facility (preferably in this case - so there isn't any real chance of her leaving and no real chance of there not always being someone working) or 24/7 home care with shifts (but that runs the risk of someone not showing up. Respite care is really your only option and you won't likely have any contact offshore once you leave.

I don't recommend taking her with you. You won't have any vacation to speak of and honestly - it may make things impossible for everyone involved.

Oh my goodness... You have the idea right there says she sundown's, is incontinent and easily scared/ anxious.
I took my husband w Alzheimer's for only a 3 day family cruise and he hated it.. he was so discombobulated confused. He was Anxious and Overwhelmed, also, it was very stressful for me, I could never relax even for a minute for watching over him... and he was only stage 4.5 at that time.
I do not recommend it at all. Best wishes.

Hello, I have just come back from a 13 day trip to England, returned May27th, with my husband who has dementia aged 89. I am glad it is over. It wasn't really a holiday/ vacation because I wanted to see if I could return to UK to live and I also wanted my Husband to meet his son for the last time. But we couldn't do much.

It was not fun. It was stressful and a lot of work for me at age 74.
You cannot just leave them and even at nights I found he woke up and he wandered a bit which he did not do at home.

Going through the airport actually was not as difficult as I thought as the staff at both ends were wonderful and on the way back I got a wheelchair too.

My advice to you is stay at home or take day trips, or get someone to stay with your other half at home.
You won't enjoy it, I know!

Travel with an aide. She may do it for free if you pay for her trip. When you’re with your mother, then she can have time off to enjoy herself. Otherwise, there is really no easy safe way to do it, at least in my estimation, having taken care of my wife by myself for three years.
after posting this, I read a bunch of the comments below. There were a lot of things I didn’t think about and I agree with a lot of them. Don’t take her. Provide some care instead.