She experiences sundowning and occasional incontinence. We are going on a family cruise in about a month. I'm hoping that the family will help with caregiving, but I anticipate problems. She often likes to sleep during the day as well as at nighttime. Do I dare leave her alone in the cabin? She does not currently want to wander when alone at home, but she can get scared when by herself.

I've done it with my mom. We took her 24/7 caregiver along, and even so, I would never do it again or advise anyone else to do it.

You'll need a handicapped bathroom because that gives more maneuvering room for those who help with showering and toileting her. You cannot leave wife in the bathroom alone because she might throw things into the toilet that shouldn't be there. Even if she hasn't done such a thing before, she's not going to be in her safe space, and you never know what they're going to do. Toilets on a ship are different from those in our homes. She may be scared of the noise and action. Also, your wife should be wearing disposable underwear if she has accidents. That's a lot to dispose of on a ship, where amounts of trash and garbage are a huge problem anyway. Accidents in public are another thing. Other passengers might not be understanding about the smells and visual aspects. They're there to have a good time, not to put up with sickroom issues.

Expecting family to help on a ship is unrealistic. They have no idea what needs doing, and family often isn't helpful on dry land much less on a ship.

Years ago I was part of a friends-and-family group on a one-week cruise. One of the older men had Alzheimers in an early stage. While his wife was in the shower, he left their room and started wandering around the ship asking people where Margaret was. It ended well but could have been disastrous. What if he'd somehow climbed into a lifeboat and no one could find him? What if he'd leaned too far over the railing?

Please don't take your wife on this cruise. She isn't as she was before, and it's not fair to her to expect her to handle situations as if she were still normal.
Helpful Answer (28)
Reply to Fawnby
MiaMoor Jun 2, 2024
This is really helpful first-hand experience, Fawnby.
I took my mother (who had moderate dementia) with me on a lovely cruise a decade ago. It didn't go well.

She urinated on the beautiful hardwood floor in the ship's gorgeous spa, much to the horror and surprise of everyone present.

The next afternoon she fell in the dining room and had to be evacuated from the ship to a local hospital. I had to frantically pack our belongings and leave the ship with her while we were at port. The ship sailed on without us.

I learned my lesson the hard way.
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Reply to LostinPlace
BurntCaregiver Jun 1, 2024

What an ordeal that must have been for you.
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You should not take her on the vacation. Even if your family agreed to help with her care, why do this? No one will enjoy themselves if they have to babysit a scared, demented senior who is also incontinent. Don't ruin the vacation for yourself and your family by taking her.

Taking a person with Alzheimer's out of their usual surroundings and disrupting their routine is always a detriment to them and it also causes setbacks in whatever level of independence they still possess.

Your wife will not enjoy herself on the cruise. What will likely happen is she will grow increasingly scared because she's away from her normal environment and this will cause her to panic. The panicking will then cause some regression in her cognitive ability. This will also lead to her becoming more incontinent. Why put her through that?

Spend whatever it would cost to bring her on a private caregiver who will stay with her in the home while you are away. Or put her in a care facility for a respite stay (Medicare pays for up to two weeks a year respite in a care facility). Then hire a private caregiver to go daily to visit her while she's there.

I think this will be the best for you, her, and your family.
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Reply to BurntCaregiver
MiaMoor Jun 1, 2024
I also thought that this experience could cause a setback and further decline in her cognitive ability.
I am probably pessimistic, but I like to think I'm a realist. I suppose it depends on one's POV.
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I just want to say one more thing, prompted by Fawnby's comment.

As her husband and carer, it is up to you to ensure that your wife's dignity is maintained. Please consider if that will be possible when you are taking your wife into a public space for an extended period of time.
Your wife has occasional incontinence and she is sundowning; these could expose her to unwelcome attention in a public space. Also, having family members assist with looking after your wife could mean that they will be present during situations that, before her dementia, your wife would have been loathe to be seen in.

Following spinal surgery, when my mobility was severely limited, I was resigned to the fact that I needed nurses and carers helping me with intimate tasks - toiletting and bathing - but I would have been more than humiliated if other members of my extended family had been present.
Professionals know how to preserve one's dignity, and this is paramount even when the person being assisted with personal care has diminished awareness.
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Reply to MiaMoor
ElizabethAR37 Jun 7, 2024
Absolutely agree! I would be horrified--yes, HORRIFIED!--to contemplate the possibility of having an "accident" in a public place surrounded by gawking strangers. Unless I were in the latest stages of dementia, I think I would retain at least some sense of personal dignity. Occasional incontinence is mentioned as an existing issue for OP's wife. I hope that she does not experience this potential scenario.
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Let me simplify things here for you. Do you really want to have to deal with a scared, hysterical, incontinent Alzheimer's meltdown in the middle of the ocean? Or on the flight to get to the ship?

Please keep in mind that only a few months ago a plane in fight had to make an emergency landing and be grounded because someone was incontinent in the aisle.

Granted the person 'couldn't help it' but still. Your wife will not be the only person on that flight or ship. There will be people like me whose time off is precious and very limited. I work six a days a week, I don't deserve to have my vacation ruined because a flight has to be grounded because of incontinent or because some demented elder or child is having a meltdown. Please consider everyone else taking a vacation on that plane and ship.
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Reply to BurntCaregiver

Airlines will not appreciate an incontinent senior, nor will the passengers. The TSA screening is intimidating. Taking shoes off, Xray machine tube and more. Airports are exhausting and cruise ships are big and full of strangers and activities. That would frighten and crush a dementia patient like a soda can!

Why should your family (that paid plenty for their cruise tickets) be even expected to help with her care on their vacation? Did any of them offer? That is selfish to even expect of them. If she likes sleeping all the time, why on earth bring her?

Arrange respite care for her (so she won't be alone) and take your trip. Tell her the house has termites, you both have to leave a week while they tent and spray it. She is staying in a "nice hotel" while you must stay behind to supervise the repairs. You said yourself she will sleep most of the day anyway. The time will fly. You will have a well deserved break.

Do the right thing for EVERYONE. Bon Voyage!
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Reply to Dawn88

Hire a caregiver to watch her. She should not be left alone in the cabin or anywhere. Some of these cruise ships are like their own floating city, with over 1000 people on board. How would you find her?

If you aren’t sure family will help, they may not know how much her illness has progressed. Not a good sign.

You may think she’s safe alone in the cabin but remember, she is in a whole different world… she’s never been there before and it may frighten her to be alone in a strange place. What will you do when she wants to go home immediately? Will she be able to enjoy dinners and all the other fun stuff on a cruise?

I also vote “don’t take her”. I understand it’s maybe a last hurrah before it gets really awful…. But this is not going to help you feel better when she can’t enjoy herself and is afraid.
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Reply to LoopyLoo

I would not undertake this. Your wife will probably not enjoy it. Like said, you are taking her out of familiar surroundings. I think her cost of the cruise should be used for respite care in an Assisted living. Or to pay someone to be with her 24/7 in your home. This is just me, but I would not want to pay the cost of a cruise where I would be required to help care for someone with Dementia. I am there to enjoy myself and go on excursions with no responsibilities. Its like taking a small child, you would not leave them alone.

I was invited to my niece's wedding 8 hrs away. My Mom had been living with us for 20 months and in the 6/7th stage of Dementia. She was incontinent. She only lasted about an hour when we took her out, ready to go home. I knew she would not make a 8hr drive and she would have no idea what was going on at the wedding. I wanted to have some time away with no worries. I checked out a local AL and they agreed they would take her in Oct. I was told though, a 50% sale was going on for room and Board. This meant Mom had enough money for a year in the AL with hopes of her house selling. So I placed her then, August. She acclimated very well. For me, it was a good decision and I was able to enjoy my nieces wedding knowing Mom was safe and cared for.
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Reply to JoAnn29
lealonnie1 Jun 1, 2024
Agreed. If I was invited on a family cruise and asked to look after someone with Alzheimer's, that would be a hard NO for me.
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.
Helpful Answer (14)
Reply to CalGal43
JoAnn29 Jun 7, 2024
And youvwill pay for that additional care big time.
I know you want to take one last family cruise with your wife included but unfortunately it sounds like that ship has sailed for this based on your wife's sundowning.

She cannot be left alone in her cabin, this means someone will have to be with her 24/7. Not exactly the vacation anyone wants to be stuck in a tiny cabin with a loved one who is sleeping or is sundowning and confused because everything familiar is gone and she cannot understand what is going on.

According to the the Alzheimer's Association patients should not travel if they have: Severe disorientation and agitation in unfamiliar surroundings, Delusional, paranoid or aggressive behavior,   Severe incontinence, Wandering behavior.

You say she has sundowning but seem to have left out what her behaviors are when she is sundowning.

Only you know your wife and how she acts in unfamiliar places and environments. Maybe do a test and take her to a hotel for a weekend or night and see how she does or in a crowd of people or just change her routine and see how she handles it. This will give you clear indications regarding if she can make this trip or not.

And did you know they have cruises specifically for people with dementia and their families? Might be something to look into for another cruise?
Helpful Answer (13)
Reply to anonymous1768885
AlvaDeer Jun 1, 2024
Wow, I had NO idea such a thing existed, SP
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