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.
But just in case you are not, I will say firstly that you know your wife and your family better than we do.
I myself would be a tad worried to leave someone with dementia in a strange environment alone, especially one in which there is water if wanderings take a turn. Especially if there is history of being by self. And especially if I haven't discussed all this with family.
You might pass your question along to the Cruise line itself! I would love THEIR response to it.
But the ball, as they say, is in your court.
I am hoping that BurntCaregiver, SP, and ZippyZee are around today.
They usually have EXCELLENT input on questions such as this. I think you can rely on them for great advice!
Best of luck to you.
I'm not sure I could be that brave. Especially knowing that your wife will now have to adjust to a new routine away for home.
You might want to rethink taking her along and perhaps hire someone to come stay with her at home while you and your family get away and enjoy your time together, without the stress of having to care for your wife.
Otherwise hire a caregiver to come along on the cruise with you that can keep your wife entertained while you go have fun with your family.
There are no easy answers here, but I certainly would NOT leave your wife alone in the cabin while you go off and have fun. That is just asking for trouble.
If it were me, I would leave my wife at home under the care of someone and go and have a fun time with your family, as if it's Alzheimer's that your wife has and not one of the other dementias, that can go on for 20+ years so you deserve to get away by yourself every now and again, as you're in for a long haul with her.
I wish you well as you take this very long and difficult journey with your wife.
You know? The new environment and all? It would worry me while I played shuffleboard.
But then I likely have read way too many Ruth Ware type books where there is a cruise, and someone just disappears.
I have to say I am a landlubber overall, however. I am hoping, when I do have dementia, N. doesn't take me on a cruise! He's an old sailor and it sounds like something he would do.
I guess I am overall prejudiced on this one.
From what you have described - if you do it, two suggestions:
1) Get a room with window. Having light may be helpful to prevent some disorientation. Its a bit disorienting and bothersome even for young people in inside cabins with no light.
2) Dont leave her alone at all, not even for 1 minute! Someone should be with her at all times.
if you must go, get the whole family on board with watching her and take extra tip money for the room steward and crew because they will probably have to help. I think it’s lovely that you are trying to include her and I hope it turns out to be great.
Also, advice in general for those on a cruise, from my favorite traveling nurse Paul, who works the lines.
Never never never say you have nausea, just vomitted OR have diarrhea.
You will be locked away for some time due to their fear of norovirus spread.
Hee hee, I am just full of words-to-the-wise today!
Please let common sense prevail.
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?
I'm sure they had a big room (relatively speaking) and she could see the ocean and the sun & that helped.
It was just the two of them, but he indicated that her care was pretty exhausting. She no longer grooms herself, which is very, very noticeable. He has to do her hair and what little makeup she wears. She's gained a lot of weight (possibly due to the medications?) and so he has to find clothes that fit her--it's really just a lot.
She's now losing her ability to form coherent sentences and sometimes makes barking or groaning sounds, which he realizes is a little upsetting to other people.
All in all--though HE enjoyed the cruise--he was not refreshed and did not enjoy the trials. I think she had a couple days where she was sleeping all day and he didn't leave her.
Since you have family, I hope that they can help you out. I find cruises to be relaxing/annoying--too many people, no control over what you do, etc.
As far as the incontinence--I think BIL kept his wife in the thinnest incontinence briefs he could find, to cut back on worries of accidents.
I hope you can still have a good time. Get verbal commitments from family members that they will help you (and don't EXPECT anyone to just be OK with the babysitting aspect of this) before you go.
Good Luck with this. I hope you all can enjoy the time together.
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.
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.
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.
I am probably pessimistic, but I like to think I'm a realist. I suppose it depends on one's POV.
As far as thinking about it being a vacation for your wife, I wouldn’t view this as a vacation for her either.
If you want to roll the dice, it’s your decision. I won’t rub your nose in anything by saying that we told you so.
Don’t do it, if you are hesitant. If you want to gamble, good luck!
If you decide to go on a trip without your wife, that’s fine too! Either hire a private sitter to stay with her or place her in respite care in a facility.
Wishing you all the best.
sp,
Just looked up cruises for people who have dementia. I saw Elite Cruises and Vacations.
As well as the difficulties to yourself as a caregiver, you need to consider how your wife will feel in a strange environment.
And a ship is very strange, indeed. It moves, with different scenery going past, and it rocks, so that it could make walking unsteady - all very disorienting, especially to someone with Alzheimer's.
The cabin is likely to be small, so that it could be difficult to physically take care of your wife (does she wear incontinence pads?) and it would not be safe, or kind, to leave her alone in the unfamiliar room, nor would it be safe to lock her in.
Also, how will she feel about being in an environment with so many strangers around? What would happen if her sundowning got worse, especially in a strange environment, when you were in a public place? How would you cope?
You have not said how long the cruise will be, but have you thought about the length of time you will be far from your usual doctors or hospital, in case of medical problems?
You say that you hope your family will help. I think that you should talk with them, quite seriously, about how they would be willing to assist you with caregiving.
Good luck with this, and please let us know how it went. Your experience, and how you managed, could be helpful to others on the forum.
Above is a link to an article about cruising with dementia and what to do/not do, and how to prepare for each leg of the journey. There are tons more discussions on this subject online too, fyi.
Make sure you purchase travelers cancellation (for any reason) insurance if you book this trip because the future is very uncertain for elders in general, but especially for elders with dementia where things tend to turn on a dime. I had a 21 day trip to China and Tibet planned for my husband and I in 2014 when my father fell and broke his hip. All hell broke loose and had I not purchased cancellation insurance, we'd have lost a LOT of money by backing out of that trip.
If you would like to go, place her in respite for the time you are gone, she will be safe and cared for.
As for other saying they will help, I would neither depend on them or put them in that position, they are going cruising to enjoy themselves not care for a person with dementia.
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.
What an ordeal that must have been for you.
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.
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.
However, every single responder has taken the post absolutely seriously. I must count myself WRONG again. And if not, certainly has been some wonderful ideas on this thread.
Hope our OP has a great vacation, whatever choices are made.
I wouldn’t want to be stuck there if your wife got all confused being in a strange place and you can’t bring her home quickly .
Sorry but , she’s already sundowning ,
being in a strange cabin could get her scared , agitated , etc . I wouldn’t bring her along on the cruise .
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.
If you haven't done a plane ride in a while, its no fun. The security, if out of the country, customs. The layovers. You can just about get one person into a toilet let alone two. And like said, what are you going to do if wife has melt down. I know Dementia but wouldvnot appreciate being on a plain when wife had a melt down or needed a Depends changed.
Again, place wife in respite care and enjoy ur cruise.
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!
My DH and I cherish our annual family vacation. If I am unlucky enough to get dementia and be in a similar situation, from reading these comments, I am going to tell my husband today to keep in the back of his mind to go have a good time without me.
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.
I was an aide for 25 years. NO ONE is going to be willing to do this for free. Their passage and accommodation being paid for and allowing her breaks goes without saying, but it is not a vacation for an aide and should not be treated like one.
I would not take on the care an incontinent elder with Alzheimer's onboard a flight or a cruise ship for any amount of money.
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!
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.
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.