My aunt has severe frontal temporal dementia, Can she go on a cruise if she wanders and doesn't know where she is?

I Googled this and found an article that said "The most common signs and symptoms of frontotemporal dementia involve extreme changes in behavior and personality.

These include:

Increasingly inappropriate actions
Loss of empathy and other interpersonal skills
Lack of judgment and inhibition
Apathy
Repetitive compulsive behavior
A decline in personal hygiene
Changes in eating habits, predominantly overeating
Lack of awareness of thinking or behavioral changes

And you say that her condition is severe?

From what I've read, I would definitely say no! How would you secure the cabin so that she would not go out the door at some random time at night and go who knows where on the ship and either get lost somewhere or worse.

Has your aunt's doctor explained to her husband the reality of things? Maybe your uncle has some dementia?

I have already posted an answer, but I want to say something else.

Sometimes in life, when family members---particularly elderly parents---begin to experience medical problems like dementia, Alzheimers, etc., you have to sacrifice things to take care of them. That's life. And it is also the way a mature, grown-up person thinks & acts. Forcing a situation upon a person that has dementia that completely displaces them from their comfortable place (home) so you can go on a cruise is a very selfish & immature thing to do. Even leaving that person with a stranger at home to take care of them for a week or more is selfish because they're not familiar with that person & could very well be scared of them. Your aunt cannot help that she has dementia----if given a choice, I'm quite sure that she would have chosen to not get dementia. But, she did. That's life.

If your uncle wants to spend time with his 6 year old grandson, he can have his daughter & grandson come to his house, his daughter can stay hometo take care of your aunt while your uncle can take his grandson to do things and spend time with him. They don't have to go on a cruise to do it.

I read someone else's answer & they mentioned something that I hadn't even thought of: What if your aunt goes wandering & goes overboard into the ocean? Cruise ships have finite borders. My train of thought was that cruise ships are like floating cities & usually have over 3,000 people on board----if your aunt goes wandering, it would be like wandering in a miniature New York City. I never even thought about the going overboard part of it. That is a frightening thing to consider.

Here's another idea: If your uncle wants to spend time with his 6 year old grandson, then the 2 of them can go on the cruise & your cousin can stay home & care for your aunt while they're gone. Maybe that would open her eyes to see just how bad the dementia is.

But, again, ultimately the responsibility is not yours. There is truth in the saying "You can't cure stupid."

pargirl...I agree with you. i think it is cruel...my mother has the 1 hr window also! i just hope for the aunt's sake they are NOT leaving her alone on the cruise? that would really blow my mind!

I must be getting terribly cynical in my old age. It crossed my mind that aunt's wandering, on A Cruise Ship in the middle of The Ocean, could have been one of the selling points for this choice of vacation. I am very glad to be sure I'm wrong about that - this sounds like a loving if somewhat optimistic family.

All the same, at first sight it seems to me an obviously bonkers idea; but having heard from people who have done it successfully… well, they know better than I do. So unless you're willing to volunteer to look after aunt while they're away, perhaps you should keep quiet and let them make the best of their time together in their own way.

Too young for this, you're absolutely right. Unfortunately when a person or family finds themselves in situations like this, you have to sometimes say "the cruise will have to wait".

I worked for cruise line in their corporate office for over 3 years. I can tell you it was not uncommon to have people taken off a ship due to unruly behavior and barred from returning. Sometimes the cruise line picked up the airfare and sent them home, sometimes they just kicked them off.

In this case they could tell them to disembark and pay the airfare.

One poster said tell the cruise line and they will pay extra attention, that's not how it works. These cruises ships are floating cities with several thousand passengers, they don't have the time to babysit the aunt.

It's not like a flight attendant paying extra attention to a minor child flying alone.

They will not take this risk on a ship.

This is a bad idea, and if the aunt attacks someone the family is liable. They could be looking at being sued and also being booted off the ship.

countrymouse....are YOU KIDDING!! the aunt has dementia...and it sounds like she's being left alone!!

I was kidding about the first part, yes; and I apologise - it was in poor taste.

But for the second part, we've heard from people who have been caregivers for loved ones suffering from dementia and have successfully taken them away for similar trips. That is why I say they know better than I do: they've done it, I haven't.

Reflecting on the OP's situation, she is anxious about the idea of her uncle and her cousin taking his wife/her mother away on a cruise, with small child in tow as well. I can see why she might be anxious, too; and I agree that this isn't something I would have been keen to attempt. But although there is nothing to stop the OP reporting the plan to APS or any other authority and asking them to make enquiries, I can't see them stepping in to interfere with the family's travel. On what grounds? The uncle is responsible for the aunt's care, as he is in everyday life; his adult daughter will also be present to provide back up. If those two people believe the cruise is manageable, I'd be very surprised if anyone were prepared to overrule them simply because another family member has a different opinion.

lalafair22, I hope you will do a followup post on what the final decision was, and how it worked out. We learn from each other.

On what grounds Countrymouse? A simple call to the cruise line could stop the trip, they don't want this responsibility or worry about the liability a situation like this brings. If they allow boarding they would want clearance from a doctor, and what doctor is going to give his/her go ahead on something like this.

The cruise line has the right to deny boarding.

They can also boot the family off at the next port if there are issues/disturbances caused.

I expect the man who looks after his wife, and the daughter who helps him, have considered these points as part of their travel arrangements. When all is said and done, they wish to take a family holiday and another family member objects. Who's to say that her assessment of what is good for the mother is more accurate than theirs?

I'm just picturing the cousins of many of us caregivers on this site telling us that they know better than we do what is good for our loved ones. That could get lively...

Thank you for all your thoughts. I would love to simply be able to contact Disney cruises or her doctor and let them know of the situation. Unfortunately, this truly places me between a rock and a hard spot. My cousin, with whom I am very close tends to overreact and I really am trying not to cause a riff between us, as I love her and know that the next few years will only get tougher. The same is true with my uncle, who has been lying/downplaying my aunts outbursts to the Dr. So the Dr. only sees a snippet of her symptoms, seldom the physical violence. I know that the physical violence is a reaction to frustration and not wanting to harm for fun, but still I worry. I wish I had an anonymous way to report it, but this trip is only known to about 20 people. I also work in a field with a duty to report suspected abuse/neglect; does this qualify?

Yikes!!!

lalafair22,

There are times in which our hands are tied beyond expressing our opinion that things might not go well. Then comes the painful part in watching what transpires. It may or may not work. I don't have much faith that it will. I hope I'm wrong.

Lalafair, why don't you tell your cousin that if she does not disclose your aunt's diagnosed condition a) to the tour operator and b) to the aunt's travel insurer, then you will. You may find that she, or her father, has in fact done so and nobody has a problem.

This is not a case for anonymous reporting. Reporting what? Do you have access to your aunt's medical records? Do you see her every day, and care for her full-time? Think it through. You ring the cruise manager. And you tell that person… that you know of a party which includes a lady who may not be able to enjoy the tour, and who may pose a danger to herself or other people. How are you going to back up this statement? With what evidence?

Clearly you are losing a lot of sleep over this issue. So constructive suggestions:
1. Call APS and see what they think.
2. If you know your aunt's doctor's contact details, call his office and report that this proposed trip has come to your attention and you wonder if he has been asked to sign off on the travel insurance. Obviously the doctor can't discuss your aunt with you, but if he is seriously concerned there's nothing to stop him raising the issue with his patient - "oh Mrs X, I hear you're going on a little trip…" kind of thing.
And if he's not remotely concerned, then perhaps neither should you be.

When you say your cousin tends to overreact, I'm not sure what you mean. You say you're very close to her and don't want to cause a rift, but how does that sit with wanting to cancel her travel plans and overrule her own assessment of what's good for her mother?

In a close relationship, one person can say candidly to another what is on her mind and expect to be listened to with respect. If you can't do that, you don't have a close relationship.

CM raises some good issues...expanding and turning her points around, a call could also be made to the tour company not to express a concern about someone with medical issues and ask what precautions and support exist for such a patient. That could raise a red flag just because the question is somewhat vague. And the conversation could take a turn that might be more inquiring on the part of the tour company.

On the other hand, I do also see the point that you're concerned, but apparently the decision is unfortunately not yours to be made. Sometimes all you can do is express that concern to the people responsible.

My first sense must have been the subject of a computer gremlin with hands on the "delete" button. It should be been....make a call to generally express a concern about someone traveling with certain medical issues and limitations, then ask what could be offered as support if anything happened....such as what if the patient became frightened and locked herself in her room....or worse yet, wandered off.

Since your cousin and uncle are the primary caregivers, respect their opinion.
Even if it is a mistake. I think it would be very good advice to get travel health insurance. If you want to be really helpful, offer to pay for it.
If it does not work out well, resist all urge to say I told you so.

At the end of the day, they are the ones with the responsibility. This is similar to disagreeing with someone's parenting style, opinions are not highly welcome.

You mention physical violence. Who is being violent, your aunt? Does the family realize that yhere are medications that might ameliorate this situation if they were honest with the doctor?

These sound like two stressed out caregivers who are too tired to think things out clearly. If i had to guess, id say that uncle is afraid that "they" will take wife away if they are honest about her behavior.

Why would you take her on a trip?
is she paying for it?
who is??Why would you take her on a trip??

Medina, to recap:

The lady's husband and daughter are taking her on a Disney cruise, along with her small granddaughter. It's a family trip, for which the husband will be paying for the whole party.

The OP feels that the husband and daughter are taking her on this trip partly because they are in denial regarding her state of mind and ability to enjoy this cruise, and partly because the husband wishes to indulge his daughter and granddaughter who would not otherwise be able to afford it. The OP is concerned that the unfamiliar environment might be distressing for the lady, who is her aunt, and that the distress might in turn lead to an increased risk of harm either to the lady herself or to others.

Since the OP has put these concerns to the husband and daughter (both, yes?) and they have rejected them, one can only assume that the husband and daughter disagree with her assessment of the aunt's condition and care needs. The only remaining question is whether the tour operator and/or travel insurers are aware of the lady's condition and, if so, are still prepared to accept her on the trip.

OP, have you shared with your uncle and cousin what happens if they're put off the ship due to your aunt's behavior? You didn't say where they're cruising to, but what if he has to pay for 4 airfares back home.

Or if your aunt attacks and injures someone either crew or another passenger that he will be sued?

Maybe approaching this from a monetary standpoint would get the message across. They sound selfish, but if the idea is put in his head that if she acts up and they're told(as a someone who worked for a cruise line I know) you will disembark at the next port and not allowed back on the ship or she injures someone he is liable. That could mean $$$$$$$$ either way.

I would stress how it could impact him, he must be at least financially comfortable, and they usually hate parting with money.

her husband pays them to take her on the cruise with them???

No cruise. She wouldn't get anything out of it. I'll go in her place and you can place her temporarily in a NH.

Okay. just common sense not to bring someone impaired.
Titanic. and the cost isn't something i guess she is paying for?
???????????

Offer to watch your Aunt at the price it would have cost to take her on the cruise. These people are being very selfish!!

If they are considering taking her on a cruise I would be questioning all choices they make concerning your Aunts care..

Lalafair, apart from the barricading herself in the hotel room incident, in what sort of ways have you noticed your aunt becoming very anxious when away from her home environment?

I wish to play devil's advocate, so bear with me. The question is, at what point in the dementia journey is it decided that people who are suffering from it should not be allowed out in public? We seem to be cheerfully deciding that your aunt could not possibly derive any benefit or enrichment to her quality of life from joining her husband, daughter and young grand daughter in what, normally, should be a very happy experience (my idea of the seventh circle of H*ll, I have to say, but that's just me); but how sure are you of that?

Is that what you predict? That your aunt will spend the entire time in a misery of confusion and disorientation, embarrassing or frightening her companions and possibly at risk of a serious setback in her own mental health? I'm not being sarcastic, I am genuinely asking if that is what you think will happen. If so, is that how you have put it to your uncle?

Sadly, as we know too well, it becomes by degrees impossible for people with dementia to carry on with many things that they used to enjoy; but its inevitability is not an argument for bringing that time forward. So: could you be jumping the gun? If you don't think so, and you really do have good reason to be convinced that the trip will be disastrous, you are going to have to worry less about your cousin's sensitivities and be more straightforward in advocating for your aunt. I'd approach your uncle, if I were you: he's the boss, after all.

There are only 20!!! And not one of them has said anything??!! Sometimes you have to stand up for what is right and not be afraid to make someone mad or not like you. It will blow over and they will see how much better off she will be A. NOT going on this dumb cruise, B. In a facility where people who know what they are doing can take care of her/or in house care. Yes, you can go behind your uncle's back and get a note to her doctor. I did it all the time with my mom's dr. She was great at faking her way through an appt. so the dr. had no idea how bad it really was and my dad couldn't say anything because he was with her in the room. How could she with only a 10 or 15 min. appt. Her doctor was a geriatric dr. with a social worker that worked with them to help seniors through the mine field of getting older. If I couldn't get a note to the dr. I would call her and she would pass on to dr. I agree with Babalou and think the uncle is afraid they will take her away. Sometimes that guilt keeps people from doing the right thing. If he has the money to take everyone on a cruise then he has money to either bring someone in or put her in a facility. I say go for it and tell the doctor. What do you have to lose?? Your aunt possibly on this cruise. Stress makes alz/dementia 10 times worse. When she gets back it WILL be worse. Medina4.....I loved your double answer.

If CountryMouse is the devil's advocate, I must be the devil. :)

I traveled A LOT with my husband in the 10 years he had dementia. His neurologist encouraged it. We did Amtrak, planes, and cruises. I would do it all over again in the same situation. The final cruise was 4 months before his death, and he was failing. His daughter came with us (thank heavens!) and it was not the happy adventure we hoped for, so perhaps that one trip I wouldn't do again, or I'd do it earlier in his disease (knowing what I know now.)

That does NOT mean that the Aunt in this thread will benefit from or enjoy a cruise at this time. The people who know her well have different opinions about that. I don't know her at all.

But my point is that we should stop bashing Uncle and Cousin and assuming selfish motives for them. They might be wrong, but that does not make them evil. If they are seriously wrong, they'll all have to face the consequences, such as the expense of leaving the trip early.

And BTW I did discuss my husband's health situation with the cruise line. They were clear about what my responsibilities were and what they could and could not provide. We all went into this with our eyes open.

Continue to make suggestions about what lalafair22 can do with her concerns. But please, lay off the assumptions that the Uncle is very selfish. I assure you that none of the trips I took with Coy were motivations by selfishness. Selfishness in our case would have been leaving him behind and having a real vacation myself.

sounds very selfish to me... when someone puts someone's health at risk for the sake of a free vacation??? NOT very nice!