communication on board

Hi Everyone; My planning on going on a cruise with my friend Robin. (power chair, ventilator, and much more). I'm wondering for those of you who travel with people with severe challenges such as this, mainly the ventilator could offer some suggestions and experiences. We have some issues with Robin and good decisions. One issue is her going out on her own. I'm trying to figure out if we let her go around on her own a bit on the ship what form of communication we could use if she gets in trouble and needs to contact one of the 3 of us who will accompany her on the trip. Is it safe in your opinion for someone on a ventilator and no voice if the tubing becomes undone to go around the ship on their own? I learned today that she is not allowed to have anything by mouth. She has a feeding tube but has been going away from the nursing home and eating regular food. I'm trying to encourage her to make good decisions and have said that if she can prove she's not going to sneak away and eat, we could try to set things up so she could be on her own while we eat. One of the people coming with us is close to Robin's age so she will spend most of her time with Robin. I know there's no free wifi on board so our usual method of texting to keep in touch won't work. Will walkie talkies work? Would there be a safe as possible area on the ship that she could go to on her own? I had hoped that her last swallow study had come up with her being allowed to at least have tastes-she told me she was allowed to eat-so am disappointed and sorry it's totally banned. Any suggestions and experiences with this sort of issue.

Hi Everyone; My planning on going on a cruise with my friend Robin. (power chair, ventilator, and much more). I'm wondering for those of you who travel with people with severe challenges such as this, mainly the ventilator could offer some suggestions and experiences. We have some issues with Robin and good decisions. One issue is her going out on her own. I'm trying to figure out if we let her go around on her own a bit on the ship what form of communication we could use if she gets in trouble and needs to contact one of the 3 of us who will accompany her on the trip. Is it safe in your opinion for someone on a ventilator and no voice if the tubing becomes undone to go around the ship on their own? I learned today that she is not allowed to have anything by mouth. She has a feeding tube but has been going away from the nursing home and eating regular food. I'm trying to encourage her to make good decisions and have said that if she can prove she's not going to sneak away and eat, we could try to set things up so she could be on her own while we eat. One of the people coming with us is close to Robin's age so she will spend most of her time with Robin. I know there's no free wifi on board so our usual method of texting to keep in touch won't work. Will walkie talkies work? Would there be a safe as possible area on the ship that she could go to on her own? I had hoped that her last swallow study had come up with her being allowed to at least have tastes-she told me she was allowed to eat-so am disappointed and sorry it's totally banned. Any suggestions and experiences with this sort of issue.

If there is even the slightest chance that she would "sneak away", I'd have someone with her every minute.

I also cannot imagine leaving someone like that alone, even in the cabin.

What if there are ventilator problems?

It's a wonderful thing you are planning for her, but make sure it is done with all of the best precautions for anything you can envision that might cause serious problems.

(We've had some experience with a loved one in a somewhat similar situation, and we brought her home, with rented hospital equipment, and paid assistants to help. It's not easy at all, day in/day out. But "safety first"!)

Hi Everyone; My planning on going on a cruise with my friend Robin. (power chair, ventilator, and much more). I'm wondering for those of you who travel with people with severe challenges such as this, mainly the ventilator could offer some suggestions and experiences. We have some issues with Robin and good decisions. One issue is her going out on her own. I'm trying to figure out if we let her go around on her own a bit on the ship what form of communication we could use if she gets in trouble and needs to contact one of the 3 of us who will accompany her on the trip. Is it safe in your opinion for someone on a ventilator and no voice if the tubing becomes undone to go around the ship on their own? I learned today that she is not allowed to have anything by mouth. She has a feeding tube but has been going away from the nursing home and eating regular food. I'm trying to encourage her to make good decisions and have said that if she can prove she's not going to sneak away and eat, we could try to set things up so she could be on her own while we eat. One of the people coming with us is close to Robin's age so she will spend most of her time with Robin. I know there's no free wifi on board so our usual method of texting to keep in touch won't work. Will walkie talkies work? Would there be a safe as possible area on the ship that she could go to on her own? I had hoped that her last swallow study had come up with her being allowed to at least have tastes-she told me she was allowed to eat-so am disappointed and sorry it's totally banned. Any suggestions and experiences with this sort of issue.

All cruise lines have a "FIT to Travel Clause" in its cruise contract. Though the wording varies per cruise lines in summary they're all the same. To sum it up if an individual is not fit to travel by themselves than arrangements must be made to have someone traveling with that person to take of the needs of the individual at all times. Based on the sections I highlighted in your original post your friend is not safe to be left alone.

It's also important to know that if your group decides to leave her on her own at anytime during the cruise and something arises that requires the cruise staff to intervene do to her being left alone and or places any passenger in a precarious situation to have to seek help because your friend did not have a personal attendant know that this all gets reported to the Caption. Furthermore Caption has to the right to disembark everyone in your group at the next port ( no refund and all costs to get back home fall to your group.) for having complied to the Cruise Contract as well as know placed your friend at great health risk by leaving her unattended . Yes this has been done more than you'll ever know. By planning to leave your friend unattended you place everyone's cruise in jeopardy.

Thanks for your comments. You've reinforced my feelings about Robin not going anywhere on her own. The other really young person coming on the trip feels it's not reasonable to expect someone Robin's age (27) not go out on her own. I thought maybe I was being over protective. We will take turns in the evening at dinner time so that we each get time to enjoy the more formal atmosphere of the MDR.

I agree that leaving her alone is just asking for trouble. There is an element of risk (as your other posts have shown you are well aware) simply in taking her on a cruise. Your plans to mitigate the risk as much as possible through planning and having equipment and trained people with her make sense to me. But adding another element of risk by leaving a person alone who has such significant health issues and also a tendency to noncompliance sounds to me like a really bad idea. (Of course, there is risk even in normal activities, but Robin is really in a different class.)

In addition, I would rethink whether the other "really young person" should come along or have any responsibility for Robin if she does. Her attitude does not inspire confidence that she understands just how serious Robin's condition is and what concessions Robin will need to make in order to enjoy a safe trip. You know her and none of us do, but I would be concerned that she would ignore that "unreasonable" restriction and look the other way so Robin could sneak off. (Especially if Robin has already lied to you when she said she was allowed to eat!)

Has anyone addressed the legal implications of Robin's bad decisions? Unless she has been declared mentally incompetent (which doesn't really sound justified), she has the right to do whatever she wants, and you and her other caregivers could be subject to civil penalties or even arrest for preventing her. I'm a nurse, not a lawyer, so you might want to discuss this with an attorney and/or the accessible desk at the cruise line. Again, you know Robin and none of us do, but from what you have posted, I'm wondering if she will agree to anything in order to get on the cruise ship and then insist on doing things that can endanger her life.

Hi Everyone; My planning on going on a cruise with my friend Robin. (power chair, ventilator, and much more). I'm wondering for those of you who travel with people with severe challenges such as this, mainly the ventilator could offer some suggestions and experiences. We have some issues with Robin and good decisions. One issue is her going out on her own. I'm trying to figure out if we let her go around on her own a bit on the ship what form of communication we could use if she gets in trouble and needs to contact one of the 3 of us who will accompany her on the trip. Is it safe in your opinion for someone on a ventilator and no voice if the tubing becomes undone to go around the ship on their own? I learned today that she is not allowed to have anything by mouth. She has a feeding tube but has been going away from the nursing home and eating regular food. I'm trying to encourage her to make good decisions and have said that if she can prove she's not going to sneak away and eat, we could try to set things up so she could be on her own while we eat. One of the people coming with us is close to Robin's age so she will spend most of her time with Robin. I know there's no free wifi on board so our usual method of texting to keep in touch won't work. Will walkie talkies work? Would there be a safe as possible area on the ship that she could go to on her own? I had hoped that her last swallow study had come up with her being allowed to at least have tastes-she told me she was allowed to eat-so am disappointed and sorry it's totally banned. Any suggestions and experiences with this sort of issue.

If she does try to eat, is she at risk for aspiration pneumonia? That cruise ship food might look really good for someone who is not allowed to eat.

Thanks for your comments. You've reinforced my feelings about Robin not going anywhere on her own. The other really young person coming on the trip feels it's not reasonable to expect someone Robin's age (27) not go out on her own. I thought maybe I was being over protective. We will take turns in the evening at dinner time so that we each get time to enjoy the more formal atmosphere of the MDR.

I would be *extremely* worried if *any* of those who are expected to help care for (or help watch over) Robin had an attitude about any aspect of this such as "someone age 27 should be able to go out on her own".

Any such pronouncement would need to take into consideration the specific circumstances. It might be fine for an able-bodied 27 year old who *can* be expected to fully care for herself, but very unfortunately, that is not the case here.

The age isn't relevant in this case. The "abilities given the situation" are what matters.

This attitude chills me.

I would seriously worry that someone with this attitude would be inclined to "let it go" and "let her be by herself" (wandering around or even just in her own cabin). It's all the worse that being on a ship is not a normal situation. Lots of movement. Possible crowding by strangers. Possibly getting lost. (Hate to say this, but possibly being taken advantage of by some so-called prankster, especially those who are younger and not really capable of understanding "consequences"...)

Now, we don't have any sense of how capable Robin is to care for herself when left alone at home for any extended time period. But even if that is 'okay', that isn't the same in such a different environment.

But it sounds like she hasn't been fully responsible in the past, even at home ("sneaking away", etc.)

I admit to having worried a bit when you were describing your thinking earlier.

And now that you've described some of the concerns more specifically - as highlighted by xxoocruiser - I worry even more about the wisdom of doing this.

Or at least, the wisdom without having a fully time professional staffer with proper experience. (Even then, such a person would need some time off, if only to sleep/etc.,)

You've mentioned:

-- she's on a ventilator;

-- the tubing can come "undone";

-- she already has a history of sneaking out to eat "regular food" that is prohibited...

Yikes.

The risks are just too, too great.

I can only partially imagine if the cruiseline (and Captain of the ship! Or physician on board!) read this and knew this situation was about to occur on his/her ship...!

:eek:

She is an adult, and has the ability to make bad decisions, such as eating orally when this has been determined to be unsafe. On the other hand, you have taken on a lot of financial and other efforts to give her this trip for which you think she has been hoping. You are going as a caregiver and friend, not as a policewoman. I would recommend that you have a frank discussion with her about this dangerous behavior she is exhibiting in sneaking oral food, and that you will not agree to take her on this trip if she plans to do so on the cruise. The risk for proper management of an aspiration pneumonia at sea are much higher than when she does this ashore at the nursing home where she lives. If she will not agree to refrain from taking oral food on the trip, you may need to tell her that the trip is cancelled.

Regardless, I would definitely not recommend that a person who is ventilator dependent, verbal or non-verbal, going around the ship by themselves. Ventilators get disconnected. Power chairs break down, suctioning may be needed. Alarms for the ventilator may not be heard nor would just anyone nearby know what to do if they were heard.

Walkie-talkies are not only non-functional in many areas of the ship (all those metal bulkheads, etc.) but extremely rude to other passengers who are nearby when using these for "communication". Finding one she could operate would be an additional challenge, esp. in the circumstance of ventilator failure or disconnect. Please don't consider these a back-up for not having someone with her at all times, in the cabin and in public areas, who can help if any of this should occur. Regardless of being 27 yo, she no doubt has not been allowed to go anywhere alone on a pass from her nursing home, and should understand this (I suspect she ate when on pass in the company of the "friend" who wants to enable her unsafe behavior).