Question about cruising with my parents one of whom has alzheimers

[hoophome]

My brother and I are looking at taking my parents on a cruise later this summer. They have never been on a cruise. Here's the dilemma on which my brother and I are split.

My Dad (70) has early stage Alzheimer's, and even though he was the gentlest man you could ever have met, one of the effects of the disease is that if he gets into a situation that he is unhappy with he gets very angry and negative. When he gets this way he starts using words like stab, bomb, kill. Words that strangers aren’t going to understand are unintended and pose no real threat.

Often we can diffuse this by changing his environment, going from one room to another, inside to outside etc…so for example if he’s unhappy by the pool we can take him back to the cabin and try to diffuse it. But if his disorientation arises generically from being on the boat, there will be nowhere else to go to diffuse his confusion/anger.

My questions are;

How will the crew react if they hear something like this? I’m afraid in this era of “vigilance” and “heightened awareness” that if the crew hears a man saying these things, no matter what the rest of the family may try to tell the crew, they are going to take it with the “utmost seriousness” and do what? What can they do? Confine him (or all of us) to our room till the next port and force us off the boat?

I’m also concerned about ruining a passenger’s enjoyment of their cruise, how do you think the average passenger will react if they hear an old man saying these things even though there is someone else with him calming him down telling him it’s OK, escorting him away from wherever they are?

[sapper1]

My brother and I are looking at taking my parents on a cruise later this summer. They have never been on a cruise. Here's the dilemma on which my brother and I are split.

 

My Dad (70) has early stage Alzheimer's, and even though he was the gentlest man you could ever have met, one of the effects of the disease is that if he gets into a situation that he is unhappy with he gets very angry and negative. When he gets this way he starts using words like stab, bomb, kill. Words that strangers aren’t going to understand are unintended and pose no real threat.

 

Often we can diffuse this by changing his environment, going from one room to another, inside to outside etc…so for example if he’s unhappy by the pool we can take him back to the cabin and try to diffuse it. But if his disorientation arises generically from being on the boat, there will be nowhere else to go to diffuse his confusion/anger.

 

My questions are;

 

How will the crew react if they hear something like this? I’m afraid in this era of “vigilance” and “heightened awareness” that if the crew hears a man saying these things, no matter what the rest of the family may try to tell the crew, they are going to take it with the “utmost seriousness” and do what? What can they do? Confine him (or all of us) to our room till the next port and force us off the boat?

 

I’m also concerned about ruining a passenger’s enjoyment of their cruise, how do you think the average passenger will react if they hear an old man saying these things even though there is someone else with him calming him down telling him it’s OK, escorting him away from wherever they are?

Please accept my sympathy for your father's condition. Alzheimer's is one of the cruelest diseases I can imagine and watching a loved one deteriorate in front of your eyes must be devastating.

I am afraid that if you took your father on a cruise, the other passengers, not knowing that he is harmless, and easily dealt with, might react with fear ---the crew as well. This might result in your being asked to leave the ship at the next port. If it happened during embarkation procedures you may well be denied boarding.

As much as you want this trip together you perhaps should consider temporary care for your father while the rest of the family cruises. Caregivers need time and space to recharge their batteries and this might well be an opportunity for that. I am sorry I can't be more encouraging, but I truly feel you would not be able to pull off the cruise with your father aboard.

God bless you in all of your challenges ahead.

[Krazy Kruizers]

Please accept my sympathy for your father's condition. Alzheimer's is one of the cruelest diseases I can imagine and watching a loved one deteriorate in front of your eyes must be devastating.

I am afraid that if you took your father on a cruise, the other passengers, not knowing that he is harmless, and easily dealt with, might react with fear ---the crew as well. This might result in your being asked to leave the ship at the next port. If it happened during embarkation procedures you may well be denied boarding.

As much as you want this trip together you perhaps should consider temporary care for your father while the rest of the family cruises. Caregivers need time and space to recharge their batteries and this might well be an opportunity for that. I am sorry I can't be more encouraging, but I truly feel you would not be able to pull off the cruise with your father aboard.

God bless you in all of your challenges ahead.

 

I agree with you!!

Have friends with parents in this situation and it is not an easy situation taking care of them and dealing with the everyday problems.

Really don't think OP should consider a cruise with their father.

[Krazy Kruizers]

I would also be concderned that OP's father might wake up in the night, be confused and accidently fall overboard.

[innlady1]

I agree as well.

 

My MIL had Alzheimer's and my DH's older sister has been diagnosed with Alzheimers in the early stages. From what I have seen with the disease, even in the early stages, the person may be OK at home in familiar surroundings but be disoriented in an unfamiliar setting.

He has never been on a ship before...not a good idea to start now.

I would also suggest finding a caregiver to watch Dad, and give Mom a getaway cruise...it would probably do her a world of good to have a week or so to herself and enjoy her sons!

[FLACRUISER99]

My brother and I are looking at taking my parents on a cruise later this summer. They have never been on a cruise. Here's the dilemma on which my brother and I are split.

 

My Dad (70) has early stage Alzheimer's, and even though he was the gentlest man you could ever have met, one of the effects of the disease is that if he gets into a situation that he is unhappy with he gets very angry and negative. When he gets this way he starts using words like stab, bomb, kill. Words that strangers aren’t going to understand are unintended and pose no real threat.

 

Often we can diffuse this by changing his environment, going from one room to another, inside to outside etc…so for example if he’s unhappy by the pool we can take him back to the cabin and try to diffuse it. But if his disorientation arises generically from being on the boat, there will be nowhere else to go to diffuse his confusion/anger.

 

My questions are;

 

How will the crew react if they hear something like this? I’m afraid in this era of “vigilance” and “heightened awareness” that if the crew hears a man saying these things, no matter what the rest of the family may try to tell the crew, they are going to take it with the “utmost seriousness” and do what? What can they do? Confine him (or all of us) to our room till the next port and force us off the boat?

 

I’m also concerned about ruining a passenger’s enjoyment of their cruise, how do you think the average passenger will react if they hear an old man saying these things even though there is someone else with him calming him down telling him it’s OK, escorting him away from wherever they are?

I hate to sound crass but do us all and yourself a favor and stay home. You have many good cruising years ahead of you.

[jtl513]

The plane to and from the ship may present a larger problem than on the ship.

[madelinerose]

Your decision should have nothing to do with how crew or total strangers will react to your father's Alzheimer's.

 

It will be extremely detrimental for you to place your father in unfamiliar surroundings. Your father should not cruise under any circumstances, regardless of the stage of his Alzheimer's.

 

If you must cruise, do so, without your father. I understand how you're attempting to show your father a good time. I'm sorry to say, it's not going to happen. :(

[CowPrincess]

I have no doubt you are motivated only by a desire to do something wonderful for your dad, while he is still able to enjoy it. However, as has been pointed out by many posters, taking an Alzheimers patient into an unfamiliar situation is setting the patient up for failure. Even in early stage disease, changes to routine and surroundings can be catastrophic, and your dad may never recover to his pre-cruise abilities.

 

All that said ^^^, is there anyplace that he has especially fond memories of, from when he was young? Someplace that you and bro could easily get him to, a true trip down memory lane for him? Alzheimers patients usually lose their memories from present time backwards, so he'd likely have better recollection of a home you had when you were growing up, a lake that he fished at when young.... that kind of thing.

 

If you, bro and mom do not already belong, please look around for an Alzheimers support group. You'll get lots of support and great help with "coping".

[JunPOA]

Since you asked - I agree with the sentiments voiced by madelinerose & inlady1.

Allow me to repeat what other posters have shared and that is you have my deepest personal sympathies & empathy.

I too was a caregiver to my dearly departed MIL - although she did not have the Alzheimer's diagnosis - she did have a deteriorating vascular dementia associated with multiple cerebral mini-strokes. She exibited similar symptoms of A. patients like disorientation, wandering,mood swings, anger, and paranoia.

As a nurse, having formerlly worked as an Asst. Director of Nursing in a nursing home Alzheimer's Unit - I cannot emphasize enough how potentially damaging a change of sturcture and environment can be on these types of patients - in this case your Dear Dad. IMHO - I would suggest respite care either in his own home or arrangements with either an adult day care facility or short-term respite day in a REPUTABLE nursing facility.

Please take care of yourself and give yourself the respite and nurturing you need to stay a healthy caregiver.

Best Wishes,

Leah, RN

[sail7seas]

I agree with the others.

 

If flying is required for you to get to the port, I definitley think it a poor idea. No use of the words you cite will be tolerated. Period. You can explain all day, if he uses such words in an airport, he will not be permitted on the plane and might even be arrested.

 

Of course, your intentions are the best but, is this for him? Do you think he wants to leave the familiarity of his home? Why the contemplation of taking him on a cruise if you are concerned enough to come here to ask these questions? If you feel these are possibilities, you probably know what is in your Dad's best interest.

 

I know this sounds harsh and I am sorry to speak so directly but if you didn't want an answer, you would not have asked the question.

 

I feel deeply for all families touched by this monstrous disease and so hope a cure is close.

 

My best wishes to you and yours.

 

[Krazy Kruizers]

The plane to and from the ship may present a larger problem than on the ship.

 

You are right there!

[magictam]

Hoophome

It's really wonderful to see that you and your bother are trying to do something special for your parents.

Unfortunityly I have to agree with others that this might not be the best idea for your father. My mother in law also had Alzheimer's. We were advised by her drs and caregivers that one of the best things with could do for her was to keep the environment the same and stay with a rigid routine. This would help miminize her confusion and discomfort levels. It really did seem to work, plus she seemed to be happier. I would be worried that a cruise would really disorienate your father which could really aggervate him.

I wish you the best in your decision.

[pms4104]

I agree with the posters who advise against taking an Alzheimers patient on a cruise and out of familiar surroundings and rigid structure and routines.

 

Further, I would be concerned that the cruise experience actualy might cause your father's condition to deteriorate rapidly even once baack on his home turf.

[CC Help Michell]

I agree with the posters who advise against taking an Alzheimers patient on a cruise and out of familiar surroundings and rigid structure and routines.

 

Further, I would be concerned that the cruise experience actualy might cause your father's condition to deteriorate rapidly even once baack on his home turf.

 

I agree with that, and also wanted to furnish you with links to two threads from another board here at CC ("Ask a Cruise Question") where this subject was discussed with kindness and compassion just a couple of months ago:

 

http://boards.cruisecritic.com/showthread.php?t=767809&highlight=alzheimer%27s

 

http://boards.cruisecritic.com/showthread.php?t=783245&highlight=alzheimer%27s

[hoophome]

Thank you everyone for your prompt replies, and confirming my gut reaction of what is the "right thing" to do

[arabrab]

To the OP: It is so hard to see someone you love constrained in a ever-smaller space as dementia and disorientation take over. My mom loved to travel, and was a nomad at heart, but when she lost mental capacity after her stroke, she also lost virtually all the emotional and intellectual resiliency she'd needed to cope with the vagaries of travel. I was confined by her limitations, and I was frustrated with how difficult it was to create options for the experiences I wanted her to have.

 

But in the end, I came to understand that she took great comfort from the familiar, and very much enjoyed the adult day care program, and hated even going to a restaurant where others could see that she was a very messy eater. Her impulse control was also poor, and her temper could be terrible -- all so different than the woman she'd been.

 

If there's any way you can arrange respite care for your dad, and get your mom to go on a cruise with you, I think that would be best. But...my dad wouldn't leave mom even for a long weekend, even with my sister as an incredibly capable and loving caregiver. I think that it would have done my dad a world of good to get a break, but in the end he just wouldn't do it, so don't beat yourself up if you mom doesn't want to leave your dad even for the length of the cruise.

 

You have my deepest respect for what you're trying to do, and the difficulty of the circumstances. If you haven't considered an adult day care program for your dad, I'd encourage you to investigate the options, because it was a wonderful experience for my mom, and gave my dad some much needed relief from the stress of 24 x 7 caregiving.

 

Best of luck.

[kryos]

I agree as well.

 

My MIL had Alzheimer's and my DH's older sister has been diagnosed with Alzheimers in the early stages. From what I have seen with the disease, even in the early stages, the person may be OK at home in familiar surroundings but be disoriented in an unfamiliar setting.

He has never been on a ship before...not a good idea to start now.

I would also suggest finding a caregiver to watch Dad, and give Mom a getaway cruise...it would probably do her a world of good to have a week or so to herself and enjoy her sons!

 

I would have to agree with this advice 100% ... taking dad on a ship is not a good idea at all. I would tell the OP that first off, you're not doing him any favors bringing him on a cruise, no matter how nice nor how well you treat him and mom once onboard. He's not going to enjoy that trip one iota. Mom may be happy, but he's going to be absolutely miserable, and contentious, because he will be in unfamiliar surroundings, may also be seasick, and may miss the things he has at home ... that make him comfortable. As a result, he's gonna make everyone else around him miserable ... including eventually mom ... and everyone's gonna regret the decision to take the cruise at all. Also, in order to feel "secure," he's gonna need your mom glued to his right hip the entire trip, or he will go bonkers. That's gonna make the trip rough for mom too.

 

You're not doing the other passengers onboard or the crew any favors either. If your dad starts using words like "stab, bomb," etc., they are gonna become understandably concerned. Don't be surprised if dad and your entire family wind up getting put off the ship at the next port, simply because he will be considered a security risk no matter how much you reassure everyone that he means no harm. Getting put off the ship is gonna mean some major expense to get everyone home.

 

I wouldn't even do the caretaker thing right now. That's gonna scare the crap out of him and also offend him. He's gonna wonder why you're taking mom on a cruise and not him, and he probably won't be able to understand your explanation, no matter how gently it is delivered.

 

Personally, if this were me, I wouldn't even take mom on the trip right now. You don't know how many more years they have together before your dad's disease gets to the point that he may have to be removed to an institution for his own safety. Your mom and you just won't be able to provide a safe level of care for him at home. Take mom on her cruise then ... when your dad won't miss her and her absence for a week or so won't have such an impact on him.

 

God bless the OP for caring so much about his parents as to want to do something this nice for them. There's a special place waiting in heaven for people like that.

 

Blue skies ...

 

--rita

[kryos]

Your decision should have nothing to do with how crew or total strangers will react to your father's Alzheimer's.

I'm afraid in this case it has to have a lot to do with it.

 

If he uses certain words on the ship, it's gonna upset others and no amount of explaining will make that upset go away.

 

So, yes, when you bring a patient with these problems into a venue where people spent a lot of money to have a good time, you do have some obligation to them not to do anything that would be in violation of their rights. Bringing someone into the dining room who may start yelling ... maybe making threats ... using unacceptable words, etc., is not fair to the crew or to other passengers. Even though the patient means no harm, and you explain that he is harmless, it is still upsetting and something those other folks shouldn't have to deal with while on vacation.

 

Now, if you were talking something like a patient who drooled or had MS or palsy or a disease like that which could make others "uncomfortable," I would say "tough crap" to them. The OP's father has just as much right to be on that ship as anyone else, and if those people are uncomfortable because he needs to be fed or may drool at the table, then they can just make arrangements to be seated somewhere else. That's not the OP's problem. But in this case, with the specific problems the OP has with this patient, I think bringing him into a cruise ship environment would honestly be unfair to other passengers and the crew. I also think it probably wouldn't take more than a day or so for him to be evicted from the ship, along with the whole family. :( Generally, words like "bomb, stab, kill," etc., don't go over too well in modern society ... no matter how "harmless" the person may be who is uttering them. :(

 

Blue skies ...

 

--rita

[nchank]

My dear wife has been DX'd with Alzheimer's now for about 18 months. We did take a cruise last March that went very well, but I did have to stick with her full time. Her near term memory has gotten worse but aside from that there has been no problems. I will decide about our next planned cruise next March after I see how she does with a trip this month to see relatives that will involve hotels, airplane and staying in an unfamiliar place.

 

At this point I could not leave her with someone while I get respite care since she is looking forward to a cruise. She knows what is going on.......

[gg3]

hoophome - My brother and I are looking at taking my parents on a cruise later this summer. They have never been on a cruise. Here's the dilemma on which my brother and I are split.

 

My Dad (70) has early stage Alzheimer's, and even though he was the gentlest man you could ever have met, one of the effects of the disease is that if he gets into a situation that he is unhappy with he gets very angry and negative.

 

I am so impressed that you two young brothers would care so deeply about your parents and want to bring them such joy on a cruise. What a wonderful and kind thing for you to want to do, but, I agree with the basic tone of most of my fellow posters. Any change....even small changes....are difficult for an Alzheimer's patient. Just think of the changes your Dad would have to endure on such a vacation: leaving home, an airport, a plane and all the sights and sounds and movements of it, different food, the ship, the cabin, new bathroom, new everything except for you two boys, your Mom, and your Dad's clothes. Just overwhelmingly difficult odds and he will not be able to cope. I think one of the first things Alz. families learn is "Do not introduce new settings or new anything to the patient as it almost always sets them back.....and often they can not come back to the stage they were at prior to the changes." If your Mom has been the primary care giver for quite some time......she would probably love the opportunity to take a break. Could you take her and leave Dad in good hands with familiar people and would Mom be comfortable with that ? This is such a devastating time for all of you, but especially true for Mom and she will need help and some breaks. Or perhaps, one boy could take Mom on a trip and one could take care of dad......then switch for the next trip. This can be a very long journey and I applaud you being there for your folks. I agree with the poster who mentioned taking Dad back to a time in his life when he was very happy. It can be as simple as getting out his old rod and reel and asking him to help you cast better. Or how to swing a golf club correctly. Or it can be asking him to help you build a simple shelf if he was handy with tools. Often, even when an Alz. patient can not speak any longer, they can still find joy in the things they were once skilled at, or hobbies they once enjoyed. Remember, as his condition worsens, you go along with what is his reality......so putting him in so many strange places.......there is no reality to him about this......no familiarity. Skip the cruise for Dad, guys. Bless you both. gg

[madelinerose]

Rita, what I meant was the reactions from others shouldn't necessarily be the first priority, albeit a very kind and considerate one. You're absolutely correct that others on the cruise would be uncomfortable, anyone would be, myself included. The actions and language of an Alzheimer's patient can be extremely disturbing. I am very knowledgeable of Alzheimer's disease.

 

This thread has proven to be very timely. Just yesterday I met with Dr. Peter Rabins from Johns Hopkins Hospital.

 

http://www.videopress.org/Peter_Rabins.html

 

I am extremely pleased that the op will be doing the "right thing". :)

 

 

I'm afraid in this case it has to have a lot to do with it.Blue skies ...--rita

[gg3]

Rita, what I meant was the reactions from others shouldn't necessarily be the first priority, albeit a very kind and considerate one. You're absolutely correct that others on the cruise would be uncomfortable, anyone would be, myself included. The actions and language of an Alzheimer's patient can be extremely disturbing. I am very knowledgeable of Alzheimer's disease.

 

This thread has proven to be very timely. Just yesterday I met with Dr. Peter Rabins from Johns Hopkins Hospital.

 

http://www.videopress.org/Peter_Rabins.html

 

I am extremely pleased that the op will be doing the "right thing". :)

 

I agree with you, MadelineRose that this thread is very timely for many of us. I am very familiar with Dr. Rabins and his "36 Hour" book. May I just mention one more book, that has helped so much in this Alz. journey for my family. It is "Creating Moments of Joy" by Jolene Brackey.....who coincidently was on "Good Morning America" this morning. It has brought more peace and joy into my family, than any book we had read. My best to you.....gg

[madelinerose]

Just wanted to add and too late to edit, in case I wasn't clear in my last post.

 

The crew and passengers should not be subjected to the impromptu actions of any Alzheimer's patient. I do agree with Rita. ;)

[madelinerose]

Thanks, gg. Dr. Rabins was just remarkable and extremely down to earth. It was a pleasure meeting him. ;)

 

I agree with you, MadelineRose that this thread is very timely for many of us. I am very familiar with Dr. Rabins and his "36 Hour" book. May I just mention one more book, that has helped so much in this Alz. journey for my family. It is "Creating Moments of Joy" by Jolene Brackey.....who coincidently was on "Good Morning America" this morning. It has brought more peace and joy into my family, than any book we had read. My best to you.....gg