Dementia mom cruising, yes or no

[Familygoboston]

It's a heartbreaking situation that so many of us face! Your heart is in the right place of wanting to enjoy time with your mom while you still " have her". I agree with the medical professionals- a talk with the doctors but also her everyday caregivers is critical. The everyday care givers understand the day to day responses your mom has to routine changes. Does she adapt well to changes in diet generally, what happens when she meets strangers etc? Her responses to these things will guide you about whether she can manage. Once you get a green light there, try a few day trips with different transportation options and dining out, and see how that goes.

 

I recently took my parents on a fairly arduous expedition cruise with my dad in v early stages of dementia. You wouldn't ever know meeting him that he was having short term memory issues. It was very stressful for him because several times within the same day he would lose the details of our itinerary and was very anxious about it. He had my mom as his primary caregivers and she found it very stressful trying to help him anticipate the changes over and over again. My dad who manages daily functions fine at home in the familiar settings, needed assistance from mom with dressing and basic grooming because the unknown cabin configuration confused him. I guess what id say, is that whatever the baseline is, you could probably expect it to be worse when in a new situation. So even if you felt at baseline she could cruise, imagine it as worse than that.

 

Another issue is personal dignity. Dad had several times when he got fairly agitated when he was confused and he has enough awareness that he was then embarrassed that he didn't respond well to a stressful situation. That dignity piece of it is something to consider to- can your mom travel and preserve her dignity, or will she be embarrassed to be the person everyone is noticing as she faces her challenges.

 

I wish you the best of luck and understand how painful it is for you to face this!

[DebJ14]

I have I think what maybe a unique perspective, in that, I have cruised with my mom who had dementia. and though I cannot say to you, bring her, I'm so glad I did! I wouldn't have traded that experience for anything!

 

We took her on a cruise for her birthday one year in November. and she passed away the next February.

 

Like you mentioned, my mom loved cruising too. and while we were on the cruise, you could see it in her face, that she loved it. The staff were more than helpful. At dinner, the assistant cut her food into bite sized pieces for her, even though we did not ask her to do it.

 

One (funny?) thing that happened one night, though....

I awoke in the night to see light from the hall coming into our room. I looked up at the door, which was wide open. :eek: I got up to see that mom was not in the room! :eek: So, I looked down the hall and saw her walking. I ran down, got her and brought her back to the room.

 

Not sure if they had any child lock or something for the cabin door (didn't ask about it) but every night after that, we just pushed a heavy table in front of the door and had no further problems with that.

 

I have tons of pictures from that cruise and memories that are now literally priceless and I'm SO thankful we took her on that cruise.

 

Sure, it might have been some extra "work" to do so, but it was worth it.

 

Just my 2 cents............

 

I had almost the exact same experience with my Mom. She was in middle stage Alzheimers was a brittle diabetic, had congestive heart failure and was in a wheelchair from having a toe amputated and it was still not healed 2 years later. She could not dress herself, had to be bathed, and she was in diapers. I took her on a cruise every September for her birthday for years. My Dad came along for several years, but the last 3 trips he wanted to stay home. He was sick and tired of caring for her and wanted the week off. My brother and his wife came with us in September 2008 and we booked the cruise for September 2009 while on board. But, my brother never made that cruise - he died suddenly in Jan 2009. I had promised Mom a cruise for her birthday in 2009 and she may not have remembered a whole lot, but she sure remembered that and reminded me about my promise every time we spoke. She was like a little kid waiting for Santa.

 

I was dreading the cruise in September 2009 because she seemed so much worse. I knew I would have to take her all by myself, but a promise is a promise. Mom and I had an amazing time. She seemed so much more alert while on the cruise, and she was so much happier and easier to handle. I guess it brought up the memories of the previous 50 + cruises she had been on. She loved that I did her hair for her every day and beamed on formal nights when she saw herself all dressed up, with her jewelry and make up and her favorite formal dresses. She would have gone to breakfast that way if I let her.

 

Was it hard - you bet, but I had unsolicited help - the staff was incredible. The room steward came running whenever he saw me coming with the wheelchair and helped me get her in the cabin. He made up the room while she and I sat on the balcony. The waiter and assistants in the MDR were so helpful and our waiter insisted on wheeling her to the elevator every night after dinner. The staff up on the Lido Deck was great. The staff members would stay with Mom while I went through the buffet line getting our food. I took her ashore at all the docked ports, so she could look in the shops and buy gifts for her great grandchildren.

 

She died February 21, 2010, five months after our cruise, and I am so thankful I fulfilled her wish before she passed away. I would regret it to my dying day if I had denied her the trip because it was inconvenient for me and a whole lot of work. Lots of people tried to talk me out of taking her. I consulted her foot surgeon, internist and cardiologist, doctors who treated her for years before before the Alzheimer's set in, and they actually encouraged me to take her saying that the mental stimulation would do her good. They thought she was depressed and said that was making her other conditions worse. Her foot surgeon showed me how to clean out her wound and bandage it. The neurologist who only knew her after she was diagnosed with Alzheimer's tried to talk me out of it, but the health care professionals who truly cared about her as a person said,"GO."

 

I cherish every moment of that cruise and all the pictures of my Mom that I took and I don't regret for a minute taking her. Her foot surgeon said that she had more healing on that trip than she had in the previous 2 years and her other doctors noted a huge improvement in her. They said she couldn't stop talking about the trip and that I was going to take her again on her next birthday. I sure would have if she had lived that long.

 

I say just do it, or you may regret for the rest of your life that you didn't.

[romnan]

My wife and I went on a cruise with my wife's sister and a friend a little over a year ago over my objections. I wish I could say that it was a pleasant experience but it was not. I will not go into details out of respect for those that are suffering from Dementia or those that care for those affected.

 

She was in the early stages on that cruise and over the years has gotten much worse to the point that family relationship are more than strained.You must make your own choices. I do wish you the very best

[fireofficer5]

Bring her.

Just insulate her from the other paying guests.

Get a suite, the biggest, because thats where you are going to be spending most of your cruise.

[Heidils]

We had the same dilema. My Dad would love to go with us. He needs a vacation as much as we do, but in our case, we had to decide that Mom needs familiar things around her. She goes through episodes of not knowing who he is and being afraid of him.

 

Again, in our case it wouldn't be a kindness to her.

 

I certainly can understand the wanting every last moment with our parents, but as a poster said, sometimes we want to bring them for US!

 

We have a wanderer now, and I'm sure I wouldn't sleep at night worrying.

 

A cyber hug to all of you going through this discusting disease!

[Silvery Seas Cruiser]

DebJ14, thank you for that heartwarming story. I salute you for your efforts which were above and beyond the call of duty and only a daughter's devotion could have managed. I hope, in fact, I am certain, that life will repay your kindness some way and some day.

[DebJ14]

DebJ14, thank you for that heartwarming story. I salute you for your efforts which were above and beyond the call of duty and only a daughter's devotion could have managed. I hope, in fact, I am certain, that life will repay your kindness some way and some day.

 

Thank you! In spite of the Alzheimer's and all the other health problems that cruise left me with memories of my Mother's happiness and joy, not the painful memories of her slow descent into madness and her loss of self.

 

FYI I would never have considered taking her on a plane. I flew to where she lives in Florida, rented a car and drove her to Port Canaveral. Flying is stressful enough these days for those of us in good health. I would have never put her through the TSA indignities I have endured myself and witnessed happening to others at airports. The security screening people at the pier were so kind and handled her with utmost care. She couldn't be wanded due to an implanted pacemaker/defribrillator. The lady doing the pat down was wonderful and used some common sense that his 83 year old woman was no terrorist.

Edited November 23, 2012 by DebJ14

[rubrrick]

This has to be an individual decision, made by you and imput from her Doctor.

 

Our story. In April of this year, my DW's mom decided that she wanted to take a cruise (both DW's dad and mom love cruising) to Alaska. My DW's dad has Alzheimers. My DW's sister is a retired nurse, so mom paid for DW's sister and her husband to go along as the caregivers. The trip took place in May, and they flew to Vancouver to join the Rhapsody for her first Alaska run of the year.

 

All went well, dad seemed to enjoy the view, but was not sure where he was, but seemed to enjoy, for the most part, the experience.

 

When they arrived back home, DW's mom decided that the trip went so well that another should be planned. This one would be thru the Panama Canal, which was booked for a late October sailing on the Infinity. DW's sister and husband were also booked, again as the caregivers.

 

Oh, btw, we were on both of these trips as well, as fill ins, and to make it a family affair.

 

So, back to the story. DW's dad Alzheimers had progressed to the point where it was not a good idea to take this trip. He was in his comfort zone at home, but not going out. She did not care, she needed a break, so her decision was made to continue with the cruise.

 

In short, it was the biggest mistake she could have made. On night one, not knowing where he was, he sundowned, attacking her, and pinning her to the bed. Remember, he is 92 and she is 89. I won't go into all of the detail, but when our butler called us at 7:10 the next morning, the reason was that there was no response with either knocking or calling their cabin.

 

We rushed to their suite, about 80 feet from ours, we had a card to open their door, to find mother with bruises and crying, and dad fast asleep. When we woke him, he had no clue where he was, and had no knowledge of attacking her the night before.

 

Because of the fact that he was out of his comfort zone, he refused to eat, except for the Ensure that was provided. He lost 6 pounds in the 16 day cruise. All he continued to say is that he wanted to die, and that we were his enemy, and he did not know where he was.

 

Fast forward again to yesterday, and a Thanksgiving feast that we cooked and provided for the folks at their home. My DW's dad is back in his comfort zone, regained 5 of the 6 pounds that he lost, and for a day, was happy, and never once mentioned wanting to die.

 

We know for a fact that the last cruise was not a good decision on DW mom's part. For us and everyone in our family, it was a cruise from hell.

 

I just wanted to pass on a real life story about a person in an advanced stage of Alzheimers.

 

Rick

Edited November 23, 2012 by rubrrick

[cooncat_mom]

It is sad that so many of us have had experience with dementia and Alzheimer's. In my case, my extremely intelligent father who worked in the aerospace industry started his descent after a by-pass operation. The bad? For the next 6 years, we watched him slip away from us while still physically healthy until he died about a year and a half ago. The brighter side? My adult children gathered around with me, growing closer to this delightful man, while we watched the staff of the Assisted Living facility fight to keep him with them right through to his Comfort Care and passing (we were blessed that they loved him). It's so important to know and pay attention to your loved one and the cues they give.

 

My Dad was always homebody, and early on we stopped doing overnights at our house because by 4:30 AM he wanted to go home. However, when we showed up at his room, he was out of his "home" and into the car like a shot. The longer the drive, the happier he was (especially if we stopped at Dunkins!)! We'd drive to the port if a cruise ship was in and look, and then we'd go park by the harbor so he could watch the ferries and fishing boats. But, I'd always watch for the signs that he wanted back to his world. My friend's mother, who is now into dementia, happily travels for an overnight or two as long as my friend is with her. She won't travel with her other children probably because my friend has always been the one she traveled with.

 

An excellent place to learn more and share with others going through this is http://www.alz.org/ This is painful and hard - my heart aches for you all....

Edited November 23, 2012 by cooncat_mom
spelling...

[Heidils]

Dear Rick

 

Wow...I hear you. Spent last night with Mom while Dad had to go out to help someone. She assured me he wasn't my father, and that she never married. Dad puts a chair by his door so as to hear her when she comes in an stares at him, not knowing who he is.

 

Alzheimers patients become paraniod and would never in their right mind do what they sometimes do.

 

So so hard!

 

Another forum, I know but worthy of help.

Edited November 24, 2012 by Heidils

[Heidils]

It is sad that so many of us have had experience with dementia and Alzheimer's. In my case, my extremely intelligent father who worked in the aerospace industry started his descent after a by-pass operation. The bad? For the next 6 years, we watched him slip away from us while still physically healthy until he died about a year and a half ago. The brighter side? My adult children gathered around with me, growing closer to this delightful man, while we watched the staff of the Assisted Living facility fight to keep him with them right through to his Comfort Care and passing (we were blessed that they loved him). It's so important to know and pay attention to your loved one and the cues they give.

 

My Dad was always homebody, and early on we stopped doing overnights at our house because by 4:30 AM he wanted to go home. However, when we showed up at his room, he was out of his "home" and into the car like a shot. The longer the drive, the happier he was (especially if we stopped at Dunkins!)! We'd drive to the port if a cruise ship was in and look, and then we'd go park by the harbor so he could watch the ferries and fishing boats. But, I'd always watch for the signs that he wanted back to his world. My friend's mother, who is now into dementia, happily travels for an overnight or two as long as my friend is with her. She won't travel with her other children probably because my friend has always been the one she traveled with.

 

An excellent place to learn more and share with others going through this is http://www.alz.org/ This is painful and hard - my heart aches for you all....

 

Ditto Ditto Ditto!

 

The people at Alz.org are some of the kindest people I have met. They never shut you down and let you talk. I'm in school now to be able to work with them, and help others. Great example of human kindness.

Edited November 24, 2012 by Heidils

[rubrrick]

Dear Rick

 

Wow...I hear you. Spent last night with Mom while Dad had to go out to help someone. She assured me he wasn't my father, and that she never married. Dad puts a chair by his door so as to hear her when she comes in an stares at him, not knowing who he is.

 

Alzheimer's patients become paraniod and would never in their right mind do what they sometimes do.

 

So so hard!

 

Another forum, I know but worthy of help.

 

Heidils, thanks for sharing your story. I hope by the time we reach that age, and Alzheimer's hits people of age that is not that old sometimes, that science has found something that will help.

 

And you are so correct, that it is extremely difficult in many cases.

 

Bless you!:)

 

Rick

[Heidils]

Heidils, thanks for sharing your story. I hope by the time we reach that age, and Alzheimer's hits people of age that is not that old sometimes, that science has found something that will help.

 

And you are so correct, that it is extremely difficult in many cases.

 

Bless you!:)

 

Rick

 

On a happier note....Hubby laughs at me for my CC fetish....

 

This is exactly why! It's my out! There could be worse things. I'm halfway packed for a cruise I take in 20 days.

 

He knows that we have to start planning a vacation right after this one. Looking forward is the only way to look.

 

;)

[rubrrick]

On a happier note....Hubby laughs at me for my CC fetish....

 

This is exactly why! It's my out! There could be worse things. I'm halfway packed for a cruise I take in 20 days.

 

He knows that we have to start planning a vacation right after this one. Looking forward is the only way to look.

 

;)

 

CC fetish?? You have belonged since 2003, and have under 700 posts.

 

On the other hand, I have belonged since 2005, and coming up on 12,000 posts! Yikes! But wait, there are some that joined about the same time that you did, and have over 30,000 posts. Now......that is a fetish!!:D

 

I hope your next cruise is wonderful! We are gone in 4 days to Puerto Rico, and our ship, the Brilliance sails one week from today!

 

Cruising, what a way to go!!;)

 

Rick

Edited November 24, 2012 by rubrrick

[Kaboochi]

Thank you every cc poster. I expected a quick answer to my question but got so much more from your posts and I am grateful for your replies. I have decided not to take my mom, as being away from the nursing home would make her very uncomfortable. Here is to every poster:D who deals with this too, on a daily basis. Thank goodness I can leave her in a safe environment and regenerate on my cruise ship balcony. To all of you, I hope you can get this escape too. Laurie

[Heidils]

Hi Kaboochi...I'm from the RI coast as well. We may know each other. LOL Everyone thinks everyone knows each other when we live in the smallest state!

 

Thanks to Rick for his kindness and may you be blessed as well.

 

These are in fact hard times. And yes cruising is the "way to go."

[lady_cruiser]

This isn't a question for Cruise Critic... it's a question for the doctor and nursing staff at your mother's nursing home.

 

Only they know your mother's case and whether it would work for her.

No it isn't a question for Cruise Critic but it is a way to find how other people who has or had the same problem to come together and share their experiences.

[travelplus]

One idea could you hire a respite caregiver to take your mom on the cruise? Most state departments would assist paying for this. They don't care where the care is given so as long as you pay for the accommodations etc. You could get a cabin for the respite care giver and your mom. Secondly having a cellphone for emergencies is vital. And also contact the Special Needs Department at RCCL and let them know your concerns and I'm sure they would work with you.

[Kaboochi]

One idea could you hire a respite caregiver to take your mom on the cruise? Most state departments would assist paying for this. They don't care where the care is given so as long as you pay for the accommodations etc. You could get a cabin for the respite care giver and your mom. Secondly having a cellphone for emergencies is vital. And also contact the Special Needs Department at RCCL and let them know your concerns and I'm sure they would work with you.

 

Thank you your information. Unfortunately her condition has deteriorated and can't be away from her nursing home care for more than a few hours. Thank you again though.

[Eriksgarden]

What a loving person you are to think of your mom like this.

[racnwdow]

Does she ever have problems with sun downers? I would hate for a new place to send her into a panic or rage. Also, coupling that with different hours and sun downers might be a real problem. Talk to her staff and Dr and see what their recommendation would be.

 

My mom would have had a very difficult time with the new place.

[JFontaine]

I realize that the original poster made her decision, but since this thoughtful thread might help others I want to add this: only people who cruise frequently truly understand the nature of this unique travel, both the good and the bad in terms of ease and stress. Unless someone's doctor knew about crowded embarkations, muster drills, and even rare emergencies like what recently happened on Carnival, they only know part of the story. All the best to everyone dealing with these difficult times.

[rinakop]

This will be the 3rd cruise we brought my MIL, with dementia, on. Gratefully, we are in a Haven Suite and the extra attention helps, for our sake. She lives with us, so as long as she is with us then she is fine. She was a social butterfly her entire life and loves music, so she loves the heck out of the cruises! We actually enjoy her a little more, to see the delight and surprise in her face. She gets the okay from her doctor, she moves a little slower but, again, it helps being in the Haven with less people. She loves any kind of attention and people just adore her, she's friendly and always loved to "party". She can get anxious so we don't even mention it to her until the morning of - and then it's a surprise!! My husband will stay behind or just lounge around with her and I can run with our kids who we will be joining us in their own staterooms in the Haven. I may get a tracker for her to wear on the ship, just in case, she doesn't wonder but to be safe. We stick a luggage tag with our cabin number on her walker and make all the staff, reservationist, etc. know she has dementia. Our only son died 10 yrs. ago on 3/25/04 at the age of 22 and we have 2 daughters (coming with their beaus) and since birth all our kids went on vacations with us (people would ask us why bring the kids and its because we enjoy their company) and since losing him we look at it like we have that many more memories and time spent with him. It's a personal decision The great thing, we have some hysterical memories with her on the ship - like her asking the piano player to play a song and then request the same one right after, and once he figured out why, he laughed and played it again for her - funny things like that! :) We pack our patience and smiles - which you need anyway, don't you?

Edited December 31, 2013 by rinakop