Travelling with Dementia

[licra]

Hi, I am hoping that someone can give me some hints and help to make our cruise a great holiday.

We are travelling with my parents. When we booked this cruise on Voyager of the Seas over 12 months ago we new that my father had been diagnosed with early onset dementia, but thought (probably foolish in hindsight) that he would be good ( for want of a better word) for 3yrs. My issue is now that he is beginning to show increasing signs of dementia (ie: no good at directions, telling time etc) how do we keep tabs on his whereabouts, he is still an independent man and i don't want to restrict his movements but on a ship this size i am worrying. Also should we advise RCI of his issues and what would they do about this situation.

On a side note, i am wanting to make this a great holiday for my Mother also as this has been a very hard year and coping with all the stress is wearing her down so i was wondering if anyone had ideas on making this a stress free holiday for her, i am planning on taking over as much of dads care as i can but want to do something special for her- she's not much of a fan of spa and beauty treatments.

Any help or thoughts would be greatly appreciated.

Lisa

[scubagirrl]

Originally Posted by licra

Hi, I am hoping that someone can give me some hints and help to make our cruise a great holiday.

We are travelling with my parents. When we booked this cruise on Voyager of the Seas over 12 months ago we new that my father had been diagnosed with early onset dementia, but thought (probably foolish in hindsight) that he would be good ( for want of a better word) for 3yrs. My issue is now that he is beginning to show increasing signs of dementia (ie: no good at directions, telling time etc) how do we keep tabs on his whereabouts, he is still an independent man and i don't want to restrict his movements but on a ship this size i am worrying. Also should we advise RCI of his issues and what would they do about this situation.

On a side note, i am wanting to make this a great holiday for my Mother also as this has been a very hard year and coping with all the stress is wearing her down so i was wondering if anyone had ideas on making this a stress free holiday for her, i am planning on taking over as much of dads care as i can but want to do something special for her- she's not much of a fan of spa and beauty treatments.

Any help or thoughts would be greatly appreciated.

Lisa

A few years back, we took my mom on an alaska cruise in her early stages. She too, was quite independent at that stage. (forgetting names, getting disoriented in strange places)

The first time she wandered off and got disoriented, one of the crew brought her back to us.. . The second time this happened, we were told that someone needed to be with her at all times or she would be confined to her room with someone always with her. She was VERY upset having to be "babysat" 24/7.

She was NOT far advanced, just got confused in a strange place and odd surroundings.

I would check with the ship as to how they handle these issues.

[Sparky74]

A simple tip that may help in a small way:

Bring some fridge magnets to put on to the cabin door. This makes it a lot easier to find your cabin. Even without dementia, it's easy to get confused in those long corridors with lots of identical doors.

[room010]

Sorry to hear you are dealing with this distressing situation but the fact is that one of you will be responsible for keeping an eye on your father at all times, especially if he is prone to wandering off. The cruiseline can't and won't do it. If his condition continues to deteriorate I think you have to ask yourself if a cruise is going to be an appropriate or relaxing holiday for ANY of you?

[MJC]

We are going through this with my mother as well. Writing things down is very helpful for her, as is establishing a daily routine, even on vacation. If you can follow as much as possible his routine when he is home, that will help him a lot. What does he eat for breakfast? What does he do next, go for a walk? Watch some TV? When does he eat lunch? That kind of thing. Try new activities as a group, and give him some independent time for activities that are usual for him.

I suggest a lanyard with a pouch for his cruise card. You can write your daily schedule on a piece of paper and slip it in also, and include your cabin number, deck number and name, cabin phone number, and where he can find you when you are doing separate things. You could make a set of them for everyone in your party, so he doesn't feel singled out. Give your cabin steward an alert that he may have trouble finding the door, so he/she can help out if he or she is around.

Try to set a schedule for meals and eat them in the same place every day, so that there are fewer variables for him to deal with. Try to use the same path to your cabin each time, and point out landmarks for him.

Have him wear a distinctive shirt or hat so that he is easy to recognize in a crowd, or by other people if you have to look for him, if you are truly worried about him getting lost.

The best thing I can do for my dad at this point is just to give him time away from my mom a bit, and do something fun, whether that means mini-golf, or a long walk, or going for a swim, or just sitting and reading the paper together. He misses adult conversation, and needs to vent sometimes. You don't need a fancy spa treatment to give your mom some much-needed rest.

I sometimes feel like the Wizard of Oz, working behind the curtain so things go smoothly for my dad and so my mom isn't unduly stressed and confused, but sadly that is just the way it is right now, and I don't mind because I love them. My mom can be resentful if she thinks we're treating her like a child, so I try to organize things quietly so she doesn't see it and have her feelings hurt. It gets easier with practice.

I think it's great that your family can have this experience together while it's still possible, you'll have some wonderful memories.

[Kartgv]

You're in a very difficult position - we've been there with 2 of our parents, though we never tried a cruise with them. You do the best you can for them, but it's easy to keep second-guessing youself and wondering if you could have done more. You don't say if he's ever been on a cruise before. If so, and if he enjoys them, then that makes the situation a little better. If not, then I'd think again about adding the stress of a very new and different situation to the confusion he already feels. I'd also get input from his doctor.

I would definitely prepare yourself mentally for having to cancel just before final payment is due if he seems to be deteriorating faster than expected. We took my father out for a special birthday dinner when he was in the early stages and thought he'd be fine. It didn't work out well - he made a request that no one could interpret, then flew into a completely out-of-character rage when he couldn't make himself understood. You might want to do a 'test run' short trip or outing somewhere unfamiliar to him just prior to that final payment date and see how he handles it.

We wish you all the best - make sure to treat yourself well and be grateful for all the good times you have had with your parents.

[callmewhatever]

Lisa do u have an email address where I can contact u about this?

[licra]

Originally Posted by callmewhatever

Lisa do u have an email address where I can contact u about this?

Sure. You can email me at: cralis @ bigpond dot com

Thanks

[licra]

Thanks for the help so far. It does help knowing dad has cruised before and he was in the navy so is very familiar with ships, it's just the size of this ship & his condition that's daunting. I don't plan on letting dad just wander off but don't want him thinking he is being babysat either, I want to be in the background so I'm there if he needs me or better yet if he thinks I need him( for help with the kids).

Great idea about the magnets on the door, I am assuming the door is metal.

We usually try to stick to a routine for him as suggested which is easier on a cruise as we always eat breakfast together, although we will have to curtail dads early morning walk to get coffee & fruit unless my husband or I are with him.

MJC I understand about your wizard of oz comment - my thoughts too. But all I can do is be there and help in any way I can.

I had thought about taking a small cheap whiteboard for us to write things on for him in the cabin as in times, shows things he wants to do etc. not sure if that would work but only one way to find out.

[Aus Traveller]

We are helping my mother-in-law who is in the early to mid stage of dementia, so I understand the situation. The ideas put forward are helpful.

The walls and door of the cabin are metal so if you take a few magnets you can put up signs regarding timetable or whatever. We always put the daily newsletter up on the cabin wall.

Alerting the cabin steward is good, but I would be cautious about officially advising of the situation in case they say either that your father cannot cruise at all, or that he must be confined to the cabin unless a family member guarantees to be with him at all times. In reality, probably one of you would be with him most of the time.

[badgerbill]

I would imagine if you disclose to RCI, and i am sure the terms and conditions of passage mention something in it about health issues and disclosures, you will need to prove his competency to travel.. if his Dr thinks he is fit to travel and you can provide 24/7 care well and good ....the medical clearance for his travel insurance you would think should be good enough proof but i wouldn't hold my breath.....

The other thing is your cruise is still four months away and god forbid the dementia worsens in that time but it must be considered a possibility.... unfortunately it doesn't run to a timetable.....i have known this awful condition through a very close family member and even in early stages is a major challenge to not only the sufferer but those watching over them....... My opinion only... but if I had noticed a decline in my parents dementia i would have to be seriously rethinking the whole idea of cruising before the time for final payment is due...as i state "my personal opinion only" wishing you all the best............

[Tara Jane]

We befriended a lovely couple on our last cruise who were travelling with their 2 daughters, s i laws and grandkids. We soon realised the lady wasn't quite as "with it" as her husband. After another couple of chats and meals the husband whispered to me that she had early dementia. By day 6 she was getting extremely agitated and just wanted to be home. They were a lovely couple but it all became too much for the dear lady despite her wonderful caring family.

[Feen Machine]

Originally Posted by licra

Hi, I am hoping that someone can give me some hints and help to make our cruise a great holiday.

We are travelling with my parents. When we booked this cruise on Voyager of the Seas over 12 months ago we new that my father had been diagnosed with early onset dementia, but thought (probably foolish in hindsight) that he would be good ( for want of a better word) for 3yrs. My issue is now that he is beginning to show increasing signs of dementia (ie: no good at directions, telling time etc) how do we keep tabs on his whereabouts, he is still an independent man and i don't want to restrict his movements but on a ship this size i am worrying. Also should we advise RCI of his issues and what would they do about this situation.

On a side note, i am wanting to make this a great holiday for my Mother also as this has been a very hard year and coping with all the stress is wearing her down so i was wondering if anyone had ideas on making this a stress free holiday for her, i am planning on taking over as much of dads care as i can but want to do something special for her- she's not much of a fan of spa and beauty treatments.

Any help or thoughts would be greatly appreciated.

Lisa

My heart goes out to you , but I would seriously think about putting your dad in respite care,and tell him he won this holiday and don`t mention about the cruise in front of him ,talk about his holiday ,. Cause the ship is so big and if he gets lost you could not find him ,you will be worried out of your mind and so will your mother. Good Luck ,

[rugbypopsie]

Heart goes out to you re the dementia my my mum has it too. We have cruised together on ships as big as the Diamond Princess. I would not miss out on this time together as unfortunately the disease progresses..make memories while you can. I would not let the ship know but have information on him in case he needs a crew member to show him back to cabin...heck I get lost and forget my cabin number. The early stages are worse..when they vacillate between trying to remain independent and forgetting everything. Have meals together, plan day together use a highlighter on the daily patter so he knows what he is doing. You will still be able to give your Mum a rest.

Good luck.

Sue

[happyaussies]

I agree with Feen machine...I think you can not expect dad's condition not to get worse by the time you cruise.

I would think about givng dad a respite holiday and you take mum away as I think she and you need it and to have some good memories.

My heart goes out to you all.

We didn't have dementia in our family we had cancer.
My mum & dad are no longer with us and I miss them every day. I wish I had taken my mum away on a cruise....so do it. don't cancell because you can't take dad!

B&B

[Gold Coast Cruisers]

I agree with 'Happyaussies' that it might be an idea to give your Dad some Respite care so as your Mum can have the well deserved break she probably needs if she is the main carer of your Dad.

I have been on the Voyager of the Seas and I can assure you it is a HUGE ship and very easy for us to get lost let alone someone with Dementia. The size of ship and he being unfamiliar with his surroundings could easily put so much stress on your Dad that he just may not be able to cope. How many days is your cruise?
Also what type of cabin do you have? Maybe look at one with adjoining doors or even better a Suite so as you can all be together all the time.

Good luck and hope we all have help in some little way but I know through my experience with my Mum at the moment that it's not easy when they are at home let alone taking them out of their routine.


Jill

[Kiwi Kruzer]

We have friends who were also faced with this problem. She decided it was now or never so booked and enjoyed 2 wonderful cruises. Both involved flying to/from the ship.
This was the problem.
Even though she bit the bullet and booked business class to make it easier for him , the big problem came at Sydney Airport when she could not leave the luggage on its own and he needed the bathroom. To cut a long story short , she waited outside for him, but he came out another door, was completely disoriented and thus ensued a major security scare in the terminal.

It is a very difficult time of life.

[bazzaw]

I hate to have to say this - but I believe that you are going to have to accompany him EVERYWHERE he goes on the ship. Ships are particularly disorienting - and I am sure all of us here have our own stories of how we have become "lost" on a ship. I have good friend who is "quite good" - but gets lost easily. I have to accompany him to the toilet when we are in shopping centres, otherwise he comes out and has no idea of where he came from.

Barry

[licra]

Thanks to everyone for your thoughts and help. I have approached the subject of respite for dad but mum does not want this to happen yet and she becomes quite agitated so i have left the issue alone for now and will just let her make the decision when she feels good about it, as suggested by both Mum and Dads doctors. Both Mum & Dad want to keep going on the cruise as it will most probably be the last major extended Family holiday that Dad will be able to do.

We have booked connecting cabins on deck 3 so will be able to be on hand at all times. We usually accommodate Dad when we go out ie: to the shops etc by just choosing seats near the toilets so we can watch the doorway, and just being in the background so we can 'catch' him if need be. My 2 boy's are looking forward to being Poppy's shadow and have already volunteered to do the early morning walks for coffee.

Lisa

[rugbypopsie]

Originally Posted by licra

Thanks to everyone for your thoughts and help. I have approached the subject of respite for dad but mum does not want this to happen yet and she becomes quite agitated so i have left the issue alone for now and will just let her make the decision when she feels good about it, as suggested by both Mum and Dads doctors. Both Mum & Dad want to keep going on the cruise as it will most probably be the last major extended Family holiday that Dad will be able to do.

We have booked connecting cabins on deck 3 so will be able to be on hand at all times. We usually accommodate Dad when we go out ie: to the shops etc by just choosing seats near the toilets so we can watch the doorway, and just being in the background so we can 'catch' him if need be. My 2 boy's are looking forward to being Poppy's shadow and have already volunteered to do the early morning walks for coffee.

Lisa

That sounds like a wonderful plan...I am sure you will be able to give your Mum a bit of a break and still have fun...we did. We also took a cruise with my father in law when he was very incapacitated...shortly after we discovered he had terminal lung cancer and he only lasted a few months...we were so greatful to have those memories of happy times together.

Sue