Have any of you ever travelled with someone with Dementia?

[arielmomma]

My mother (age 58) has been diagnosed with mid-stage dementia. In the month that she has been living with me, she has only had 2 really lucid days.

My family has never taken a family vacation. My mother always, and just recently repeated, that she wished that she could have taken us to Disneyworld.

Pardon me, but my brothers are totally worthless when it comes to her care and support. Its all on DH and I and I would like to take her to WDW.

My children are 5 & 2, so they can be a handful on thier own (mainly just the 2 year old) without another person who needs a lot of care.

I guess I want to know if any of you have ever done this? Have you ever taken someone with dementia and young children with only 2 adults? If so, any advice?

I know it sounds crazy, but I know that a nursing home is in the future and I would really love to give this to her while she still has some memory.

Thank you.

[BuzznBelle'smom]

I wouldn't do it. My mom died of dementia, and was bi-polar my whole life, so she was high-maintenance for as long as I can remember. Here are a few of my random thoughts:

First off, my mom was diagnosed with "early dementia" in ~ Sept. She died the following May. When I last saw her (I lived 200 miles away) at Christmas, she knew my kids' names but not their ages. She knew it was a holiday, but thought it was Easter. She didn't know why we had gotten presents for her.

When my youngest was born that Feb., she was told--repeatedly--that he was born. She was unable to talk to me on the phone by that point. By the beginning of May, she no longer recognized my sister (daily caregiver/visitor). She could no longer speak. She could chew and swallow, but not remember how to use a fork or otherwise get food to her mouth. Sis and I were discussing a feeding tube, when Mom mercifully died.

I truly hope that you get a slower progression, but you don't know, our decline was much more rapid than we would have imagined.

Secondly, we took my mom to WDW before the dementia hit. What a disaster! It was bad enough having two (at that time) young children to keep an eye on, my mom couldn't do anything for herself, she would wander around, then she would cry because she was wrecking the trip for everyone else. It was just miserable.

The best thing I can say, and I mean this in the kindest way possible, is that the mother you would like to treat to DIsney isn't the mother you have right now. Does that make sense? You're trying to fulfill a fantasy that simply can't be. My mom had said the same thing--that she had always wanted to take us to WDW. I ended up using my small inheritance to get DVC--I knew she'd want us to do something nice with the $$, as a family.

I'm sorry I couldn't give you a more positive outlook. This is a really tough thing to deal with. Good luck.

[arielmomma]

Thank you for your honesty. I sort of feared that it would be too much. It is just a really emotional time and I would love to be able to do it for her, but I know that it is unrealistic. Thank you for sharing your experience.

[BuzznBelle'smom]

Honestly, I wouldn't wish the whole experience on anyone. Perhaps you can just vow to yourself that you won't make the same mistake with your children--and take them some time in the future. That was kind of how I looked at getting DVC, that she was sending them on nice family vacations that we never went on when I was growing up.

I wish you strength on this difficult journey.

[RMulieri]

It would require a TREMENDOUS amount of planning and patience, and she may not handle the crowds well among other things. My mom is a nurse in an Alzheimers home, and I work with them at the hospital when they get admitted..When you take an adult with dementia out of routine and normal surroundings it can make them highly agitated and more confused.Trying to control a confused,upset adult who is out of their element, is NOT the same as being able to control your children.I fear it would be just too much on you, given the stage of dementia and the ages of your children, I understand the need to want to grant your Moms wishes, to make some lasting memories.But I honestly don't think it would be a good idea.Now if all your siblings were to get together and make it a grand gathering with someone to explicitly care for your Mom then I would attempt it.

[Kallista]

Maybe you could just take your mother and not the husband or the kids. It could be a long weekend kind of thing.

It is sort of crazy, but I'd seriously think about doing it.

We took a vacation with my dad to Las Vegas about a month before he died of a sudden heart attack. It was just a long weekend and we've been tons of times before, but I wouldn't trade that for the world. He had a great time and it was one of the last things that he go to do.

I'd do it soon, though, because the decline can be abrupt once it starts.

[Darcy03231]

Originally Posted by Kallista

Maybe you could just take your mother and not the husband or the kids. It could be a long weekend kind of thing.
It is sort of crazy, but I'd seriously think about doing it.

We took a vacation with my dad to Las Vegas about a month before he died of a sudden heart attack. It was just a long weekend and we've been tons of times before, but I wouldn't trade that for the world. He had a great time and it was one of the last things that he go to do.

I'd do it soon, though, because the decline can be abrupt once it starts.

This is what I would do.

[princess momma]

I wouldn't do it. Maybe if she was in the early stages, but I think WDW is too much for someone in mid-staged dementia. I would probably try to find some other, more relaxing, less overloading for the senses, type vacation.

I'm so sorry you're not getting help with your mom. Been there and done that, it's not fair at all.

[tartemis]

I wouldn't do it either. Traveling and new surroundings can be extremely scary for people with even early dementia. My grandmother died of Alzheimers and in her very early stages she came to visit us. It was a disaster (and with no young kids or crowds to deal with.) She was very disoriented and very scared -- especially in the middle of the night if she woke up. It was the last trip she ever took.

Good luck with everything and hang in there.

[JamesMom]

Originally Posted by BuzznBelle'smom

I wouldn't do it. My mom died of dementia, and was bi-polar my whole life, so she was high-maintenance for as long as I can remember. Here are a few of my random thoughts:

First off, my mom was diagnosed with "early dementia" in ~ Sept. She died the following May. When I last saw her (I lived 200 miles away) at Christmas, she knew my kids' names but not their ages. She knew it was a holiday, but thought it was Easter. She didn't know why we had gotten presents for her.

When my youngest was born that Feb., she was told--repeatedly--that he was born. She was unable to talk to me on the phone by that point. By the beginning of May, she no longer recognized my sister (daily caregiver/visitor). She could no longer speak. She could chew and swallow, but not remember how to use a fork or otherwise get food to her mouth. Sis and I were discussing a feeding tube, when Mom mercifully died.

I truly hope that you get a slower progression, but you don't know, our decline was much more rapid than we would have imagined.

Secondly, we took my mom to WDW before the dementia hit. What a disaster! It was bad enough having two (at that time) young children to keep an eye on, my mom couldn't do anything for herself, she would wander around, then she would cry because she was wrecking the trip for everyone else. It was just miserable.

The best thing I can say, and I mean this in the kindest way possible, is that the mother you would like to treat to DIsney isn't the mother you have right now. Does that make sense? You're trying to fulfill a fantasy that simply can't be. My mom had said the same thing--that she had always wanted to take us to WDW. I ended up using my small inheritance to get DVC--I knew she'd want us to do something nice with the $$, as a family.

I'm sorry I couldn't give you a more positive outlook. This is a really tough thing to deal with. Good luck.

I have a mom in late stage alzheimers and have to agree with everything this poster said. You will doing it for YOU and not her and is destined for disappointment.
God bless you as you deal with the long road ahead. Put your mom in a facility (if she is currently living at your home - many offer respite care) and go on vacation with YOUR family. It'll recharge your batteries, spend quality time with your kids without the other 'child' to worry about.

[arielmomma]

Thank you for all of your responses.

[K and K's Mommy]

Yes, 15 of us took my grandma on an Alaskan cruise for her 80th birthday. This was a woman who had been on her own since age 59, traveled extensively by herself, and was very independent. The trip was HARD.

She was also only in the beginning stages. We didn't even realize how confused she was. The trip and unfamiliar places were too much. Once she got upset because she saw someone who had been dead for 20 years. She often forgot where she was. Luckily there were many who could watch her as we quickly realized she couldn't be left alone.

I'm glad we went as this was her last trip, and really the one place she had never been. When she wasn't really confused, she enjoyed it. But, we had a lot of adult children and grandchildren to help. Plus, my DS 15 months at the time was comic relief!

Best of luck! I've lost two grandparents to Alzheimers, and it is a horrible disease.

[AC7179]

We took my grandmother to Disneyland after she had suffered some mini-strokes.

She did not enjoy it. The trip was stressful, she was easily agitated, and she didn't have a good time. Although I am glad (for me) that we had one last trip together, I can't honestly say it was something she enjoyed.

I, too, would vote against it.

[RMulieri]

Originally Posted by tartemis

I wouldn't do it either. Traveling and new surroundings can be extremely scary for people with even early dementia. My grandmother died of Alzheimers and in her very early stages she came to visit us. It was a disaster (and with no young kids or crowds to deal with.) She was very disoriented and very scared -- especially in the middle of the night if she woke up. It was the last trip she ever took.

Good luck with everything and hang in there.

It is true.Most of the people with Alzheimers I know get severely confused at night time ( called "sun downing" ).They will get majorly agitated, yell out, it makes for a stressful time for ANYONE. To the children of these poor people it is scary and sad to witness, for small children, it is downright frightening and not the way ANYONE should remember their loved one.

[BuzznBelle'smom]

That is so true! That's why I didn't visit my mom in her last months. Well, that and I was 200 miles away with 4 kids, including a newborn. I wanted them to remember her in a good way, not as someone who had no recognition of them. She loved them dearly, they meant the world to her, and I wanted them to know that part of her, not the shell that she became.

Another incident I had forgotten about -just a couple months after my mom's dementia diagnosis, she came up for a weekend. My sister, BIL, and sister's MIL also came--they were up to see my kids in a play. This is something my mom had done many times and always really enjoyed. She really didn't have a good time. She couldn't follow the plot (Cinderella). She couldn't get to and from the bathroom by herself. When she used the toilet at home, um, she left a mess--I had to keep going in and cleaning up after her. She'd been to my house, many times, but mostly sat there because she couldn't get herself around comfortably. Luckily, we had a number of adults who could help her out, but I can't say it was memorable or meaningful in a good way for her.