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There is a new article in the latest Wall Street Journal about families traveling with dementia patients. If anyone else on the forum reads this, I would like to know their thoughts on this topic. I'm unsure about how I feel about this. It seems to be more for the families' benefit to make memories and such. I don't know how much good it does for the actual dementia patient or if it just adds more stress for them. May it even lead to a set back? Of course, since this is the WSJ it is more geared toward wealtier families who can travel with assistance and several family members. Many on this forum can barely pay for home health care, etc. How do forum members feel about this topic. What are your experiences or pros vs cons?

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I took mom on a cruise; she loved cruising and wanted to go. Two family members went with us. I'd never do it again.

She got mad because the three of us were talking above her head and she couldn't see or understand what we were saying from her wheelchair. Which we had to push all over the ship and up and down ramps when she insisted we get off in a port she'd already visited multiple times. We had to plan logistics, like not being in halls when throngs of other passengers were trying to get to the dining room or an event. They didn't care that we were overburdened, and sometimes they'd just push ahead of us and scramble around us to get in the elevator that we were waiting for, leaving us to wait even longer. The small bathrooms were difficult. We could only sit where the wheelchair could go, such as the back of the theater and an assigned dining room space where we wouldn't be in the way of other diners. She needed all three of us, and we all had many chores. One person couldn't have done it alone.

I would never do it again. Lots of things happened that I won't get into here, but the three of us agreed that we would never do it again! There was no help from the crew, nor was there anyone on the ship to stay with people who needed a sitter so that their roommates could enjoy time away from caregiver duty.

The time to travel with LOs is before they get sick. As for memories, mine are clouded by the difficulties. Mom enjoyed herself and never had a clue how hard it was for us.
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Reply to Fawnby
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My husband is in the mid-late stages of dementia. My oldest lives 500 miles away. She has a cute and very energetic 2 years old, her in-laws live nearby. Now she is expecting a second baby, and her due date falls in the mid of a vacation of the in-laws. My daughter would like us to come over and stay in the in-laws' house so if she goes into labor she and her husband can leave the 2-years old with us and head to the hospital. She doesn't have other people nearby she trusts, so if I say no she'll be in a bind. Previous trips went fairly well.
My husband adores the kid and is calm most of the time, but now sleeps a lot during the day and wanders at night. Sometimes he tries to get out, but at home we have security doors and keep them locked. Also, he occasional goes to the bathroom in the weirdest places.
I have asked the in-laws to lock all the rooms except the room in which we will stay and a bathroom, and I will take along our carpet cleaner. The trips back and forth will be interesting, but I can handle them. What terrifies me is the stay. I am looking forward to the discussion on this topic for possible hints.
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Fawnby 13 hours ago
My husband had the peeing-all-over-the-place problem. After that developed, we no longer went out. Body waste is a biohazard, and there's no way I'd want peeing husband around a two year old. Your carpet cleaner is a clever idea, but urine from a grown male has a particularly nasty smell, and from my experience in cleaning all of it up around our house, the odor is almost impossible to get out. It usually requires more than one treatment and might require different solutions for each treatment. I'm sure you don't want to leave her absent in-laws with a smelly souvenir of your turning their house into a nursing home. Yikes!

Your daughter needs to be a grownup. She's not in a bind if she finds someone to take care of her daughter. That's her responsibility as a parent! Mommy and daddy, especially with daddy so sick, shouldn't be expected to jump in and fix this. There are plenty of reliable people who babysit. Why not a neighbor who can let the child sleep on their couch on short notice or come over to stay in daughter's house while daughter is in the hospital?

On such a trip, you'd already have enough to worry about with a peeing wandering husband. You don't need a two-year-old on top of that! Locking all the doors, and then where is kiddo? In a locked room? What if husband figures a way to get out and you have to go look for him? Do you leave the child alone in the house? I hope not.

Please tell daughter that dad's health issues make it impossible for you to carry out this nutty plan. He might even have a cognitive setback from being out of his familiar home. Ask daughter to send you pictures of the adorable newborn, and leave the visit for another time.
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I actually just a week ago successfully traveled with my mother who has mid-stage Alzheimers. We took her to the beach for a long weekend. It went much better than I expected. Yes, she had times of great confusion and anxiety, but we had a team of people (myself, my husband, my brother, my sis-in-law) and we catered the entire trip to her needs, rather than making her adapt to our agenda. I think those are the only reasons it worked.

She really enjoyed herself, and I believe it was probably the last time we will be able to do something like that with her. So it's something we all will treasure. Only YOU have an idea of what your LO can and can't handle! If you think you can make it work, it can be rewarding for all.
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Sandra2424 18 hours ago
I am very happy that your trip went well. It sounds very well thought out, especially since it was shorter and you had several family members who were able to help. The article I referred to was promoting world wide travel and extended cruises to other countries, etc.

I feel it was misleading and encouraging people to take these trips without exposing the reality of dealing with dementia. I don't think it was realistic for most families.
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This company has catered to “dementia friendly” cruising for decades.

https://www.elitecruisesandvacationstravel.com/upcoming-dementia-friendly-cruises.html

im not going to say it’s impossible that dementia pts and their families cannot enjoy an occasion like this. But it’s going to be expensive beyond the substantial base fee. Beyond a couple hours, there’s no caregiver respite. Staff is available for an extra and likely substantial charge to watch your loved one beyond that.
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PeggySue2020 12 hours ago
I just wanted to append that even a no holds barred budget won’t fix things with an elder who throws tantums. As Beethoven, a former cruise ship doctor herself, has testified, she’s medically discharged severl such patients. The whole family goes with and now there’s the additional substantive burden of everyone catching an early flight home from another port,
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People who write articles suggesting traveling with dementia patients have no experience traveling with dementia patients or they'd not be writing such articles. Let's face it. Just the toileting issues ALONE are enough to drive a caregiver up the wall, nevermind the other 1000 issues. Ridiculous advice. Bringing my mother to my HOUSE 4 miles away was an ordeal I had to stop doing after awhile!
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Reply to lealonnie1
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I didn't read the whole article, but read a blip that said, "Medical experts say travel is best for early stage patients, warning that trips can become disorienting or risky as dementia progresses." My dear friend is in Memory Care. We always went on road trips together. She is always talking about going somewhere. Can't we go see something we've never seen? I took her out of the facility for one hour in the car. We didn't get out of the car. We drove in a pretty area of the city and I stopped at McDonald's to get her a milkshake which she loves. When we got back to MC, she walked in and was so distressed and disoriented, no matter what I said, it didn't help. One of the caregivers took her under their wing and I left. I thought, I'll not take her out like that again! She never commented on what she saw and I'm not even sure she enjoyed the ride. I felt terrible. Now we walk across a little walkway to AL where there is a restaurant for lunch. That's as far as I'm going. Too stressful for her.
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Reply to vannysgram2
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This topic has been discussed a lot here and hottom line, don't do it. The person suffering from Dementia will not remember the vacation and may not enjoy it. IMO, tge memories will not be that great.

I do feel for Bruce Willis (I actually live in a town next to where he was raised). Not long ago there was something on how hard it was for the family to deal with it and I am sure it is. Watching a love one die little by little. But...they have money to supply him with the best 24/7 care. I would have loved to gave a night aide so I could have slept thru the night. Mom nor I had the money for that.
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Sandra2424 23 hours ago
Having been on this forum, I agree about this traveling issue. When FIL had Lewy Body , my MIL took him on a train for a last visit with family. They traveled from Illinois to California and back. The trip nearly killed HER. He was agitated and hallucinating much of the 2 day trip each way while stuck on a train. I also felt do badly for the other people on the train. We don't live nearby and heard about this after the fact. My brother in law (a physician) actually put them back on a train to go home. They had a 100 yo aunt living with them at the time and at least she had enough sense to put her in a nursing home temporarily while they went on the trip.
Ah, yes. Family memories.
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Family can make memories that don't involve traveling with a person that has dementia. The traveling family memories needs to be done before the loved one started losing their mind.

I was a caregiver for a long time to many people with every kind of dementia. They do not do well when there is disruption to their established daily routine. No one should be taking them any place so far away that they can't have them home within an hour if they need to. You're not going to be making happy memories taking a senior with dementia on a family vacation. They are going to ruin everyone's time and it won't be their fault. Families can make local memories with their loved ones that have dementia. Families need to have common sense here.
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Reply to BurntCaregiver
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Sandra2424 23 hours ago
Thank you for your response. This was my reaction to the article which actually encouraged travelling with family who have dementia. They even spoke of companies who specialize in these trips. I guess they were a WSJ advertiser. You should look at it to see the pics of happy families traveling with their dementia patient.
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