Does anyone have experience traveling with someone with dementia for a long trip?

My sister has lewy bodies dementia. she is in a MC. I visit here every week and take her out for the day. she is very mobile, but I can never leave her out of my sight. I would talk to her current care givers. My sister was just moved in Nov from Personnel care to MC in the same facility and her confusion has increased since the move. Her doctor said that was normal and any move increases confusion.

The new memory care unit may be able to give suggestions on transport.

I considered transporting Mom from Maryland to a care facility in Florida.

The care facility in Florida said they could suggest transport options and they would track Mom all the way down the east coast. They also said if I flew Mom in a private plane they would drive to the airport to pick Mom up. This facility has a lot of folks moving in from out of state and could provide support.

You can get senior transport services.

Dad would take Mom (dementia) on cruises. Mom wanted to do some of the excursions. Dad would tip the excursion leader in advance, tell the leader Mom had dementia and to keep track of her.

Mom always made it back to he ship.

I'd also consider engaging a non emergency transport service designed for long distances, These typically provide modified, state of the art, Very comfortable vans that have windows, a bed, a toilet, seating, AC, TV's, and usually 1-2 certified caregivers who accompany the patient. They can transfer the patient anywhere within the van as needed. If desired, a RN can be provided to travel on the trip, too. The RN can administer wound care, oxygen, meds, etc. Long trips are not broken up - the ride goes from start to finish without a stop (except for gas). Meals are provided. Limited numbers of family can also travel in the van, plus, there's room for luggage. It's not cheap, but roughly equivalent to first class airfare. These long distance non emergency transport service companies specialize in transporting people safely and extremely comfortably between very long distance care facilities. It takes a tremendous amount of the burden off the family members' shoulders.
Good luck and best wishes.

Based on the responses you have gotten, this sounds like a case by case thing. In my mother's case, I would say "no way, no how!"

Hubs and I once decided to take my MIL (age-related cognitive decline) and my mother (ALZ) to a swanky restaurant in the town where my mother last lived for Thanksgiving. It was an hour away. We were not even on the outskirts of our town before Mom was asking "are we there yet?". It was a LOOONNNGGG hour and we still had to return home! Mid-trip home, Mom had had enough and decided she was getting out of the car and she opened her door. At 70 MPH. My MIL saved her, but only by offering to let her get out on her side, which was closer to the shoulder, and she opened HER door. Thankfully, we had made sure they were both buckled in, so that bought us a little time before they figured the buckles out too. It was a harrowing 30 seconds or so until we could get pulled safely over, get the back doors closed, regain our composure, and put on the child locks. They both then entertained themselves running the windows up and down as far as they would go with the child locks on.

Needless to say, I learned to always lock the doors when I had my mother in the car. After that incident, I noticed her often wanting to roll down the windows and reaching for the door release instead. I later tried to drive her 15 minutes to visit a friend and she was miserable the whole ride. She thought we had been in the car for hours and was mad that I didn't let her get out to stretch her legs. On another occasion, she was tired of riding, so she tried to take over the steering wheel.

I also often took her with me to run errands just to get her out of her facility, but as soon as we got out of the car, if I didn't basically keep one hand on her, she would try to find her way home (wherever that was on that day in her mind). More than once I had to hunt her down in area businesses. I printed a flyer with her photo and my phone number and distributed it at places we frequented, asking them to call me if she turned up alone at any of them.

The two big problems Mom has with car rides is that she has no remaining sense of time and distance, so every ride seems like an arduous journey to her, and that once she gets somewhere she is so disoriented that she becomes anxious. My biggest problem with her traveling is safety in the car and then dealing with her disorientation and subsequent elopement once we get somewhere. I've learned that going at all is simply not worth the upset to her stability and happiness (not to mention my sanity) and I don't move her at all unless absolutely necessary. Like you, I would like to switch MC's (billing issues with the current one) but I'm going to refrain unless the issues start to affect her care.

If you don't have to move her, I wouldn't. It would be easier on your mom if you bought a plane ticket for yourself and visited more often.

Replying to yarivush. We flew at 10 am when she was alert and happy. She had no behavioral issues at that phase of her life. No sundowning issues at that time of day. I needed to admit her by 3 or 4 pm. Only issue was that MC needed to reconcile her meds that I already refilled. However state laws required specific packaging so she went a day without. Pharmacy needed a little time to order and that could not be started until she was admitted. I was able to do her daily Lantus injection a little early before I left her. I had the option of her spending a night with me.

If Mom is getting good care where she is , I would leave her there . That is her home .

sj1966: Change is very difficult for someone with dementia. Ergo, don't move her.

We did a 14 hour drive with my MIL. When she began to get confused or agitated, we stopped either at a Walmart or for a fast food hamburger. She was familiar with both places, they are quite similar and she quickly settled down the moment she walked in the door. At the time it seemed like a magic trick. The trip took 2 days because of all the stops. There were 2 of us, she did mess with her seatbelt frequently. We were relieved that she slept well in the same hotel room with us.

If your mother is being well cared for in the memory care facility she's in now, leave her there. Why move her now? If she's used to where she is and it's familiar to her, don't put her through the ordeal of being transported a long distance then being put in a totally unfamiliar new place.

It's very likely she will not be able to acclimate to a new facilty and all the new people who are strangers to her.

I moved my mom 700 miles away via first class 2 hour flight. She was mobile with a walker. I requested a wheelchair. Both trips involved an airport 20 minutes away. She wore disposable underware with a bathroom trip just before and just after the flight. I also carried 2 disposable pads for the seat.

To her it was an adventure. She was admitted late in the afternoon and I stayed with her until she finished dinner.

Logistics:
Depends on mobility.
She was wait listed, but once accepted, she required a TB test. I had to pre purchase bedroom furniture and set it up before her arrival
I had to donate her old furniture rather than move it. I was very lucky to find another resident family member who had a daughter who needed a bedroom set. The mattress was tossed out by the MC
I packed up her clothes and most personal stuff. It moved with me in my moving van...the reason for the move. The most important items to move were a few wall pictures of long deceased siblings and all of her photo albumns
I packed only essentials that would go in 2 suitcases and my travel bag was only a carry on..

If I think of anything else, I will re post

I'd be more concerned with how completely confused and disoriented she'll be once she arrives at the new place than a 10-hour car ride that I'd never attempt in a million years.

If she's settled in her current place, I'd think twice about moving her.

It all depends upon the person. My Mom and I travelled a lot. In fact, she always wanted to be on the go. When I would see her, she would say "Let's go."

The problem toward the later days, was that I could NOT safely transfer her from the wheelchair to the car seat and back out. She could hold her bowels, and her Depends (and liners) could catch most of the urine (she was incontinent). Otherwise, my Mom thoroughly enjoyed car trips. We ate in the car and she liked that.

My suggestion to you is to take your Mom for a ride or 2, like about 1 hour each (no stops). See what happens. Will she eat and drink in the car or does she want to leave the car to eat and drink? Does she try and open the door while the car is moving? Does she try and get out?

There are a lot of different dementia behaviors. It is hard to predict what one will do with certainty. However, you can get an idea if you do shorter tests.

Good luck and I hope the trip is uneventful.

Some years ago I traveled with my mother on a Caribbean cruise. It was like traveling with a 3 year old. She was perfectly mobile (too much so). She had been diagnosed with Alzheimer's some years earlier. I lost her once on board the ship and had crew members searching for her. Most nights I slept very lightly so I could hear her leave the cabin. By that time I was cutting her food for her and the dining steward very kindly started doing it for me telling my mother she was a very special guest. She took offense (and I can't blame her) when she was treat like a child, but a special guest she could accept. On shore excursions she was fine and I walked her all over creation to tire her out enough so I could get some rest. Over all the trip is a special memory I can recall and am glad I took the opportunity to travel with her before her death. I would suggest if possible to have a second person along to relieve you.

My DH aunt seemed to enjoy the trips when we were escaping hurricanes. Did great in a hotel. Etc. but I was with her all the way there and back to her home so she wasn’t going to a new environment.

I think the trip is one thing to consider and the destination is another. If mom is happy where she is, I would not disturb her unless there is no choice.

Ive done many trips with my mother, but none so long at one time. I would recommend making it at least a two day trip with breaks for toilet, shopping, and sightseeing. Seeing my mother with wind in her hair obviously remembering something is a great joy. Take some snacks, good music, and a good friend or a caregiver for support and help... I have a car with 3 front seats so it's a lot of fun...and yeah..get some barf bags just in case :)

if possible try breaking up your trip to 5 hours each and stay at a hotel/ motel along the route. It will be a lot more doable for you both.

There are some services that will transport, and they allow family to travel with the client. But it's pricey.

A 10-hour car ride will be difficult for her (and you). If you can get another person to be with you, and to help with the drive and with your mother, that will make it more do-able. If she's a wanderer, you'll have to pay attention to where she is at all times. Depending on her abilities, someone will have to help her with toileting, etc. Get plenty of adult diapers and pads to put on the seat of your car in case of incontinence. Pack food, if she has special food needs, or if she is no longer able to eat in a restaurant. It's a good idea to pack things to drink and snacks. Plan for several breaks to stretch your legs. Have a change of clothing and her medications in an overnight bag, easily accessible. It will be good to have her near you in a senior residence, so that you can visit often and oversee her care more easily. All moves are difficult for seniors, especially when they have dementia. Give her a few weeks to get used to the new facility and speak with the staff about how to help her get oriented. All the best to you both!

Yes,
Ive transported my elderly Mom with stage 5-6 dementia for over 2 years. Put the car/window lock on and break the trip up. I use a purewick at night and poise pads in her diaper.
Mom loves music so she enjoys the road trips and I bring her blanket and echo photo album to make the hotel room seem like home.

I would not move her. Change really effects them even may cause more decline. If she is incontinent, I would not even attempt it. Airplane it better be nonstop. Being is strange places may cause anxiety and that u do not need on an airplane. At her stage, leave her where she is.

Unless she is sedated, I would NOT even consider driving 10 hours with someone that qualifies for memory care.

Is the MC she is in bad? Who is her POA? If she is not mistreated then I would leave things be.

Is there a reason you can't take her on a direct flight? Or even 1/2 or 3/4 of the way by air and then have someone meet you in that city to take you the rest of the shortened way?

A 10-hour car ride would probably need to be broken into 2 days. This means a hotel and restaurants. Do you trust her in a car? She wouldn't panic and try to unbuckle her seatbelt and open the car door? Or continuously yell "Help!" out the window like my Aunt did?

If you attempt a car ride will she need meds for anxiety or sleep? Is she on any now? I would definitely take another person with you so you can have breaks and go into rest stops without her, and someone can distract and entertain her (especially if you do all 10 hours in a single day). She will be disoriented and this may affect her behavior.

No experience, but can I ask you if you have made some trips of a longers or shorter nature with her in the car? And how have those trips gone for all of you?