Travel with spouse in middle stage

KathyBol

We have been planning a trip to France for several months. My husband seems to have more pronounced symptoms lately. To be honest, I'm worried that an extended trip (3 wks) , with the traveling to several locations, may be too stressful for him. Has anyone travelled with their loved one? How did you manage the confusion and stress?

ButterflyWings

• Yes
• Meds (for DH, stabilized well in advance of our travel dates.
• Help (a travel partner with us)
• TSA Cares airport assistance
• Low expectations. If we needed to sit out an activity or excursion, no problem. End the trip early? No problem.
• Prayers, fingers crossed & Luck!

CindyBum

I have gotten extra anti-anxiety medications for our travel, which is severely limited at this point. We are about to get on a short flight today (40 minute flight) and I've already loaded her up with them because she is pacing and filled with anxiety about the travel.

Butterflywinds is spot on. Really lower your expectations on the trip. I know now that we'll likely spend more time in the hotel room than out together. That I'll get to explore things on my own, but not for too long. And that managing the travel days with meds/sleep aids for my DW is vital for my own sanity…as well as hers. I've gotten comfortable ordering in from great restaurants and just enjoying a meal together when I can't get her to leave the room, etc. It's such a strange reality we now live in.

Perhaps others know this already, but when they ask for people with disabilities or who need extra time to board, there is no paperwork requirement. At least now I can just take my DW during that call for boarding so the whole line isn't stacking up behind us as she meanders her way toward the plan and seat. Not that I fly with her a ton anymore, but discovering that really made boarding a much, much better experience.

FriendinMaryland

Hello Kathy,

I asked a very similar question in 2022 and got many detailed and helpful answers from our forum-mates. My post was titled:

He's taking her to Europe and she's in stage 5

I think if you just put that title in the search bar, the whole discussion will come up.

Bill_2001

I gave up travel in Stage 4. To put it bluntly, it was no longer fun for me or worth the cost and effort to continue to travel. My wife is now in Stage 6.

My last trip with my dear wife was 5 years ago, in June of 2019. It was not a disaster, but it was not much fun either. I felt that any travel after that would be even more difficult and disappointing, so I let it go.

Getting my wife to the daycare so that I can continue to work is hard enough. I cannot imagine adding the complexities of airports, car rentals, hotels, public restrooms, restaurants, and museums. Even the thought of it fills me with dread.

Incontinence, to me, is a traveling deal-breaker. I need access to a private bathroom, shower, clean towels, clean bed sheets, her wardrobe, and a washer/dryer at all times. Managing her incontinence while on a trip does not sound relaxing or fun for either of us. She would keep repeating "I want to go home" the whole time anyway.

The idea of having friends or family help me with her during a trip had crossed my mind. Sadly, no one ever invites us along, and I am not comfortable suggesting it. Even if someone deigned to invite us, I would simply be a traveling caregiver. I am not going to ask a friend to take my wife to the restroom to possibly deal with a real mess.

Someday, in a time far into the future, in a galaxy far, far away, there is a version of me that plans to resume travel. Whether that day actually ever arrives is anyone's guess.

Love Bill_2001

jfkoc

The air time can be a problem…bathrooms especially!

Lkrielow99

My DH (stage 4) and I took a trip to Europe last September. It was a nightmare. The airport and flying there 9 hours, caused a lot of problems. He was fidgeting and behaved like a 5 yr old. He wet his pants, spilled his drink on the TV, wiped he wet pants on my blanket and the stuffed his wet underwear between the seats. On the cruise ship, He walked out in the hall naked, then wanted to know where his truck was parked. We were on a cruise. It got worse from there. I had too much expectations and was upset a lot. I ended up in the hospital with food poisoning. We took another trip a couple weeks ago ( our last flight). I had little expectations and that helped me. We stayed in the hotel room most of the time and watched movies. He was delusional. This is the end of our travels beyond an hour away. I read that during intense travel, our LO behavior goes into the next stage. We had a lot of confusion and he thought someone else was traveling with us. The trip was not worth the time and money. Take care, Butterflywings is spot on. Lowering my expectations made the last trip bearable. I will not be able to take him on any airlines, maybe a short car ride.

trottingalong

my DH is stage 4/5. We cannot travel. As long as his routine stays the same at home he does pretty well. But traveling to another place, even though it may only be by car, throws him completely off kilter. His confusion escalates dramatically. It’s not fun. Alzheimer’s patients do better with routine. I would say expect to see more confusion and anxious behavior. Three weeks is a long time. I would suggest like the others that you lower expectations and then Be pleasantly surprised if everything goes to plan. Wishing you the best.

Anna2022

I also wanted to travel with my DH (maybe stage 4, edging into stage 5?). And I've planned several trips but ended up canceling them all. He wanted so badly to go one day but the next day could not remember the itinerary and got more and more agitated as the trip approached. It was a nightmare to continually answer his questions and repeated comments of "why was I not consulted about this trip?." You know what I'm talking about!

His stress also became somatic - last year he fell and fractured his back and throughout the year when stressed, his pain reappeared. Now, almost a year later, when planning the last trip his pain increased dramatically. Eventually I realized that he would not be able to manage airports, tours, etc due to his agitation, anxiety, confusion, memory and/or pain and I would be a caretaker, not a participant, even with much lowered expectations. I tried to get family or friends to go with us, even offering to pay their way, but no one could or would. When I finally cancelled the last trip, I felt such a sense of relief and much of my stress disappeared. That helped me know it was the right decision.

How did he handle it when we cancelled? He had a moment of "I'm very disappointed" but then forgot about it all within an hour.

Some day I will travel again, probably as an old woman, but with gusto! But that day is not now.

Iris L.

Do you speak French? How would you explain his behaviors and needs? You posted that your DH doesn't believe that you are married to him.

Iris

harshedbuzz

I wouldn't.

Removal from their usual routine and environment typically results in a, generally temporary, progression into the next stage of dementia in terms of skills and behaviors.

HB

annie51

Great advice here about lowering expectations. On the last few trips I took with my DH, I had it in my head that if I had to change plans beige or during, that’s what I would do. I made sure to get travel insurance with “cancel for any reason” just in case. I only had to make minor changes on those trips and didn’t have quite as much fun as we used to have, but I was glad we took them. The biggest issue was his waking up during the night, not knowing where he was and being really confused, but i was able to calm him down or figure out what was really bothering him. Note that incontinence is not an issue with him yet - I think that would affect my decision. Also note that these were not extended trips, longest was a week with the longest flight leg being about 3.5 hours.

M1

I already said on another thread that my instinct would say don’t do it. Again the world would he do if something happened to you? If you do decide to do it I would take a third person and buy travel insurance

LJC43

https://alzconnected.org/discussion/comment/213252#Comment_213252

I don’t know if

housefinch

I would buy travel insurance and, if you do go, I would buy a medical insurance policy for each of you to cover you for medical care in whatever country you visit. I would also seriously consider getting a separate medical evacuation policy for each of you. But truly, if you became incapacitated during the trip, what would happen to your loved one? And truly, is the expense really worth what your loved one will derive from the trip at this point? I have a daughter with a disability who requires “direct line of sight” care. We don’t bring her to Europe on vacation. 1 of us takes our son and the other stays home with our daughter. Different situation, I know, but an example of the hard decision we have had to make.

Joe C.

I traveled quite a bit with DW up through stage early stage 6 and I am so glad that I did. Towards the end I would only travel when we had other family members or friends to travel with incase I needed help. DW always enjoyed traveling and I have some great memories to cherish from those trips.

midge333

My DW is stage 5 and I have decided not to travel anymore. To me, it is just not worth the stress. YMMV.

DTSbuddy

I recommend getting an air tag and attaching it to your LO. My DH carries a wallet all the time and it is in there. If he wanders off, I can track him down using my cell phone.

Our last trip, when he was about stage 4, was to a wedding I could not miss. He did great, until the end and as we drove away, and then he cried and cried and cried and wanted to go back and see everyone again. Not that irrational a response actually. I sympathized. Finally a conversation with a stranger about a lighthouse distracted him and he enjoyed the rest of the trip.

Now, in stage 5, maybe 6, his loss of inhibitions, periods of agitation, and distractibility make outings pretty dicey. Besides, with his memory loss, a replay of a nice walk near home seems plenty for him.

He is transported now listening to Olga Scheps play Beethoven's Piano Concerto #3 . Check it out on utube..

GothicGremlin

I think it really depends on your DH's stage. Is he early? Stage 4 or early stage 5? Is so, then maybe. My s.o. and I took my sister to Italy/Sicily when she was later stage 4-early stage 5. Here's an old travel thread with my comment in it (lots of other good comments there too).

We did it as a cruise so that she'd be able to stay in the same room every night, kind of like creating a mini-routine. If you're staying in several different hotels, then yes, I think that might be too much. Just walking around to different locations was stressful for my sister. She never let me or my s.o. out of her sight.

And — it may have been a vacation for my sister, but it was work for me and my s.o. We did some serious logistics for that trip.

MN Chickadee

Keep in mind a PWD will often lose skills when taken out of their familiar setting, so assume his worst days at home will be the norm on the road. I know of a few PWD who do fine with travel, but they haven't done international just domestic and with extra family members along, so shorter flights and no language/cultural barriers, and they both happen to be the kind of PWD who are very easy going and trusting of their spouse. That's not the norm. For most, the challenges and cons of travel far outweigh the pros, and isn't fun or worth it for them or the caregiver. I'd type out a list of concerns that I would address but honestly it seems too long. I guess think about every caveat you can and make a plan (toileting, behaviors that may upset TSA during the airport/flight, losing him, wandering during the night from your hotel, needing medical care etc.)

JDancer

https://alzconnected.org/discussion/comment/213255#Comment_213255

I could have written your post. My DH is also stage 6 and I share your feelings.

Our last travel was a 9 hour drive to Atlanta for an event I couldn't miss. He had his 1st episode of urinary incontinence on that trip and my caregiving duties increased across the board. No fun. Not doing it again.

AnderK

Last year, April of 2023, we went on a cross Atlantic cruise from Mpls to Tampa to Barcelona. We had planned it for a long time. We had no diagnosis, but about 4 months before I didn't want to go. His incontinence was not being self controlled, he had gotten lost several times driving at home. His mobility sucked and he started the trip refusing wheelchair assistance.

While we had a few some good times, I was always concerned about the whatifs, and the how would Wes.

Well, until I got Covid, and then 3 days later he got covid, so we were pretty much quarantined the rest of the trip. It was almost as though my pre trip worries were premonitions.

I second whoever said get trip insurance. That was a truly saving grace of the trip. I think we only lost a couple thousand on a trip that included last minute air fares back to the states.

We were reimbursed nearly $15 grand.

But my first advice is not go. Listen to your inner self. You are having trepidations about taking an ill spouse on a long arduous trip. Listen to yourself.

Hope I am not too negative. But I have tears in my eyes right now for the decisions you are trying to make. My best to you.

Kathy

Paris20

I very sadly advise not to go. I’m a francophile so I know how much it hurts to cancel those wonderful trips .Have you tried to anticipate all the potential challenges? How will he go to the public rest rooms? Is he incontinent? My husband was incontinent by mid-stage AD. The last trip we took was to visit my family. I took a satchel filled with bedding, diapers,cleaning supplies, and a big garbage bag. Suffice it to say, we needed all of it. Will you be able to follow him everywhere? You won’t be able to leave him alone. Change is anathema to people with dementia. An international trip sounds wonderful but could turn out nightmarish.

terei

Generally, the PWD’s behavior deteriorates when they are taken away from their daily routines. The last overseas trip we were on with six other people had the following complications: one bag lost for 24plus hours, flat tire on the Mercedes van we hired, many miles from a service station, acute altitude sickness that included sky high blood pressure far from an ER, a head injury that required about 20 stitches from hitting the bus ceiling from a big bump in the road, food poisoning, motion sickness from windy roads. You get the picture. This all occurred with 8 people that were all of sound mind + health.

How is your H(or you) going to handle the stresses of even one of those on your trip? It was bad enough as it was.`

If you want to travel, do it with a friend or relative + have DH cared for at home(and I would not tell him where I was going either)

KathyBol

https://alzconnected.org/discussion/69616/travel-with-spouse-in-middle-stage

Thanks to everyone for your insightful replies. I have decided to cancel the trip and stick to day trips around New England and a regular routine at home. I have noticed his worry and concern with minor changes ,occurring more frequently. I can't imagine what busy airports and hotels would incur!

So grateful \for all of you!

Care4Hubs

My husband is probably beyond the mild stage at this point, and I am ready to give up traveling already. I have to pack for him. That isn’t a big issue, but I find that he has put his dirty clothes back in his closet instead of the hamper. So I have to wash all of his clothes before I can pack them. Then he gets confused about what we are doing and when we are leaving to come home. We have not done any traveling out of the country, so I cannot imagine how that would be.