Any experiences with travel creating decline once home?

Don't do it. My husband has mild dementia but I notice he get upset if we're out for too long. Yet, he says he's a prisoner in his house because he doesn't drive anymore. It can be a conundrum for sure.

Don’t do it. Routine is vital for people with dementia/Alzheimer’s.

When my grandma-in-law was in assisted living, my mom-in-law would take her out to lunch often. Before long it became a detriment. Grandma became worried that “the hotel” would not let them back inside. She couldn’t remember where her bathroom was. Took clothes out of her drawers since she was ‘unpacking’. It was all too disorienting and stressful for her. And that was just from an afternoon outing!

Keep in mind they no longer process time normally. What was three hours to us, was three weeks to grandma. I can’t imagine how a six-day trip would have affected her! It would have been disastrous for her AND us.

Apologies if I’m wrong here… but it sounds like you’re wanting one last hurrah, one last vacation to relive the ‘good old days’ when your husband was well. Unfortunately, he is past that point. This trip can end up harming him and breaking your heart even more.

You are very wise to be considering this . Please do yourself and husband a favor and, speak with his PCP about these travel pros and cons with a dementia patient. You could find yourself and husband in very unsafe situations during the travel, far worse than when you return. Dementia patients do not do well with changes in schedule, environments, people ( especially sensitive to large numbers of people around). ....... I would suggest that if at all possible you find a good place of respite care for your husband , place him in respite care and, YOU go on the trip( this is much safer all the way around and plus, will give you a much needed mini vacation for your own self care)..

I think it would be okay as long as his mood is stable and he is able to walk. You would have to help him with most everything and make sure that he doesn’t get lost. Sometimes traveling with dementia patient who has not gone full blown yet can have an enjoyable time. All the activity around them helps keep them focused on something. They may not remember, so take pictures.
On the not so good side, a woman on this forum wrote in sharing her experience with taking her Mom back to France-Mom’s home country. The six week trip was a total nightmare. Her Mom didn’t remember or recognize anything. She cried all the time and said that she wanted to go home. It was way too stressful. Only you know the degree of your husband’s dementia. Good luck with everything! I hope that he is well enough to go.

My opinion is that the potential disruption after travelling far away, would be no different than if you visited a nearby city.

Does your husband get combative or belligerent if someone tries to get him to do something that he doesn't think is necessary or does he comply with a bit of grumbling? What is your fear of travelling with him on a plane? Is it the wait at the airport or the TSA or the length of time of the flight? Could the fear really be yours knowing that you will have to responsible for everything?

I travelled with my Mom to Greenland and Iceland via cruise ship when she was 97. She already had mild dementia, however, I didn't know it. I just thought it was age related forgetfulness. She sometimes got lost on the cruise ship, however, that is easy to do. She couldn't remember the times for the meals, but she certainly remembered the menu for the day. When she went on excursions, I was always with her so there was not a chance she would get lost or go in the wrong direction.

She handled travel well.

How about if you take an overnight trip somewhere and see how it goes?

Here is an excerpt from my book, Dementia Care Companion

Travel

"Right away, she lost her passport and wasn’t even concerned about it. While on the trip, wherever we went, she thought she had already been there. She thought she knew people she had never met and would start conversations with strangers. She didn’t remember if she had had lunch, or whether it was day or night."


Traveling is still possible in the early and middle stages of dementia progression, but with proper planning and lots of precautions. Whether it is advisable to travel is a question that requires careful weighing of the benefits against the risks involved.
Traveling is stressful for a person with dementia, and their reaction to the added stress can be unpredictable. The changes in their daily routine, the unfamiliar environment, and the pace of activities all add to the confusion, anxiety, and aggression that the patient experiences in the best of times.

Plan for Travel
·      If possible, travel with a trusted person who can assist you during unexpected events or situations. Expect that the patient’s behavior will be much more problematic while traveling than on a regular day at home.
·      Make a list of everything that you will need ahead of time so you don’t forget anything important. Take extra clothing for cold or warm weather. Pack ample incontinence supplies, wet wipes, snacks, and drinks. Include slippers and neck pillow for additional comfort. Provision for the patient’s entertainment on the way, including music, storybooks, photo albums, and so on.
·      Take along medications, medication list, dosage and time instructions, your doctor’s phone number, and other essential and emergency phone numbers.
·      If you plan to fly, ask your doctor to write a letter indicating the patient’s type of illness and their special needs, and requesting help and cooperation, especially from airport security staff and flight crew.
·      Think through possible incontinence scenarios, such as in the departure area or on the plane. How would you deal with them should they arise?

While on a Trip
·      Do not pack too much into a day. Plan more time than usual for every activity. Allow plenty of time to rest and recharge between activities.
·      Try to make the patient’s daily schedule during the trip resemble their regular schedule at home as much as possible.
·      Prepare for the possibility of wandering. The patient may get disoriented in unfamiliar environments, wander off, and get lost. Stay with the patient at all times, and do not let them out of your sight.
·      Be ready to pick up and return home on short notice. Your trip may need to be shortened unexpectedly due to unforeseen circumstances.
When Visiting Family and Friends
Although the patient may not remember the names of friends and relatives, they will enjoy seeing familiar and friendly faces. When planning to visit friends and relatives, alert your hosts about the patient’s special needs ahead of time so your hosts can better accommodate the patient during their visit.
·      Stay calm in the event of mishaps. Treat the patient with respect at all times.
·      Do not address the patient like you would a child. Avoid baby talk and any other speech or behavior that could be demeaning to the patient.
·      Do not discuss the patient’s illness or behavior in front of them.
·      Ask friends and relatives to stay in the patient’s field of view. Have them approach gently, smile and make eye contact, introduce themselves, and call the patient by name to draw their attention.
·      Ask everyone to respect the patient’s personal space and not get too close unless invited to do so by the patient.
·      Encourage people to use hand and face gestures when interacting with the patient for better communication.
·      Make certain that your host does not offer any food or snacks to the patient before consulting with you.
·      Use a photo album or a puzzle

Based on my experience, I wouldn't travel. I brought my mom up to my condo so she could see the area (she couldn't remember being there, and I was trying to convince her to move to IL or AL near me). I had no idea what I was in for. The 2nd night she was here, she became delusional and was hallucinating. She physically attacked me while I was sleeping in order to wake me up and demand to go home - didn't even recognize who I was or where she was. Based on some stories I've heard, I was lucky she didn't have a kitchen knife or anything when she did this. It was the most frightening experience of my life. The next day I called a couple of the memory cares I had toured earlier in the summer and got her placed. It was the worst week ever. I wouldn't want anyone to go through that.

From my own experience with a husband who was in early stages of Alzheimers which I didn't recognize, just thought he was joking sometimes, also thought he was just fine, I learned the hard way on a cruise ( you know$$$$), and my first thought was what if he walks off the ship while I am out touring, and I never find him and the ship has to sail. We'd both be miserable. I was on a cruise with him and left him in the cabin 'cause he slept most of the day. Yes, he did sleep, but also got up and walked around the ship and told me what he did. What if he walked off the ship and didn't know his way back to the ship? Never again!!! Back at home he showed great signs of decline and I took care of him until he was no longer safe to stay at home. I wouldn't do this again, ie., let him stay on the ship while I toured. Bad idea. Use the insurance you bought for the cruise, to cancel due to medical reasons. I did that with a trip we put a down payment on to New Zealand. Got just about all money back. Don't take chances.

compass19: An individual with dementia requires routine. The proposed trip (on an airplane, no less) would be anything but. It would also be very difficult for his DW (Dear Wife), you.

As you'll see from responses, everyone is different; tolerances to change will likely be different, as well. 6 days is a lot - I'd recommend cutting it down to 3-4 days, if you're able, to just test him out and see how he reacts to different stimuli. My dad is solidly mid-stage; he did great for a week in Mazatlan and Cancun, but didn't do so well visiting my son (his grandson) and family. As much as he loves kids, I think the constant activity of toddlers sent him over the edge. There was a night that he didn't even know who I was because the day had been overwhelming.

I think most important is that he has a quiet place to retreat if activities become too overwhelming. Dad does great when we visit my husband's family up north, but we always get a hotel and when he starts to slip (mentally), we excuse ourselves for some quiet and reprieve. If the full 6 days is a must, maybe consider a Plan B if he becomes overwhelmed.

Dad always "snapped back" when having too many people in the house or being in a new surrounding - even when we visited my son in another state.

I hope this helps.

My husband only has mild-moderate dementia. Along with what may be worse when you return, you need to consider the multiple environments you will need to maneuver through. Whenever I am considering anything outside of our home, even local, I consider the consequences that "I" would have to pay for the experiences.

Will there be a family bathroom, or will one of our sons be along or other capable man be available to help him otherwise?

Will there be laundry facilities available in case of more than usual incontinence issues?

What extra effort will it take to be sure he has proper nutrition... if special food, products or special utensils need to be brought along?

Will there be anyone trustworthy to help supervise to prevent him from wandering off... even to go find the bathroom without me realizing it? Everyone says they will watch him, but then often are distracted.

Will we be in situations with large crowds that may be overwhelming... as well as possible exposure to FLU, COVID, RSV, etc. The worse case scenario... medical care or hospitalization, even for every day chronic issues.... especially if we are too far from home to return to our providers.

Will we have a schedule we will need to follow... what if we are late. Will I end up missing the activities that was the purpose of the trip?

These are just a few of the concerns for me in a normal day that when they occur at home, do not stress me... but away from home is a different story. So, the bottom line is how much will I get out of an event if he accompanies me as well as the issues that may cause him unnecessary stress. I have found when he is along, a simple conversation with someone else can be next to impossible.

You know his overall abilities and the concerns you have for him just at home so visualize how they could be magnified in an unfamiliar environment.

One experience I can share is several years ago we traveled on a plane. The bulkhead seats are not always available. I didn't even consider the consequences until we were about to get seated. With the small amount of space, I realized he would have trouble maneuvering into the window seat. I then realized if he took the aisle seat, I would have trouble helping him out if I were behind him, especially if we were in an emergency situation.

Yes, some things are well worth the inconveniences and set backs. Only you can answer this.

my husband is three years since diagnosis. He is in the beginnings of the moderate stage. I have decided that if I do travel with him, we only go to familiar places with very familiar family or friends. It’s nice to have the support of others around me to keep him entertained and engaged and to help keep an eye on him. But I also find that when we return, we have added stress trying to get back into our routine, which is very predictable and structured each week. I’m not sure who has the harder time, him or me, but each time we go, I say this may be one of the last trips we take(which makes me very sad). I have considered taking him on other trips to places we once wanted to visit but I know in my heart it would not be worth the cost, the added stress, and the anxiety experienced when we return home.

I just got back from visiting relatives out of town. It was a short trip and my husband with Lewey Body Dementia seemed to enjoy it. Unfortunately he had "accidents" much more frequently and still continues to have them since we've been home. He went from very occasional incontinence to wearing "briefs" continually with protectors on his chair, bed, anywhere he sits..

My mom is always confused and somewhat agitated when I take her out of her routine. It's like she is trying to process everything and mentally can't and her brain is on overload. As their disease progresses, their worlds get smaller for a reason...that is what they can handle.

I do not recommend traveling with him. It more than likely won't be pleasant for either of you.

I suppose each person is different. We traveled for several years after my wife was diagnosed with Alzheimer's without many problems and she seemed to enjoy the trips. But as the disease progressed so did the problems. At home she is not prone to wandering but there were occasional times I had to track here down when we traveled. Just this last year I have decided to stop going away except for fairly short drives; I find it too stressful and it no longer seems like she enjoys it either. .

I would say it would depend. Is your husband easy or difficult.

I travel with my father and confusion and forgetfulness are predominant. Otherwise happy go lucky. We visit places he has been before so can constantly relate things. Upon ‘re entry’ there is often 2-3 days of getting back to normal.

i am at the point where we have taken our last trip (I believe). The prep and tax on me is not worth the squeeze. It’s turned into traveling with a 2 yo. Prep a bag, the things he feels he needs, extra depends, etc. it’s great to provide the change, break or experience but it’s come to an end. You know it when you reach it and you won’t know it unless you do it.

also consider safety in your arrangements. I had to beg Marriot to give me adjoining rooms once and my dad still got out of the room at 2am to wonder where he was. The desk had been forwarded and were great when we ran out in pjs after him.

good luck.

I did this with my husband about 6 months before I placed him in MC. It was not a good idea. He was much more disoriented being in a strange place. He wandered off from the hotel room. I thought he was in the bathroom and never heard him go out the door! It was very scary! I finally found him wandering around the parking lot. This could have been disastrous. Obviously, I decided there would be no more trips after that.

It sounds like YOU need a vacation. Hire a caregiver for a week? Any friends or relatives around who could stay with him? You need a break.

Don't do it. Not only will he be confused and rattled during the trip, he likely won't bounce back because he'll forget his routine and won't get it back.

This will make it harder on you than even on him.

I wouldn’t do it. If he doesn’t understand what’s going on, can’t connect the dots, doesn’t know who people are, where he is, etc., what will you do? Explaining won’t get you anywhere, he may exhibit some behavior you can’t control, and when you get home, you could have serious problems with readjustment.

You’re better off setting up Zoom or FaceTime. Try it!

He may not only be worse when he is home, but he may be worse on the trip. It isn't something I would do, but if you choose to the more likely screnario is that he will be upset during the trip and once again OK at home. This is something you cannot predict, really.