He's taking her to Europe and she's in stage 5
As I am not a caregiver or family member, I'm not really in a position to weigh in on this plan. I'm concerned for them, but the trip means a lot to them, and I can see how--with realistic expectations--it could be worth the effort and potential setbacks. In any case, he's already booked the tickets. But I would like to pass on the most helpful information I can from people who have attempted similar trips. I've already found a lot on these boards, so I guess I'll keep it to a specific question today: If you and your LO made a similar trip somewhere around stage 5, is there anything you wish someone had told you beforehand?
Comments
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My wife and I went to Italy when she was early stage 5. We used a high end tour company, whose support came in very handy several times. It sounds like your friend is bringing support with him, and has local contacts.
The jet lag caused an immediate worsening of my wife’s dementia symptoms. It took a good two days for the jet lag to subside. Since we were on a tour, activities were scheduled starting that first night, and a very full next day and evening. By the end of that second evening, I thought we had made a mistake. We missed the tour of St. Peter’s and half of the Vatican Museum because my wife refused to go on. But that was the worst of it. By the next (3rd) morning, she was fine and ready to go. The key was to stay with her at all times, and take my cues from her. This was her vacation and I was there for her. Of course I had a great time too! I’d say the tip to pass on is that jet lag will hit her harder than him, and that executive function and decision making will suffer, being tired and in a strange place.
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You'll get a lot of suggestions I'm sure--trip insurance comes to mind. FWIW, my neighbor runs a travel business (garden tours) and has attempted three trips this spring, two to Sicily and one to London. On two of the three trips, mutliple participants got stuck at the end of the trips with positive covid tests and were unable to make their scheduled returns. There are currently no testing requirements for going to Europe, but a negative test is required to travel back to the US.0
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Thank you both for sharing your experiences. David, it sounds like a memorable trip--I'm glad you were able to do it. M1, the travel insurance is an excellent tip. My concerns had been centered on their getting there and being there--hadn't thought about not being able to get home!
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I wish someone had warned me about how many PWDs often lose so many abilities and/or functions in a strange or different place.
My DH and I travelled around the world before Alzheimer’s. Travel was what we did.
Our last couple trips, he was maybe early stage 5. He could do a lot for himself at home if it was simple, or with simple direction. I assumed things he could do at home, he’d be able to do in another place. I was very wrong.
Things like get water from the faucet or a snack off the counter, get clothes from the single closet and dress, take a shower —heck, even find the bathroom in a 2-room apt—he could not do any of them, although he could at home.
I could go on and on. Nor could he find his way from our door to the ice maker down the hall, or to the car, maybe 30 feet away but around one corner. If I was out of his sight very long, he got extremely upset (that was totally new then).
If there has been another person to help with supervision and directing 24/7, it would have been much easier. I was beyond exhausted, he was miserable, and trips cut very short.
When we got back home, he was fine, or like he was before the trips.
I’ve often heard since then, expect them to get one stage worse when traveling. Not all do, but many. If I’d known that often happens, I would have been more prepared for it. It just never occurred to me.
Having others along to help would have made a world of difference to me. Not sure about him, he just did not like being away from home although we used to love it.
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TThere is so much I can tell you but I no longer can do it in writing. I am Willing to talk.0
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TSA (USA) has assistance for security for dementia travelers.He should apply for it. They need to stay together through screening.
Some airlines have dementia assistance. He’ll need to check with his specific airline.
He should also check if assistance is available at the Europe airport they are using.
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I traveled to Ireland & Portugal with DW when she was probably stage 5 and to Turks & Caicos when she was in early stage 6. On all trips I had either family or friends traveling with us. Yes there were challenges but I will also be grateful we took these trips while DW was still able to travel.1
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My s.o. and I took my sister to Italy and Sicily when she was early stage 5. It was a bucket list item for her, so we made it happen. I asked a lot of questions of doctors and social workers, my therapist ... I felt pretty prepared -- apprehensive, but prepared.
Things we did --
Travel insurance - yes
We upgraded our coach seats because no way was she going to be able to sit in that seat for 10 hours (we're on the west coast). Upgrading gave us more space, more quiet, and more attention from flight attendants.
The TSA assistance program was huge. I can rant all day about how much I hate the TSA, but in this case, they were fantastic. Peggy hadn't been on a flight since 2001 when she got stuck in Hawaii on 9/11, so airport security was completely mysterious to her. But the TSA agent was great with her.
At the airports, I made sure we had wheelchairs. I told Peggy it wasn't because she couldn't walk, of course she could, it was because an attendant would be able to speed us through the airport. Heathrow can be ridiculous, and I didn't want us navigating it alone with Peggy. It turned out to be a huge bonus - the attendant sped us through, without even moving that fast. Turns out he knew all of the short cuts in the airport. I was impressed.
We did Italy and Sicily as a higher end cruise because I'd been told that keeping a routine would be good for Peggy - sleeping in the same room, same bed, for the week would lower the stress level. This turned out to be true.
We were very careful about which excursions we took, making sure that Peggy would be able to walk up stairs, hills, etc. At the Vatican when we went up and down the stairs, my s.o. would hold one arm, and I was on the other side holding her other arm. We didn't want her to fall.
Peggy had a great time, she still talks about it. There were only one or two meltdowns, which she doesn't remember at all. As for me and my s.o.? It was not a vacation. It was work. Work in pretty places where we'd never been, but still work. When we got home I felt like I needed a vacation. Would I do it again? Absolutely. Just map out every area where something can go wrong (because it will), and then have a plan. Like, it didn't occur to me that Peggy wouldn't know how to use airline seat belts, but I had tipped off the flight attendants that Peggy has Alzheimer's, and they were gentle with her and helped her fasten and unfasten her seat belt.
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I think all of us that are caretakers worry about what our LO can and can't handle, whether it's a vacation, or any gathering.
We recently had to go to a family wedding, and I was very worried about my DH.
Numerous things made the wedding a very pleasant evening
- The wedding was small
- The people that we knew and socialized with was very limited (5 other people!)
- There was no loud music or dancing
- The dinner was sit down....no buffet line!
As with everything, limiting unnecessary stimuli and choices always makes a difference. I believe having their visitors come to them will help greatly. I also think choosing their dining situations carefully will be important.Other than that, it sounds like they're being proactive and hoping to have an enjoyable trip.
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It has been interesting reading about everyone's trips with their loved ones. Everyone is so helpful.
My family have been cruising since the mid 1990s. The last two cruises we went on, before Covid hit, went fairly well, except my DH suddenly could barely walk. Walking to the dining room took him forever. The rest of our family group (son, his GF, daughter, husband, two pre-teens, went on ahead.
The next cruise we took, I made sure we had our foldable wheel chair, from when my DH had a bad foot injury in a car wreck in 2013. That was the last time he ever drove. It was not his fault, but very well could have been. He became lost in an area he lived all of his life.
So, we took the foldable wheel chair and guess what. He walked fine. Alzheimer's is such a strange disease.
We flew again last month to visit my mother and had wheel chair service at both airports. I am recovering from knee replacement surgery in January, so asked for a wheel chair for both of us. Indeed they take us around the lines and back ways I never knew existed. ha
In Omaha, they only had one wheel chair assistant and said they would take us one at a time. I said I could walk if he didn't go too quickly, as I did not want to leave DH alone anywhere at the airport. Omaha is a tiny airport compared to Denver, so I did quite well walking along with them.
My DH asked how we ever found our way around at the airports before. I said, we read the signs.
The best advice is to plan everything out and keep it as un-complicated as you possibly can.
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Double incontinence has put an abrupt ending to any travel for my dear wife and me. There is no way I want to deal with that on an airplane, rental car, hotel room, or restaurant.
Lucky are those that can still consider traveling. For us, that ship has sailed.
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FriendinCalifornia- Travel Insurance, Yes! I made our reservations months in advance, not knowing if her dementia would be worse.
Bill-2001- I see what you did there! Always appreciate a pun!
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The last trip we did was a cruise in 2018 with friends. We spent three days in San Diego after the cruise and flew home. By the time we got home he had no idea he had been on a cruise. He remembers nothing about it today. He had fun in the moment but I decided that we wouldn’t take any more trips and if we did we would have to have support people with us. It was a lot of work and I decided that in the future I will travel but will do it alone or with friends. Thinking back he totally forget what we did the previous day on the cruise. We went to a beautiful private island and swam and the next day he asked if we were going to go to a beach on the cruise.0
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The last significant trip with my DW was in 2018 to South Africa, Zimbabwe and Botswana.
The long flight (15 hours nonstop) was definitely problematic (DW was frightened when the lights on the plane were turned out). Functioning was definitely diminished in terms of ADLs in the unfamiliar environment, especially bathing and dressing. Fortunately, toileting and ambulation were ok.
It was a fantastic trip, and I can’t be sorry we did it, but not only was it challenging, it was clear on our return that DW could no longer be left alone.
YMMV0 -
Friend - bless you for truly being a friend, and seeking some input to support their success on what will likely be the last opportunity for them to do something like this together.
Based on both international and domestic travel experiences with DH, you've received some great tips. I would add 3 things:
- Find a way to secure the door/s (with an extra lock) and/or bring a floor mat alarm if your friend is a heavy sleeper. If there are ground level windows, maybe place a chair or some kind of barrier there. Stage 5 can be weird and traveling brings out new, never seen behaviors. I'm not that sound of a sleeper unless I'm really tired, but DH left the hotel room one night while I slept. We were just really lucky that he took the key holder with him and it had the room # on it so he found his way back. It was a much earlier stage in our AD journey (4, I think) but was still a big shock when I realized the next morning what he had done. He could so easily have walked out of the lobby and ended up in a strange city, strange-acting guy, no phone or ID on him, not good. Leading to the next tip:
- Get the PWD a bracelet or GPS shoes or something that has identifying info, maybe is trackable, and input the ICE (in case of emergency) contact # just in case they are separated. But plan A is don't get separated. Ever. Don't let her out of sight. Which leads to the next point:
- Make sure they actually assign the role of "line of sight" monitor every waking moment. May sound silly but at stage 5 it is wise to coordinate things so someone literally has eyes on her at all times and they all know whose turn it is. Don't leave it up to chance. We lost my DH for maybe 10 minutes after dinner at the ocean's edge...after dark...in a foreign city. The host's 50th bday celebration with many strangers around. DH was right behind me on our short walk up the single file path to the car...and then he wasn't. We reached the parking lot, turned around and he had vanished into thin air. In the dark, right at the ocean's edge. That was one of the longest 10 minutes in my life. Just as the couple we were staying with and I started approaching the panicky stage (hysteria was next) he appeared. He had "gone back to get his sweater". (Note: There was no sweater - it was summertime in a tropical country. All sweaters were back in the U.S). That near miss terrified me. Anything could have happened, including drowning. I never would have forgiven myself.
I think it is wonderful they are traveling while they can and that there will be company to help - especially if they are friends that understand dementia (maybe urge them to read the great Ghent-Fuller "Understanding Dementia" article first just in case). Looking forward to hearing how it goes! It can be done and although your friend may not have quite the R&R vacation he'd like...it should be safe and memorable.0 -
My husband’s first bout with double incontinence happened when we were away from home. Any change in environment sets people with AD back dramatically sometimes. My husband’s confusion and inability to deal with a foreign environment led to the accidents. When we came home, he improved but I vowed never to go anywhere away from hone witty him ever again. I never did. He was probably around late stage five at the time but in his case the effects of travel were not at all good.0
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The more your friend knows about what may need to be done for the girlfriend, the better. For example, perhaps things like packing, selecting daily clothes, always being with her etc. etc. And when it it turns out your friend doesn't need to do some or most of those things, that's great. Early on in our post-diagosis travels I learned this stuff the hard way and wish I'd looked for advice and info before hand.
My approach was to travel til we couldn't. From our experience, for various kinds of travel, there was a trip that completely backfired, and that was the end of that kind of travel. For international travel, we were in South America without an escape plan. My wife had a complete breakdown the first day there, much worse than anything I'd seen before or knew to expect. I knew we had to leave and we did the next day. It was an extremely trying ordeal to arrange overseas connections with a crappy phone plan and while my wife was with me in a state of total panic. But, once flying home, she was very comfortable (maybe because she was very familiar with planes) and thought we were leaving after seeing someone who lived a few hours from our house, though it was a sequence of 20 hours of flying. One lesson--don't expect travel insurance to cover Alzheimer's related symptoms, even completely unexpected, even when you have pre-existing illness coverage, UNLESS AND THEN ONLY MAYBE IF you stick around long enough to find a local doctor who will examine and certify the problem. Yea, right.
Similar thing happened about a year later with national travel to familiar destinations. Panic in the night, wandering the hotel hallway looking for the bathroom, total confusion about where we were and why etc. etc. Just out of the blue. Previous and recent identical trip had gone very well.
But before these traumatic trips we had many great trips, though of course they became gradually more difficult on my part. I would absolutely do it all again, but just wish I'd known how I'd find out it was time to call it quits. My point being that I wish I'd known a meltdown trip would probably come sooner or later, and that that was the price for all the prior great trips.
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First and foremost, I'd like to thank my friend in California for bringing this subject up last year for extended conversation. Just an FYI, the trip to Europe went very well with the help of the few other adults who were with us.
I'm at the point now of deciding my next step. While caring for my SO the realization is that it has taken a toll on my physical, mental and emotional well-being, and I'm not sure how much longer I can continue on this journey. My SO is 58 years old and I am trying to find a space where she might be able to land that is comfortable for her and has adequate care. I've reached out to state agencies (we are in Connecticut) . As I understand there is support for people who qualify. Any advice or comments are appreciated.
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I was trying to figure out why this familiar thread was sent ttt (to the top) and glad to hear from the original poster's friend/traveler! How wonderful that your trip went well! I am with you, my DH and I have taken some nice though infrequent getaways even into late stage by planning and then having very, very flexible travel plans and it has overall gone very well. I am by now pretty well trained to be a minute-by-minute person, (living in the moment on steroids lolol) but it works.
We have said no more than yes, to great travel opportunities that we thought we'd be able to do in our golden years and I don't regret it. Because it has been quality vs quantity. This is only possible due to acceptance of my love's condition, meaning I know I will have to do absolutely everything for two (me and him) so my expectations are WAY lower than what they used to be. He is doing the best he can, and if that means something has to be cancelled at the last minute, so be it. That we will one day try something and realize it's too late -- that the prior time was actually the last time -- well this is one thing I faced and embraced early on. So, I still take very calculated, small risks, with lots of help and backup from people I know I can count on.
So, congratulations for being a great caregiver and also for looking ahead now to consider different living arrangements and possible placement. I have no advice for you there, but others will come along who do. I really wish you well in this next new adventure for you both. That is one way we can look at our dementia lives. Like your international travel with a PWD, identifying options and staying flexible is the way to go. Best of luck to you in the upcoming decisions.
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Commonly Used Abbreviations
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ES = Early Stage
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POA = Power of Attorney
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