Question for those who have flown with their LO

SweetiePie

Hi.  I am considering flying with my DH to visit family and friends.  My biggest concern is bathroom use during the flight. DH is not incontinent but sometimes gets confused about toilet use away from home.  Would appreciate input from those who have flown with their LO at a similar stage.  I could possibly squeeze in there with him (I am pretty petite).  It's a five hour flight.

dayn2nite2

If you're worried about the bathroom, I wouldn't do it.  I would put him in respite at a local facility or have someone stay with him and I would go alone.

How would you handle the worst-case scenario, where he is incontinent of feces, and the resultant need to get him changed, cleaning him and the bathroom, and the smell that will probably result (which other passengers will have to endure)?

How will you ensure that the soiled clothing odor won't bother others?  You won't be able to clean the clothes enough on the plane to stop it.

Rescue mom

I flew a shorter flight with my DH who sounds like yours. I would never do it again. He was much, much worse on the plane than ever before. The rushing around, the lines, the crowds, not-nice security, assigned seating, etc, made him much much more confused, and upset than he ever gets at home or friends. He was upset before we sat down, and the bathroom was a nightmare.

He could not deal with the airplane bathroom,even though he could at home and at family visit. But sometimes he did have issues in family’s “different” bathrooms, but on the plane he did not even recognize the toilet. And no privacy for me to help him, and help clean up.

I will never take him on a plane again—maybe if I had others to help with him,  that would help. I think some here had more success with extra helpers traveling with  them. Others said never again.

At least, be prepared for worst-case. I wish I had known beforehand that they can “lose” so much abilities, so fast, in an unfamiliar place. My biggest problem was that I assumed he could do/act on the plane what he did at home, and I was very wrong about that.

I wish I had other tips for you. Frankly, what worries me most these days is how ugly other passengers are. Usually in normal surroundings, people will help when they know you have an Alzheimer’s patient. But on a plane now,  I don’t know about that.

jfkoc

Sorry, I have to agree to not do it. I will add that being away from home me be difficult for your husband also.

SweetiePie

Thanks for the input.  We were scheduled to go last year, just as Covid first hit.  Now it seems the window for travel has closed.  Had really wanted to make a final trip together.

MN Chickadee

I wouldn't do it personally, but if you decide to go ahead you might assume you will have to spend more money. Shell out for first class so he has more space and a more attentive flight attendant and often a bathroom assigned to just that group. You might buy a ticket (even if they don't sit with you in first class) for a family member to be an extra set of hands in the airport and the boarding process. I'd try to time it for midday so hopefully he has had a bowel movement before but before evening when sundowning can occur when they are stressed. And put him in Depends for the flight to help with any accidents. 

I would echo the others to think about how it will go for him and whether it is worth it to put him through it. I don't know what stage he is at, so you'll have to weigh how much he might get out of it with the risks. However he behaves on his worst day, assume that could be his base line the entire trip. Once you get to your destination it will be more bathroom struggles in a new place, and being out of his routine and normal scenery could really affect his cognitive abilities. You might find it more rewarding in the long run to get respite care for him and go alone. Or ask the loved ones to travel to you to see them but keep him in his own surroundings. I know it's not what you want to hear. The dementia and COVID may have taken away this dream of one last trip and it's terrible, I feel for you. 

Stuck in the middle

Sorry, SweetiePie.  I hate it that I won't be taking any more trips with my wife, too.  She doesn't even want to do day trips by car, much less a long trip.

SweetiePie

Thanks Chickadee and Stuck.  The sad thing is that DH wants to go and I think would do fine once we get there.  It's the getting there that's the rub.

ButterflyWings

Lots to say on this! I flew with my DH internationally in Stage 4. The flight was not a problem, with movies and food to keep him occupied. Airport dynamics, were tough. Here are some reflections:

• PWDs don't rush well. We missed a few flights due to his slowing down when I needed us to hustle on to the gate! 
• We lost track of things going through security AND through customs. I say put key things in 1 bag that you can really keep an eye on. And guard it with your life. Clothes, belts, etc. can be easily replaced. Cell phone, wallet, keys, your only cash, IDs, not so much.
• While you're at it. supervise the packing to minimize unnecessary "stuff" that will cause delays and maybe even stop you for an open bag check in security. DH stashed water bottles and metal stuff like a butter knife (why?) after I packed. Watch him.
• Depends were not in our repertoire back then, but are a great option! Adult wipes too.
• Snacks that can go through security in your carry-on bag or jacket pocket, like granola bars, dried fruit, etc.
• Use family bathrooms before getting on the plane. I nearly lost DH a couple of times with men's rooms that had one entrance and a separate exit. Didn't see him come out & he was following the crowd onto a people mover heading the wrong direction.
• Recently read on these boards that you can get TSA transport. That is safest. Hindsight.
• We had a terrible experience in Brussels with a an airline staffer/customs manager that insisted on separating us for the Q&A as they examined our passports. I refused to go into a different line, and handed him a card indicating AD - he told me to step away or we'd be taken to a different area and not allowed to make our connection at all. We almost missed it, and a 2 week "last time" trip to visit friends abroad. The guy was a jerk. Very hostile and baiting my DH who started to take offense at his condescending attitude and confusing questions like 'quote the 3rd amendment to the constitution'. Seriously. (What? Why?) Dude was an a*hole with the power to strand us halfway across the world. Luckily I got the attention of a young woman supervisor who intervened and took both of us aside, quickly cleared us to board and we were on our way.  But I was traumatized.
• Last thing, I was exhausted in hotel on an early trip and we turned in for the night. Next morning I awoke to evidence DH had obviously left the room unbeknownst to me. Took the elevator down and picked up brochures from the lobby I guess. He was obsessive about taking the key in its numbered holder, so that he found the room again. Said he went to buy a soda but then didn't have any money (didn't think about that beforehand). Really scared me, realizing how easily he could have exited the hotel and been lost for good. No ID on him in a strange city, acting strange...recipe for disaster.
• If you will be in a hotel, maybe get him an ID bracelet in case wandering occurs, and definitely secure the door somehow. Even an alarm mat to wake you if he gets up?

Alas, that ship has sailed for us. There will be no more flights and not many more road trips. He doesn't always know who I am and is disagreeable + resistant to the point one of us might get arrested lol.  Even staying at home requires Seroquel, Sertraline (for depression/anxiety), and the occasional melatonin drops in his water or juice to help slow him down +promote sound sleep at night with 10mg prescribed by his Dr. And that's in a familiar, boring place like home.

However, depending on the stage and cooperation level of your DH, I won't say don't try it.

• Just give yourself LOTS of extra time if you do. 
• Does he like music? If he will wear ear buds, that may be helpful in just following you through airport crowds. Also to calm down or just pass the time in flight. 
• You know your LO best. 
• Do the family and friends you are visiting know his diagnosis and what it means?
• Share these links with them https://tamcummings.com/stages-of-dementia/
  https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/ And a GREAT one:
•  http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
• If you're willing to possibly have to cancel the trip at the gate, soon after arrival, or otherwise end it early...maybe its worth the try, just to see.

 

But be prepared for all the things others have said. It could go ok. If so, it will probably really disorient him for quite a while, even in the best case. And after you get there, you still have to get back! Is there anyone who could fly with you, so you can just concentrate on DH and they can handle the navigating, bags, food, etc. etc.?

Good luck, whatever you decide. Our "last hurrah" was super exhausting for me and we had some frightening near misses in transit and on the ground, (He disappeared 1x for 5 minutes and we were at the ocean's edge after dark (!!!) walking to the parking lot after dinner and he was right behind me. Until he wasn't. We launched a search and it was a terrifying few minutes. Later learned he had gone back to the water's edge alone, to get his (non-existent) sweater (it was 70 degrees late at night). But he could easily have ended up in the crashing surf just walking the wrong way after dark. By accident, or on purpose as he was still pre-anosognosia then, so very aware of the diagnosis at times and wrestling with having been forced to retire immediately, etc. I tell you, the terrifying thoughts that crossed me and our friends' minds until he turned up. Whew! But otherwise, with lots of good fortune, the help of friends and angels, and me being on super alert, we made it through the entire trip and I will say I am so glad we took the long dreamt of, trip, even though it was vastly different because he already had changed a lot. 

And of course he forgot it all by the time we returned. So the memories were really only for me and the good friends we had been promising to visit for a long time. The memories are mostly good, but bittersweet.  I would do it again at stage 4, but not with how my DH was by stage 5. Just not worth it. Not only stressful for both of us, but actually dangerous at points. I had not realized that possibility at all. 

And I would not have gone without him then. But I might in the near future once the variants are less of a threat and I can identify respite options. Stage 6d* is where we are right now (*updated from 6c after re-reading the links above!).  Incontinence, hallucinations, delusions, refusal to do anything on time, period. If at all! lol. But I heard on first joining this forum to travel if you want, while you can. Because the window of opportunity will close sooner than later due to this progressive disease. So...if you can go, go. But have the lowest expectations, plan for the worst, and hope for the best. I guess that's what we do every day.

MN Chickadee

For anyone reading along considering travel, I wanted to share that Amazon carries door alarms that would work in hotel rooms. They are doorstop wedges with an alarm. A little $10 wedge would make it a lot easier to sleep knowing your LO can't leave without you knowing!

Paris20

Count me in for yet another voice suggesting you not take DH on a plane trip. I recently returned from a family trip…5 hours in the car. We had hired a driver, who was able to take my husband to the bathroom at the rest stop. At our destination my husband was confused. I was up half the night for almost a week, guiding him to and from the bathroom. He knew where it had been during past visits, even last year, but he could no longer remember. He had two “toilet”accidents but since I came prepared for anything and everything no harm was done.

My point is that we cannot predict exactly what a person with Alzheimer’s will do in a new environment…not just the flight and the airport but also what happens at your destination. Being at home is far easier to navigate than a visit to a destination that might have been well known in the past few years. That familiarity can disappear. I vowed never to travel with my husband again. We had many fantastic trips but those days are gone. 

GothicGremlin

Hi SweetiePie -- what stage is your DH?  I'm sorry if you posted it, I just didn't see it.

My s.o. and I flew internationally with my sister, who was probably very early stage 5 at the time (summer, 2019).  She really, really wanted to go to Sicily, a definite bucket list item for her.  Since she hadn't flown at all since the 9/11 attacks, I knew that if she was willing to get on a plane, it was important to her.  So we did it.

From her perspective the trip was a smashing success. For me, after that trip was done, I needed a vacation.

That said, I planned that trip down to the last detail. We flew using miles, so we were in first class, so my sister always had quick access to a bathroom. She wasn't incontinent back then, so it wasn't really an issue, but we were really careful. We lucked out with great flight attendants (both coming and going), who were familiar with dementia, and so were really helpful and attentive to my sister.  I appreciated that more than I can say.

I did all of my sister's packing - and I only fly carry-on, always, even to Europe. This trip was no different.  I got her stuff into one carry-on bag, plus her one "personal item", so there just wasn't a lot of random stuff floating around waiting to be lost. I also held onto all travel documents so I knew where everything was at all times (yes, I'm a little control freaky   )

I called TSA and arranged special security (turns out you can do that) - I submitted all of the info about our itineraries, and so we all essentially went through pre-check style screening. I was able to guide her through the metal detector, while the TSA guy hovered nearby. My s.o. and I handled everything with customs, and it wasn't a problem (although again, we got lucky).

In the airports, I had arranged wheelchairs - I just wasn't sure she was going to be able to transit through Heathrow (or anywhere else), and she really wasn't able to, so the wheelchair was a good move.

Honestly, it was exhausting for me and my s.o. But to this very day she talks about the trip and how glad she is that we got to go.  It makes all of that stress worthwhile. If I had it to do over again, I would.

Now, she's in stage 6,  mid-to-late, and I don't take her any distance at all. Her doctor is about 7 min away, and that's about as far as I'll go with her. It's just too traumatic for her.

So I guess what I'm saying is that it can work, but there is a lot of up front work do to, and it's going to be stressful, and probably not the vacation you envision.  I don't disagree with anything that anyone has said previously.

NylaBlue

SweetiePie, I know exactly where you. I have to add my strong agreement to those who have replied, “please, don’t risk it”. Three years ago I made plans for my husband and me to fly from WA to NC to visit his family. DH used to fly all over the world in his job, but after talking to him intensively over the week before the fight, I cancelled the non refundable tickets. He just couldn’t understand that once he got on the plane, he couldn’t get up and go to the bathroom at will, nor could he use his portable urinal while seated in the passenger cabin. 

Nonetheless, this visit with his family was very important to all of us (a “last visit” because of his condition and other relative’s illnesses), so I drove us from WA to NC and back. I never second guessed or regretted cancelling those tickets. Managing his overactive bladder was difficult enough on the drive; it would have been a nightmare by plane. Don’t misunderstand, I’m NOT advocating for car travel with a PWD!  PWDs capabilities can change so suddenly. Listen to your doubts and don’t risk it.

LicketyGlitz

Sweetie Pie, we took Mom on a cruise for Mother's Day when she was mid-stages and had to fly to the departure point, about 3 hours. I have three letters for you...

T S A!

They were awesome! I contacted every airport we had to pass through prior to the trip and even LAX was an absolute breeze for us because of the easy escort who met us at Security. Also, at the gate we would inform the flight crew that we needed to be in the priority seating group for the disabled (I don't like that word but I can't think of another), and that too made it much easier.

It was a tough trip, there wasn't enough for Mom to do on the cruise ship, and at one point she left our cabin and miraculously found her way back without us knowing until she came back in - I think it's Chickadee who mentioned the door stopper alarm - would have been a handy tool I didn't know about!

But, I am so glad we did it. The memories are absolutely priceless. Butterfly has got a great list of tips in their post to give you a headstart on planning. If you guys do it be ready for crazy challenges and frustration, and have a blast in between them.

bananabys

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jfkoc

Additionally do not assume that you are going non-stop to your destination. I have more that one family member who have run into problems recently.

One was through security and ready to board and the flight was cancelled

One was flying non-stop to LA and ended  up in San Jose.

SweetiePie

Wow.  Thanks for all the detailed replies.  Sorry for late response but I usually hang out on the spouse/partner forum.

DH is mostly stage 5, moving towards stage 6.  Diagnosis was in 2016.  We travelled internationally in 2018 and 2019 with no real problems.  Our last domestic trip was in October 2019.  This is the same 5-hour flight we would take this time.  The big change since 2019 is the sometime confusion around toiletting.  I would need to be in there with him to supervise, which is not easy on a plane (are first classs toilets any bigger??).  He is not incontinent but could have an accident (#1) if he can't get to a bathroom in time.  I would have to watch him like a hawk at the airport as he can no longer be counted on to "wait here until I come back."   We would stay with friends and family.  All are aware of his diagnosis.

I have pretty much decided not to make the trip.  The flight could be fine or it could be a disaster.  I don't want to have to deal with disaster.  But, I feel guilty not to take him because he talks about wanting to see people.  His son will visit us if we don't go and our friends have a one-day cruise stop here in December so that is something to look forward to.  I doubt his brothers will come to see him.  We have always been the ones to do the travelling.

Thanks again for all the great input.