extended travel?

M5M

We are considering a longer trip this summer that would be an international cruise.  We are experienced travelers, but I wonder about disease progression.  Right now, DH is somewhere in mild-moderate area...he doesnt drive but is physically capable of all daily activities, dressing, etc.  He has trouble with his pills and loses words, but a casual observer wouldnt think much except he is "an old geezer"..... Intense conversations dont go so well. I've noticed posts where PWD progress much quicker than is expected, with some real difficulties.  Any experiences you might share, or concerns?

Arrowhead

My wife and I took a two week, Celtic vacation when she was at about that stage. For the most part it went well, but if we weren’t in the hotel room or on the bus, I couldn’t get too far from her. I had to make sure that we were never separated because at times she was not sure where we were or what we were doing. I lost her once and, even though I found her, it still scared me for a while. This may be the last time that you’ll be able to make a trip like this. By the next year, most travel with my wife was impossible. I suggest you stay close to him at all times. Realize that symptoms can change at any time so be extra watchful for that.

Iris L.

You might consider a specialized cruise for PWDs and caregivers.  Also, read some of the travel and vacation threads.

Iris

Gig Harbor

Are you going with family or friends? Who would watch him if you were to get injured or sick? A friend of mine tripped going out of a church on a tour and had to be admitted to the hospital. Her husband took care of everything but if he had had dementia they would have been in trouble. If your husband seems normal people would expect him to be. Even if you have travel insurance there would not be anyone immediately available to you.

Vitruvius

On the last trip we took, my DW was probably a bit farther along than your LO and it did not go so well. We had taken trips as recently as a few months prior and they went fine. But in the intervening few months my DW had apparently declined enough that we had issues. The trip was a car trip with our daughter's family (separate cars) to a national park 7 hours away. For the first 3 days DW was mostly OK but a increasingly a bit "troubled", probably by being out of routine. But on the fourth day she became very bothered and desperately wanted to go home. We left the next morning by ourselves.

That's the problem with something like a cruise, you're locked in for the duration.  As I said, my DW was probably farther along, but it is very hard to assess exactly where your LO is on the dementia spectrum. I think I constantly underestimated DW's regression and only understood where she was in hindsight. 

Bob in LW

I think that one thing to consider is that any type of travel will disrupt his daily routine, and he may be more confused than usual.

MaryG123

If you buy insurance for the trip, you could cancel if he’s progressed by then.  Could you take a “test” trip before then to see how it goes?

Ed1937

Some dementias are more prone to plateaus and steep drops. They may also be prone to delusions and/or hallucinations. If he were to experience any of those, you might be stuck for quite a while on a cruise ship. I understand that he's in reasonably good shape now, but it's something to consider. While you should get in all the "fun" you can while you can, you should consider all the pros and cons while making your decision. If you go, I hope you both have a wonderful trip. I am not trying to talk you out of going.

Some people progress quicker than expected, while others may take what seems like forever to progress. You just don't know. Progression is typically slow.

GothicGremlin

My s.o. and I took my sister on an international cruise when she was maybe earliest stage 5, maybe late stage 4 - so probably about where your DH is now.  Back then Peggy could do all of her ADLs with no problem.  The trip to Sicily/Italy was a bucket list item for her, so we logistic'd the living daylights out of that trip to minimize problems. Still, I remember being apprehensive.

In the end, everything went well, but that was no vacation for me and my s.o.! Peggy remembers it as a perfect vacation (of course).    She only remembers the good times now, and she has forgotten about the couple of meltdowns she had.  Personally, in spite of all the work, I'm really glad we made it happen for her.  If I had to do it all over again, I would.

I know I had a thread about it, probably in the caregiver's forum (not this one), I think in 2019.

Highlights:

- I made appointments with TSA on the flights - Peggy needed an easy way to go through security, and it all ended up being pretty painless.

- I made sure to have wheelchairs available, both in the Rome airport and Heathrow in London.  That was a lifesaver, for sure.

- We upgraded the seats on our flights so that Peggy wouldn't have to deal with so many people in coach (thankfully we had bazillions of frequent flyer miles).

- Travel insurance

- We chose a cruise so that Peggy would have an easier time making a mini-routine. She was in the same room every night, we had breakfast in the same place every day, etc.

JJ401

I last traveled with DH in the fall of 2021. It went ok, with a few minor hiccups, but fear now they would not be mild.

In one hotel we were three doors from the ice machine. He went alone and did not return. I had to search for him. Turned out that the ice machine room served two corridors and he was wandering the other one. 

We flew on the trip. Airport restrooms with more than one entrance/exit were difficult. I was always afraid he would go out another exit.

At airport security I was randomly selected for further screening and we got separated briefly. He just stood by the carry on luggage belt not remembering what to do. TSA has available assistance through security, use it. I wished I had.

I don't think we will be traveling again, but if we do, we won't go by ourselves. 

It won't be the same as a trip a few years ago, but it can be a good trip if you adjust your expectations to his ability level. Traveling will be disorienting for him. Don't assume that if he can do it at home, he can do it on the trip. Think of it like traveling with a toddler. He'll need to be accompanied constantly. If you would not send your two year old alone, he can't go alone.

Adding- a previous poster suggested trip insurance. Be sure to buy it so that it covers preexisting conditions. Most have a short window after booking for a preexisting condition to be covered. Also note how much a we changed our mind policy covers. Often it is not all.

Also-- you said international trip. Many insurances (Medicare) do not cover overseas. You want to look into your medical insurance and consider a policy that has medical evacuation to home included.

Joe C.

We traveled a fair amount in the US, Europe & Caribbean when DW was in mid stage up to about until early stage 6. In late stage 4 to early stage 5 it was sometimes just the 2 of us but by mid stage 5 we were always with friends or family members. The main concerns were what if DW wander away while I was temporarily distracted, how to handle restrooms & what if something happened to me while traveling. I never ran into any major problems but in that regard I was fortunate. I am glad we had the opportunity to take all these vacation together but you can’t do it with rose colored glasses.

Some thoughts:

1. Make sure you have some means of tracking your LOs location incase you get separated.

2. Definitely contact TSA Cares program if airline travel is involved.

3. Ask friends or family members if they they would like to go on the trip. If necessary & you have the financial means even consider paying for a family members trip if they accompany you.

3. Have emergency contact information in your wallet & on your phone. 

4. Medical alert bracelet for both you & your wife identifying you as a caregiver & her a a PWD.  

5. Trip insurance with medical evacuations coverage & possibly Cancel For Any Reason coverage incase there is a change in conditions prior to the trip.

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tgeno

Pre-Covid and before DW's recent diagnosis of early stage AZ, we loved to do river cruises in Europe and a couple of ocean cruises. We recently took the leap and booked another river cruise in Europe for May of 2024. Currently, DW is high functioning and we have no idea how she will progress (regress) between now and the cruise. A relative who is a hospice nurse and helped care for our mother until she succumbed to AZ advised us to "just do it". We don't know how much time we have before such trips are impossible, but we have decided to take every opportunity to travel. River ships are small (usually less than 200 passengers) so we won't be stressed by crowds, and we always buy travel insurance, so we can cancel with a full refund if necessary.

M5M

Oh, my gosh, a huge Thank You to everyone who chimed in.  I picked up some new thought for sure, and am mulling over both the pros and cons.  We are experienced travelers, I do all the logistics and decisions.  He loves the idea of another trip.  He recognizes this may be our last big outing.  We are discussing the possibility that something could happen to one of us...he would have a hard time maneuvering on his own. I am with him nearly always as it is, that would be a problem for sure.  We do have travel insurance and I was thinking of adding the cancel for any reason.  I had not thought of the Medic Alert Bracelet, and did not know of TSA Cares.  

Decision in progress!

Ed1937

If you go, just make sure you have a plan in case something happened to you. How would someone handle his needs?

Gig Harbor

I am just repeating what I said earlier. The last time we took a cruise we stopped in Puerta Vallarta. As the final boarding was happening the medics showed up to take a lady off the ship and obviously she was not looking pleased. She was going to miss the rest of the cruise and would have to fly home from there. I have no idea what I would have done if that had been me and my husband and I were traveling alone. He would not have been able to pack up our room and could not have answered any questions from anyone. Once we arrived at the hospital there would be no one to watch him and neither of us speak Spanish. If he left the room to go to the bathroom it might be the last time I would see him. I realize this is not likely to happen but there needs to be a plan in place if it does and you can’t count on strangers to step in.

harshedbuzz

M5M-

I hate to be a naysayer, but I feel like there are more ways this adventure could go sideways than not. I personally would not even attempt this without at least one other person as a backup even if you have to fund their trip.

Some random thoughts.

1. Dementia is progressive. He may be presenting differently by the time the cruise leaves. 

2. IME, moving a person out of their familiar space and routine tends to result in a hopefully temporary progression to the next stage of dementia in terms of skills and behaviors. A different place to sleep, time change, different foods and activities could set off new behaviors with which you are not adept at managing yet. 

A dear friend tended to include her mom on her family vacations in the years before mom was diagnosed. There were several incidents of mom getting up to use the bathroom and wandering out into the hall of a ship or hotel without her teeth or hearing aids with my friend on her heels. My parents used to snowbird in FL each winter; even before his diagnosis, he was out-of-sorts the first weeks or so when he first arrived at their home there (so more familiar than a hotel or stateroom) or when they returned home. 

3. Another concern for me would be the lack of social filter that comes with this stage of dementia. I don't know you, but I do know that my own mom had a much more forgiving and rosier sense of how dad presented to others than I did. The lack of social filter could be a real problem traveling internationally and on a cruise if you would be dining as part of a group. 

It could get cringy. My auntie who wouldn't say sh!t if she had a mouthful used to do wicked impersonations of her Haitian-born caregivers. My friend's mom who had always been something of a sphynx started to trade in biting snark. My dad was worse than either commenting loudly on all manner of things that shouldn't be said aloud. 

4. I found my dad to be less resilient and irritable. Things like waits, lines and, for some reason, restaurant menus were triggering for him. The logistics of international travel are more challenging these days and could be uncomfortable for him.

5. You would need a robust Plan B. Who would be your advocate if you fell ill or were injured? Who would step in to oversee your husband's well-being if you weren't able to? He might be OK in such an emergency at home, but away on a trip without you to scaffold for him it could be really scary for him. 

HB

Quilting brings calm

I agree with harshed buzz. 

I would suggest that if ( and I do mean if) you are determined to do this that you have another male go with you.  If this goes sideways, if delirium sets in, or a UTI, or he progresses faster than you think, another male will he needed.  He would accompany him to the bathroom, then bring him out to you so that your friend could then go himself   He would stay with him while you go to the bathroom, take a shower etc.  Make sure you get a stateroom that comes with a chair that you can use to put under the doorknob so that you will wake if he tries to leave the stateroom while you are asleep.  Make sure the friend accompanies you at all times  for these types of reasons.  If you turn your back on your spouse to buy something on a shore  excursion and he wanders off…

My mom was having a few confusion and money handling issues and then she was diagnosed with delirium.  A UTI was missed even though we told the doctors we thought she had one.  In just a few weeks she went from being just a little confused to what everyone thought was stage 6. She couldn’t be left alone for 5 minutes.  Didn’t know how to wipe herself after going to the bathroom.  An emergency move of 800 miles was a logistical nightmare for my husband and me. She opened  the back passenger door at 70 miles an hour.  We were just lucky she didn’t jump out before we could stop the truck.  She wanted to take her dog for a walk.  

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Quilting brings calm

Victoria - the door alarm is a better idea.  I had been thinking about my own mentioned disaster of a trip and what we did.  We didn’t have an alarm, and we were all three in the same room.  

M5M

So we are not likely going to do the international trip.  I did read some of the earlier travel posts and could see potential problems.  We are however, going on a cruise that is much closer to home and mostly in US waters or near land so we could get home if need be.  Also, it's not so intense from a sightseeing standpoint so we will have more rest time, and overall, it requires less planning from my point.  I really appreciate all the input as it helps to clarify my thinking.