Traveling

CindyBum

Hope you all are hanging in there as best you can. I am sitting on this quiet morning, DW asleep, and enjoying a little time to myself. Well, sort of enjoying. My mind is spinning away about a trip I need to take to visit my parents back in the midwest. A five hour flight, potentially with my DW. I know it will be a terrible idea to bring her...she nearly panics on a plane these days because her anxiety is sohigh, but I her desire to go with me is so strong, I find myself wondering how much Atavan I can give her to bring her along. Let's just say I never thought I'd be thinking about how I can give my DW drugs to calm her down.

Part of my waffling on bringing her is honestly about whether or not I'm really thinking she shouldn't come is because it would be so much easier for me, which doesn't seem all that fair to her. It will certainly be a challenge for her and her anxiety and confusion as well. She's just far enough along to make me worry, but still sort of here enough to maybe be able to do it. And I've never been able to resist her requests for things. She keeps saying she wants to go. I am maybe a bit too much of a people pleaser and still so in love and want to make her happy, that I give in to please her, even though I mostly know she just doesn't want to leave my side and that's why she wants to go.

Stage 4. What a weird space to be in when you can almost think your LO is able to do things, but they're really not. Or, at least that's Stage 4 for me and my DW.

charley0419

I know exactly what you going through, my wife needs me by her side at all times.

midge333

My DW is solidly in stage 5 and I have decided not to travel anymore. Her dementia (vascular) is a long term complication of juvenile diabetes. She is on an insulin pump that she has not managed in several years. If we would become separated while traveling, she is incapable of fending for herself. We last took a road trip when she was stage 4 and while stressful for me, it was a success.

CindyBum

That makes sense, midge. I know if my DW and I got separated, she'd be totally lost and I'd be losing my mind trying to find her.

I really should trust my gut on this one and not bring her, but I'm still fighting it for some reason.

harshedbuzz

@CindyBum

When you remove your wife from her familiar surroundings and routine, you can anticipate a change in skills and behaviors equal to one stage of progression. While you're planning on this in the context of Stage 4, she's likely to be more like Stage 5 as a travel companion. She could potentially not recognize your parents and become agitated. She might dip a toe into incontinence. The other issue is the lack of empathy and attention seeking many PWD have; it could impact the quality of the visit with your parents at a time when you might not have many more chance to see them.

I wouldn't attempt this unless you can bring another adult to keep an eye on her while you use the mens room, collect baggage and such.

In your shoes, I might try a weekend away locally in a hotel to get a sense of how she'll adapt.

HB

jfkoc

No way wouold I attempt a 5 hour flight to a place she does ot know. Road trip? Absolutely a doable but I would still try a weekend trip to test the waters. You can end a road trip at any time. Once on that plane you are stuck! No control.

FTDCaregiver1

Traveling with Dementia: 6 Ways to Know If It Will Work – DailyCaring

Jeanne C.

Woo, this is a tough one. I say trust your gut on this. Stage 4/5 with my husband included a lot of rage on his part. I had considered a trip to Florida last Easter and then imagined him on a plane - basically I pictured us as the 3rd story on the evening news with a passenger (my husband) freaking out midair and being subdued by the hero passengers and duct taped to a seat. Is it possible for you to arrange respite care for your wife so you can enjoy a visit with your folks and she is safely cared for?

Belle60

We recently took my DH's bucket list trip in January. It was a 13-hour flight. I had reservations but it was his dream and I wanted him to go. DH is about stage 4 but has never minded flying. So flying wasn't the issue but the daily changes to our schedule was. We actually fly a lot because all our family live elsewhere. So, I think he was used to it, but it does require a lot of prep on my end. I was concerned about being separated so I put an air tag on his belt buckle. We certainly had some challenges, and he was not able to follow the itinerary but fortunately he listened to me. It was a bit exhausting requiring daily organization and lot of moving parts. But I am glad we did it. Not sure how long he will be able to travel.

I wonder if your DW would be more anxious if you went without her.

annie51

It definitely is a hard decision. I took a ski trip with my DH this past January through our ski club. He really wanted to go and I booked it about 7 months earlier (I got "cancel for any reason" travel insurance because you just never know). I was very stressed about it and not sure how he would handle it. The worst part was making him understand that we have to wait until we're called - next time, I'll get with the gate agent and ask for early boarding. He handled the 3.5 hour flight ok, but if there had been any long waits on the tarmac I don't know how that would go. There were a couple of nights where he woke up not knowing where he was or getting angry about the toilet not working right. But I'm more experienced now at calming him down when that happens so we got through that. And he would ski just a little while and be ready to stop. Overall I guess I'm glad we went but there were so many things that made it not as fun and more mentally exhausting as our previous trips that I may try to discourage it next year.

I did the same thing as Belle60 using an airtag in his wallet in case we got separated so that relieved some stress. And our trip leader was good about checking him in the men's room while I waited outside.

My DH wants to be with me all the time also and panics when he doesn't see me. So I know how you feel there, too. Let us know what you decide and how it went.

gampiano

Hi Cindy Bum,

My DH passed in October. We had a 7 year ordeal with ALZ, with me as the sole caregiver. Last week I took a trip with my daughter for a much needed vacation. I can tell you that the chaos of the airport/flying experience, the crowds, the restrooms, the PA system, just to name a few things, all made me realize how my decision not to fly with my husband from stage 4 on, was the right one. Even with a wheelchair it would have been horrendous. Do you have someone who can stay with your wife at home? Or, if you must take her with you, can you bring another person to assist?

I know this is hard, but you have to think of two people here. The stress on you would be heavy, and we caregivers are not easily replaced.

Best to you,

Maureen

GothicGremlin

You might think I'm nuts, and maybe I am, but ....

My sister's bucket list item was a trip to Italy/Sicily. My family is Italian, so this was her one opportunity to see where our ancestors came from. Since she hadn't flown at all since 9/11 (that event freaked her out so much), when she said she really wanted to go, even when I reminded her of 9/11, I knew it was that important to her. So I made it happen. She was probably very late stage 4 at that point. There were only a couple of harbingers of the incontinence to come, so I thought it wouldn't be an issue (it wasn't, whew).

California to Heathrow in London is about a 10 hour flight. Customs took another 45 min or so, then changing flights to another smaller plane to get to Italy for another hour +. So it was a process.

I used TSA Cares to get her through security (you can use this domestically too). Usually I hate the TSA, but I have to give them credit here, they were great with Peggy. The process was essentially pre-check for me, my s.o., and Peggy, and they let me guide her through the metal detector. We used miles so that could upgrade to business class so that it would be quieter, much quieter, and I made sure to have wheelchairs for all transits through airports.

I made sure we had adjoining rooms, and I let staff know about Peggy's dementia so that we were all on the same page.

I won't lie, it was stressful from start to finish, and time-consuming to plan, but the end result was great. Peggy had a great time, with only a couple of short meltdowns. She talked about that trip until probably the last four months of her life. If I had to do it over again, I would. Just know that you're probably not going to get much rest, you're going to be stressed out, and banish all thoughts that this will be a vacation.

Knowing what I know now, if Peggy was even just a little bit farther down the road, I probably wouldn't have done the trip, but stage 4 for her was doable. We made it just in time.

So yeah, much to think about.

Bill_2001

Traveling has been over for us since 2019. If family and friends want to see us or her, they must come here. We spend a lot of time alone now. What a surprise.

AlzWife2023

https://alzconnected.org/discussion/68673/traveling

Safety first. I can’t even image taking my DH on a plane trip though I’ve indulged in the fantasy for 30 seconds or so. Concentrate on finding someone to stay with your DW who you can trust then go and enjoy yourself. Give yourself a break.

M1

Cindy, maybe this would be a time to try respite care for het? See how she does, while you take your trip.

Belle60

https://alzconnected.org/discussion/comment/203494#Comment_203494

Can you tell me a little more about how TSACares works? We are both precheck and we get our things organized before entering the TSA area. I also let him go ahead of me. I went ahead of him one time and he tried to hand me something after I had went through and the agents freaked out!

GothicGremlin

@Belle60 Sure. I gave them a call (the number's on their website), and told them what was up with us. They wanted all of our flight info, airport info, passport info (b/c it was an international flight), and a brief description of Peggy's abilities. When the day came, if I'm remembering correctly, we had a time when we were supposed to meet the agent at the line. When I had called the Cares line, they gave me a specific place for us to wait at our airport.

It all worked like a charm. We got to our appointed spot, the agent was there waiting for us, and escorted us in. I think he actually had some experience with guiding people with dementia through security. The agent talked to Peggy in a calm voice for a couple of minutes so that she could be comfortable, and then we went through the metal detectors, just like a regular pre-check experience. I was allowed to be next to her (but couldn't touch her - and definitely no passing objects between us). I know it could have gone sideways, but it didn't.

We did our best to avoid the noisy areas and as we walked to the lounge, I made sure to hold her hand. That way she knew where I was at all times (and vice versa!).

20-20 hindsight -- we did that trip just in time. Honestly, a month or two later and it would have been a fiasco. So if you're thinking of a trip, do it soon, don't put it off. Plan to overplan.

jsps139_

I really give you travelers credit! There is no way I would attempt traveling with my DH. I recently read … “any interruption in their schedule is the enemy.” I can really relate to that. We do the same things day in and day out, and he does pretty good. If we do something he’s not used to … here comes the confusion! But, that is just us - I think if you have the gumption to do it, and think it will work in your case, go for it and enjoy. I admire you for giving it a try!

Belle60

https://alzconnected.org/discussion/comment/203574#Comment_203574

Thank You! Very helpful information. I am going to give it a try next time we travel!