How to handle luggage when flying?

You go, girl. I am impressed that you are thinking about what might be possible and planning to achieve it instead of thinking, 'But what if?' If I could isolate what I would rather be the caregiver for, it would be the colostomy and not the dementia. Together, they are a doozie. You are probably much younger than we are and not ready to give up all the lovely adventures the world offers. But take heart: staying home is not a punishment. If you both last long enough, make your home as comfortable and safe as possible. Our latest home improvement to achieve that goal is to install penny tile flooring in a utility bathroom with carpeting (UGG). It is the bathroom my husband insists on using when there are two tiled bathrooms more suitable. I have justified the cost as not going to Mexico this year one of our favorite vacation spots. (That is a joke, and I am so happy we both still enjoy making them.) Enjoy that trip. GloRo

My sweet hubby has Lewy Body Dementia, and he is around stage 6. We have flown several times, and it is a huge challenge. A few times we used carry-on bags because he is still physically strong and can help with them as long as I hand it to him or put a back pack on his back. However, the last couple of times we did check a bag, and it was not a problem. I will say that going through large airports is challenging. It is like having a 6'2" child that you have to hold on to all the time. Going to the bathroom is a big challenge. It is easy for me to wait for him to come out of the men's room, but worrying about him waiting for me is frightening...so I try to drink very little when flying (which is not healthy as flying can be very dehydrating). The last two times we have flown, I have taken either a son or our 8 year old grandson - anyone that can help with the bathroom issue and help keep an eye on him. It was definitely worth the extra ticket - even when traveling through small airports. When going through check-in and security, I always have his ID with mine and tell the agent that my hubby has LBD and severe hearing loss, and every airline has been gracious, sympathetic, and helpful. Many will pass the word down the line to make sure we get through security quickly. Many airlines give us priority boarding, so I could get us seated and put away our belongings. You simply tell them when you check in or check on the online boarding pass that there is a mental incapacity, and accommodations are readily made. We always get to airports very early to avoid long lines and mass chaos when others are stressed because of almost missing a flight, etc. I forgot to add that both of us are 68. The last time we flew was December of 2023. I am pretty sure that was our last trip on a plane. Now, it would be too dangerous for everyone as his hallucinations are 24/7 and they are not predictable as some are very frightening. I would feel terrible if something happened mid-flight. However, flying, in the past, was the best option for traveling long distances. You just have to be on 24/7 high alert and be ready to handle the unexpected. God bless and good luck. If you have anymore questions, please ask. I would live to help you.
Jan

Thank you for sharing!

My husband is in year 5+ of aADO diagnosis. Last summer we took a cruise and it all went well. I chose a straight through flight to NYC and cruise line staff met us at airport, got our luggage, drove us to ship. It went flawless. Id suggest that while at an airport you and your husband use the family bathrooms. You can google the name of the airports you’ll be using and they have a map of the airport interior including bathrooms. Print it and use it to locate the fm bathrooms. You both use it together. Also, I bought Apple AirTags for our luggage (just in case of loss) and one for my husbands wallet. On an iPhone you can track where he is in case of a problem, also onboard ship. We only went on excursions that were a bus trip with very little walking. Every day I planned for afternoon napping. Keeping my expectations low and rolling with his health of the day was so important for success.
This summer I’m planning a trip to coastal Maine. It may turn out to be too much. This year is not the same as last regarding his symptoms. A few weeks ago we flew to my son’s family (ours is a second marriage) where he’s been many many times. No flight layovers, planned for snacks and lunch to carry with us, etc. Once there my husband wasn’t demonstrating difficulty, he took a nap and woke up a different person 😬 … kept asking me Did you know we were coming here? I don’t think he realized where “here” was. My son’s home is large but he kept getting turned around, asking which room was the bathroom.
Now I’m faced with the dilemma of having him travel (change is always hard) or finding a shirt-term nine caregiver. He really isn’t “there” yet and would truly dislike it.
Put together all these tips that are being posted and wishing you a smooth and pleasant trip. You deserve it.

Hi I am new to this group, as of today. Friends and family have encouraged me to get into some type of group for a couple of years! But just today I read through a few topics and found so much common ground with all you other caregivers. I actually feel less lonely, but also reading some of the things that are hard and yet to come is more than a little depressing. I won't go on too much about my husband's diagnosis and that whole journey over the past 3 years, but he is currently 65 and began having symptoms of aphasia 5 years ago. I am recently 63. He is not fully aware of his disability and doesn't understand how much help he is getting to just shower, dress, and eat. He still dreams that now that he is retired (out on disability at 62 1/2, finally on medicare in September.) we will take fabulous cruises to exciting destinations. It's heartbreaking - he earned that, but we are using cruise money for more help around the house and some fill in care givers so I can have a break. Additionally, last November we DID take a major trip and it was, in my opinion, our last big deal. It did work - nothing bad happened - but it was the massive planning component and a travel consultant that set up everything ahead of time, and we travelled with another couple, long time friends familiar with him and his challenges. We went to Portugal and Spain, and did land tours and a cruise from Lisbon to Barcelona. He did pretty well on the flight over, and for the first 4-5 days-but really kind of started to unravel. The trip was 15 days and that is TOO LONG. The food is too rich, the alcohol too plentiful. He has FTD/Primary Progressive Aphasia and has poor self control but he's still a smart guy and would just point to a drink and say "That!" and poof, he has it. The guy loves a good meal and fine wine, and even though he ordered "BLUE", the staff realized quickly he meant red wine, lol. I didn't want to be the drink police, but I would try to distract him and be busy until dinner, and other strategies. We used a concierge travel agent who set up private tours with English speaking guides. I could not be trying to get Ubers and speak in very poor Spanish to drivers. The hotels were informed ahead of time that we had special needs, and all were extremely sensitive. We did business class and that was really helpful, the flight attendant literally looked after him while I was dozing or in the bathroom. This cost a small fortune and was the trip of a lifetime, and he remembers it when I pull the pics up on my laptop. We each had 1 large bag and one carry on. Have tip money for porters and helpers of any kind. I liked the wheel chair idea for the airport, that would have been great! At the airport in Barcelona for our return flight, my husband answered the question "Have you had control of your luggage the entire time?" with "NO." And then we were in the naughty line and got the 3rd level screening, but once they realized his condition I was able to accompany him and we made our flight home. Don't do any connections, fly direct, check everything you can, get a travel agent that understands what people with cognitive decline need, pre select food if possible, stick to a routine as much as you can. It took several months for him to get back to his pre-vacation baseline (and to pay off the credit card), and now I just plan 3 day get-away's that are drive from home. If you do a big trip, the planning is the key. Oh, in a hotel or a cruise ship, you can pay for laundry service so you don't have to bring so much, I think that is worth it. And let everyone know where ever you are that your LO has special needs, but I would spring for the concierge travel planner that sets it all up and is a one text fixer if you need help. OH! Buy the insurance, both cancellation and medical. You never know. I have told our friends that despite the fact that it was a great trip in many ways, and I am glad we did it, I won't be planning another. But you should do it if you think you both can, which is such a personal decision. My husband still wants to take cruises and when he sees an ad on tv for a cruise line, looks at me and says, "When?" and it hurts my heart because I just can't do it for him. I have wondered about hiring a caregiver and getting them a cabin, but that seems like a really expensive idea when I think he might enjoy a 3 day road trip to Pismo Beach just as much. I hope you travel and it goes well, if you can I think you should! Get lots of help and just plan, plan,plan. Safe travels and best wishes for a great trip!