How to handle luggage when flying?

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

Ask for a wheelchair to meet you at car drop off. This can be arranged ahead. Also be very frank about "disability" with cruise customer service or airlines about limitations, and need for porter to handle luggage. Business are getting better at providing accommodations, provided that you tell them ahead, conform just before leaving, to avoid request slipping thru cracks. Avoid mega carryons....take only absolutely necessities on board.

Thank you for sharing!

Porter sounds most helpful! Thank you

Jan, my husband is 80 and I am 73. We have flown a great deal but I am trying to think ahead on what confusion we will face with luggage this time. You were most helpful in getting me to anticipate issues!

Travel very light; pack just the minimum. You will need to focus on your spouse dealing with strange surroundings so you don’t want to be worrying about luggage. You don’t want to look vulnerable by struggling to manage LO & luggage. And not to be a Debbie Downer but seriously consider if the trip is worth it. I took a “last trip together” with my husband several years ago - when his dementia was not as bad. As soon as I had him out of his familiar surroundings it was chaos for him. Sometimes we don’t have an accurate assessment of their true condition until there are out of their comfort zone. On a different note, decades ago I took my parents on a cruise. I stayed in same cabin to assist with my father, who had progressing dementia. We thought he did really well but after they returned home, he kept saying to my mom “I don’t want to go back on the boat!” We didn’t realize how upsetting it had been for him at the time.

Last year, I moved heaven and hell to accomplish a road trip from Michigan to Indiana to Illinois for a visit to my two best friends (probably the last chance to see each other), both of whom have health issues worse than mine; and spending time with my daughter, whom I rarely see. I am the most capable in the lottery of life, though my trusty walker is never far away. My lovely husband, who has dementia and a colostomy, was my traveling companion for most of the time we would be away from home. Are you getting some idea of the complexity of the plan? -- His son drove us to and fro; his daughter took her father for five days so I could solo with my friends. My daughter supplied accommodations for people she barely knew. It was wonderful. It was exhausting. -- Although the schedule was arranged to give my LO time to adjust between each change, he woke every morning and asked me where he was. That reminder was added to the long list of instructions given to his daughter at the handoff. When we returned home, it took him over a month to embrace his routine, which keeps him happy. -- Am I glad that we did it? Yes. I am 86, and opportunity is slipping away. Would I do it again? I don't know. He is 94, and opportunity is slipping away and I became fully aware of his inability to go with the flow. -- As caregivers, the aim is to provide a stable environment; if we accomplish it, routine can mask the extent of the dementia. And we fool ourselves that this routine means progress. -- Would I travel with my LO again? These days, I am completely exhausted by walking through the many-football-field sized Meier where we shop. Talking myself into driving there and back for necessities has become a battle of will over the body. -- Still, I have a folder with information on flights and a hotel with a restaurant for the required stopover to recoup from the first leg of the trip to California, where my daughter has a vacation home. Spending three weeks with her and all that sunshine would be so lovely. If only Scotty could beam us there, I would not hesitate. But I think the details in the travel folder are not based on reality. Still, I have not yet tossed it. -- It strikes me there is little practical information on if, when, and how to travel with someone who has dementia. If you choose to go for an experience, I can suggest your mantra should be Plan, Plan, Plan. Think of every contingency. Make lists. Traveling light might include luggage sent ahead and direct delivery to your destination from providers of incontinent and medical equipment and/or supplies. Use the walker service at airports. Get two walkers if, like me, the caregiver, long treks are beyond you.
If you need to use your own walker, remember that the airlines will stow it along with the carry-on luggage that is not stowed overhead for easy retrieval upon arrival. Make sure it is tagged with your name and phone number. No detail is too small to consider. -- And if you choose not to travel, do not think it is a failure. Be happy there will be nothing left behind. Watch a travel log. -- GloRo

Oh My! You are Wonder Woman! I also think I am Wonder Woman but I know this is going to be a test. My husband is 80 and I am 73 but with health problems. He wants to go and he is aware of his limitations, as of now. I have, over the last 1-2 years since his diagnosis, grasped a handle on planning and learned patience I never had. Knowing now that I am taking a chance will be helpful for me to see what we can still do and have fun. Thank you for your open input and advice!

@boppi have you thought about doing a ‘trial run’ locally by staying at a hotel somewhat nearby? You could park your car somewhere and catch a cab to the hotel. Take suitcases, even if they’re empty. Do everything new just to test both of you and see how you manage.
Do you think this could work?

Great idea, thanks. We have actually had a trial run a few weeks back when we packed up and drove a few hours to spend a week in a rental at the beach. It went beautifully because we took our time about everything and the scenery was magnificent. Jim had no serious issues and it was encouraging that he still so much wants to see new things…as long as I am with him, as he puts it. My only concerns centered around the flight, luggage, and plane changes with layovers. I have bought some new luggage which is much lighter than we had before and will go as lightly as possible so we can handle. I am going to think positive and take deep breaths. I have bought him some appropriate reading material and book games we can play for distraction.