How to handle luggage when flying?

@jmg60. Welcome to Mayo Clinic Connect! Boy, you started out with a bang! Giving great tips and advice to @boppie and other caretakers. I do hope you’ll stick with us and get some advice and encouragement from other members.

Haha yes I have just been on my own the last three years! Looking forward to hearing other ideas, strategies, and experiences. It often feels pretty lonely. Thanks for the welcome!

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!

Yes, welcome. I am in awe of how you planned for and gave yourself permission to spend the money necessary to have the way smoothed well ahead of you both as each part of the trip unfolded- kudos and double kudos!
And yes, hanging out with us will give you unfortunate insight into what is to come. I passed the no more trips milestone about two years ago. Two weeks ago, things went south in a big way at my husband’s longtime barber, and I’ve realized that it’s time to use the facility’s.
Working with what you’ve got to work with and accepting the continual decline is hard, we’re here for you.

Hi- thanks and m at I ask how long your husband has been in a facility? I assume it’s memory care- and his age? My husband is young and when I visit them to check them out it’s even more depressing…he won’t fit in.

My husband went into assistive living at 77, he has a diagnosis of vascular dementia, his first neuropsych testing was 10 years ago, when he mentioned to his PCP that he was noticing memory problems. The test results led to the diagnosis of MCI, so I knew what was coming, just took awhile to get there. My job as a Home Care OT took me in and out of all local ALs and nursing homes.

I would recommend not holding yourself to just looking at “Memory Care”units unless he is a wanderer and needs a locked unit (not a lot of dementia people have this motivation and initiative). On a “general” floor, there will be people of varying ages, who for whatever reason, need the structure and available care in AL. Some have diabetes and need close monitoring (4 sticks daily) and no one at home to do the sticks and draw up the insulin. Some have had strokes, cognitively fine, but again, without a caregiver at home. Some have adult children who live a distance and couldn’t keep up with all the duties of keeping a home or apartment going. My husband was taken in by a group of four guys- three have dementia and the leader has had a stroke. He gets everybody laughing, organizes calling on his cellphone weekly for DoorDash to bring take-out, and schedules the retired guys from his band to come in monthly and play for everyone. You’ll be surprised how the opportunities for socialization (especially with “the guys”) will brighten your hubby’s spirits.
When making visits to see if a place might suit, of course, look for cleanliness, repairs done, no unpleasant odors, residents look well-cared for , etc. Then, I believe the best advice is to not look for chandeliers, but to look for how the staff appears- do you see kindness in their interactions with the residents, is there laughing, maybe a little teasing, are there smiles, do they make eye contact with you? My area has several “luxurious” ALs, the one I chose has “family home” vibe and not a single chandelier 🤣
Funny story- there is a bus stop/shelter with a bench near my husband’s AL. The “guy group” thinks it’s hilarious to take a walk there (the leader keeps the dementia guys together and is pushed in his wheelchair by one). They park themselves on the bench at the bus shelter and wait for the next bus. The drivers stop, look at this group in horror, they laugh uproariously and say they’re just resting from a walk. Laughter and teasing ensue, the drivers are getting to know them and they always stop.