Traveling with Spouse

Brokenhearted in Illinois

My Dh was diagnosed with early onset AD on April 2022. I would love to take him to back to his favorite city - New Orleans for Christmas He is about stage 5 -early 6. Trying to decide if this a good idea or not. I have to keep him safe. - he does get lost our home sometimes. Any travel tips for staying in s hotel? AirBNB is out Etc? He would love to go snd remembers happy times in NOLA Also flying- do the airlines provide any special assistance for travelers with Alzheimer’s? All advice appreciated.

A. Marie

Brokenhearted, if your DH is starting to get lost in your home, I'd say that travel is definitely not a good idea. I'm so sorry. (I'm a Stage 8 widow who's been there.)

M1

Agree that I'd be reluctant. I traveled with my partner up through stage 3-4 but wouldn't even begin to attempt it now (stage 5-6). Especially if it were just the two of you. How would you even handle bathrooms, for example?

jfkoc

If you can stay in the quarter Like maybe the Place d'Armes where you can walk everywhere I would go for it. Linger at Cafe de Monde...sit at the counter for a muffeletta at Central taking home 1/2 for dinner in your room with some Aunt Sally's pralines. Yum. Can I join you???

Chammer

Dang @jfkoc you made me hungry!

Joe C.

I traveled with DW through early progression up until late stage 5 maybe early stage 6. At the end I had other family members accompany me for an extra set of eyes in airports or other busy places and to go into the ladies room with her. It is very easy for the PWD to wander off on get lost at times when you might get distracted. If you decide to go make sure you have some type of tracking device on him in case you get separated. I am grateful that we got to travel as much as we did but you do need to be very careful.

Another tip is if your trip involves air travel contact the TSA Cares program (just google TSA cares), they will provide a dedicated agent to escort you through security screening to make sure you do not get separated. I always used it for air travel and it made navigating security much easier.

JDancer

Many public places, including airports, have "family restrooms." So you and PWD don't have to be separated for bathroom breaks.

Denise1847

When we went on a cruise last year (no flying), it was such a downer. My DH couldn't really participate in activities. My DH woke up the 2nd day of the cruise not knowing where he was. The excursions were challenging. Our best moments were eating and listening to music. I thought "just one last time", but honestly, it made me so sad to see the contrast of what we used to do and watching others enjoying their lives. I realized later that somehow I just wanted to turn back the clock and give us more time.

Just think about what you will be able to do on the trip, whether it is worth the stress. Is there a local place you can go that is similar to the sites he wants to see that you both could enjoy. If you go, put a luggage tracker into his wallet, have contact information on him or a bracelet with information on it.

I hope it works out.

Vitruvius

First I will note that NOLA's airport, in addition to the TSA program also has the Sunflower Lanyard program. From their website: "This program allows our staff to identify those in need of an extra level of customer service by use of a sunflower lanyard or bracelet. We want to ensure a positive travel experience to all of our passengers at MSY". It's free, Google it for more info.

Secondly, if you decide to take such a trip, keep it very simple and be prepared for significantly increased confusion including a strong desire by the PWD to want to go home, meaning cutting your trip short. The last trip with my DW, at maybe Stage 5, started out OK but after a three days she was desperate to go home. Being out of her familiar surroundings and out of her familiar routine became very stressful for her and she became very unhappy. Fortunately I had decided to drive (but unfortunately 7 hours away) so I was able to cut the trip short. The drive back was not fun.

I suggest watching a few YouTube travel videos on visiting NOLA and gauging his interest.

ButterflyWings

I'm on Team "Go For It". As long as you manage expectations (your own, I find it best to have none at all), and be prepared to return home at any time, it is worth the effort in my view. We have traveled internationally even in late 6, with heavy reinforcements, including a travel support team of 2-4 TRUSTED friends whose focus was to provide extra eyes, ears, and hands - so all I had to do was focus on DH.

On the success spectrum, our results have ranged from good/great, to not so good, to barely escaping disaster. I am a risk averse person so trust me, I was not up for thrills or ignorant to all that could go wrong. But I've chosen times when DH was particularly strong and mobile, knowing that could all change with no warning. And the locations were familiar, including known accommodations with careful planning and a VERY flexible schedule. In our favor, DH always loved to go and do, and is not anxious about different places and people generally as long as they are not trying to engage him directly (he just won't, or can't) so its just the 2 of us in his view, no matter where we are. Others with us stay in the background or do their own thing once at any destination.

Search for "Travel" posts for more input. For me, our few trips even in later stages have been respite for me. We/he can't do what previously was possible, but I enjoy being with him and the day will come again when he won't or can't even leave the room. My point of view is, I can be changing adult undergarments at home or in a nice getaway locale where I enjoy the sights, sounds, foods and choose to see what moments of joy we can grab. It might be the sunrise, window shopping, room service, or TV, rather than a special event or gathering. The same dementia club rules apply, even moreso as the members said, e.g. in a new setting confusion is a given.

FYI -The tips for TSA Cares, family bathrooms, and travel companions are excellent. Essential.

• And I keep meds, incontinence/hygiene supplies etc. with me at all times. (Although someone else may carry them for us temporarily, I mean these are not items I ever, ever check in baggage, for fear of losing them when flying.)
• Small snacks that I know DH will eat, were always in my pocket or bag. Granola bars, raisins, etc.
• The last trip, we had on matching clothes (his shirt was the same print as my skirt). If separated, "He's with me!" But, we don't separate. I literally hold his hand. At all times. He was a wanderer for many years so...
• Good luck!

BPS

My wife used to love to travel and was still able to without much problem but neither of us enjoyed our last trip. She is still able to get around pretty good but even though she wanted to go when we got there she didn't want to do anything and she can't carry on a conversation so we mostly set in the hotel and then went home and she didn't remember going. luckily it was a short trip but it was disappointing.

wizmo

You know best how predictable/consistent his behavior may be so it's really your call.

Before you commit, ask what is the worst possible outcome? Here are some examples. He gets disoriented and doesn't like being in a "strange place". He somehow wanders away and escapes - are you prepared to track/locate him away from home? You cannot find a family restroom in time and he has an accident - will you have change of clothing? He refuses to cooperate at some critical time like getting on the plane - will there be a later flight or will you have to stay an extra unplanned night? He unpacks luggage in the hotel room just as you are getting ready to depart and you miss the flight. He cannot navigate the hotel room at night and falls or gets hurt.

Is this for you or him? He might enjoy some of it in the moment but likely will forget in short time that it ever happened. Will your memory be of a vacation enjoyed or of an arduous journey filled with difficult chores?

If you do go, at least request a wheelchair assist or escort through security and request pre-boarding. Allow lots of extra time for unplanned problems. The airlines can be very accommodating if they know in advance you need extra time/assistance.

We were able to travel comfortably maybe into stage 4. We traveled to visit family late stage 5 / early stage 6 and I felt it was a big risk. She did have some bad days at the destination and we were able to handle it by curtailing activities. Fortunately we got through the travel days without incident but it could have been disastrous if her worst behavior had come out at the wrong time. I don't know that we could do air travel again.

Judy.T.

My DH is stage 5. We recently went on a mini vacation. I took our adult son to help. here are a few tips

1) when going through airport security always keep LO in between you in line. Our son went through first then kept his dad form wondering off. TSA was very kind when they had to pat him down. They realized he had trouble following directions. Don't wear a belt. DH got confused and tried to take off pants when they said take off your belt. Sweatpants are comfortable and easier to use restroom.

2) get alarm door stoppers! They are on amazon wedge shaped and when the door opens the alarm screams. It will help prevent finding your LO in the hallway, at 3am, in their underwear, knocking on random doors, looking for the bathroom.

3) Keep plenty of snacks & drinks.

Good luck! Enjoy anytime you get to spend together.