Traveling With Early Stage Alzheimer’s 14

Would you let your health dictate whether you can follow your dreams? Jim and Geri Taylor don’t. Geri, a member of the Alzheimer’s Association Early-stage Advisory Group and someone with early stage Alzheimer’s, still travels frequently. She and her husband were wonderful enough to talk about some of the things they do to make their trips successful.

Geri says that hobbies like photography make travel easier for those with early stage Alzheimer's.

Geri says that hobbies like photography make travel easier for those with early stage Alzheimer’s.

Why do they travel? Jim says, “Being diagnosed doesn’t mean your life needs to change or is interrupted. Make modifications when necessary and still live life to the fullest.” With a lifestyle designed around several locations, this couple is frequently on the go. They spend the winter months in Florida and move between a home in Connecticut and another in New York City the rest of the year. They also spend time in Colorado. In addition, Geri is very active with her role in the Advisory Group and travels to quite a few events.

Traveling by Plane

Of course, travel doesn’t always go smoothly. Geri says that plane changes or delays have been the hardest to handle. “Anything requiring an unexpected overnight, such as bad weather. You need to have a breakdown kit with meds and essentials in case you have to bail on your planned path.”

Jim suggests flying directly whenever you can. “Cause as little disruption with their routine as possible. Pick times that don’t disrupt daily life, such as when napping, as often as possible.”

Afraid to travel by plane with a disability or chronic illness? Jim says, “Security is always the biggest hassle. Checking baggage and security. Stay together and don’t allow the caregiver and partner to be separated if possible. Be comfortable sharing with security that you have Alzheimer’s and shouldn’t be separated. Don’t be reticent. You strongly limit your ability to have safe travel.”

The couple have some additional tips for making plane travel go smoothly:

  1. You should avoid checking baggage to avoid anxiety at the end of your trip. Take a picture before checking it if you must do so, and mark it clearly.
  2. With the whole issue of lost baggage, have a second little kit of medications and essentials because the medication issue is very big. It needs to be an “on your person” kit.
  3. If you both lose your phones, you need to have a list of written emergency numbers in your billfold.

Traveling by Car

If you are traveling by car, Jim has some tips for making the trip easier. “It is more difficult to sleep in a different place each night when traveling in a car. It is challenging, even with being a positive person, because you are faced with re-orienting each night. Book nicer hotels for nicer surroundings that are more aesthetically pleasing. We check out the entire surrounding of the hotel so we know where the coffee shop and lobby are in case she wants to go down and read. Get as comfortable with where you are staying as possible.”

Geri adds, “For people with Alzheimer’s, sleeping patterns are often disrupted. We stayed in a cheap place overlooking the water and I needed a cup of coffee and a place to read. I had to sit with the concierge. Strip motels are hard to stay at.”

Jim says “Geri doesn’t drive anymore since she felt her attention started wandering. We live in NYC half the time  so her need was mitigated. I do the driving and drive her to the things she wants to do. In planning a trip you lay out daily distances one driver can manage and include frequent rest stops. Be aware the person with you won’t be a good navigator. Frequently, reading maps becomes difficult right away, so use GPS or a phone app that talks to you. On a really long trip, we enjoy a book on tape or song list. This type of thing has been a great companion and we find it particularly pleasant.”

Traveling Between a Vacation Home and Primary Home

Jim says, “As memories begin to fade, have a list of things that you regularly do and carry between the homes. One of the things we always need to do is close the home we’re leaving. Have a checklist of things you need to bring between homes and a checklist of how you need to close the home you’re leaving. I would chronically forget something without it.

Travel in non-peak hours. It is treacherous between NYC and Connecticut during peak hours and doubles travel time.”

Avoid Risky Behavior

Planning a foodie vacation? Geri warns, “Most people aware of Alzheimer’s disease are on medication and are being intentional about eating. A foodie vacation is risky. Be cautious. This isn’t a time to be experimental with food.”

Jim agrees, saying, “We found that it is safer for people with the disease to not vary from regular menu. Being away from home and ill isn’t a pleasant experience.”

Planning to visit family over the holidays? Jim has some encouraging words. “A lot of travel is back and forth to family and there is stress sometimes related to those situations. Most people with the disease have found family to be wonderfully supportive. A lot of stigma with Alzheimer’s is beginning to break down. People are beginning to be diagnosed earlier and with less stigma. Stigma is less and less. Going to visit the family has less tension and stress than before.”

Enjoy the Journey

Jim and Geri have enjoyed a lot of special moments on their journey, but for Jim, the best moment was being on top of Mt. Holy Cross in Colorado. Geri, who is a bird photographer says, “My real highlight – I got a remarkably good picture of a hummingbird. It was published in the New York Times and was a result of our travel to Colorado. That was really special and my photography continues to be a major enjoyment. It is mine and my space and the photo was related to traveling. No matter how well I’m functioning, I’m reminded I do have that.”

Geri adds, “The pleasure of traveling is what you bring with you. Bringing my photography equipment helps. It would help to bring whatever your favorite hobby is, from knitting, etc., even if you are leaving an outfit out to make the room. One of the things about traveling is that people with Alzheimer’s, very many of us, the world gets to be too much because there is so much to process. Having a respite, such as your knitting or photography gives you space. A respite from social and family communication gives them space where they don’t have to handle words and can have a break without having to sleep. My camera is pretty much stitched to my hip.”

Final Thoughts

Jim says, ” The most important thing is that we’ve tried to do the opposite. Instead of letting the disease slow our life down, we’ve tried to accelerate. Eventually, we may not be able to, but we are trying to make these years as full and vibrant as possible. Travel is one aspect of that. Be intentional and thoughtful. With planning and forethought, travel doesn’t need to be limited but can be continued.”

Geri added, “It is important to be more intentional. That’s the most important thing.”

For more on Geri’s journey through her Alzheimer’s diagnosis and how it has affected her, see the New York Times article Fraying at the Edges.

About KateTravels

Kate loves to explore new places. She often begins planning her next trip before her suitcase is unpacked! She is currently working on her goal of fifty by 50, with detours to places outside the USA or trips back to states she's already visited to discover new towns or enjoy new sights. In addition to travel, Kate is passionate about photography, dabbles in painting and cannot start her mornings without a good cup of tea. Her most recent travels were to Rhode Island and the Azores. She will also be traveling to the Eastern shore of Maryland and Iceland in 2016.

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14 thoughts on “Traveling With Early Stage Alzheimer’s

  • Cherene Saradar

    What an interesting thoughtful post. I have never given this issue much thought, which is shameful since i worked as a nurse with Alzheimer’s patients. I never thought about what traveling would be like for them. I think this is wonderful how this couple is still managing to live their dreams. Very inspiring! Thanks for sharing!

  • Chiera

    What an inspiring post! I can imagine this post with give a lot of people comfort and confidence with traveling if they re suffereing from any illness. Thank you for sharing 🙂

  • Jing

    Very inspiring story! Jim and Geri are perfect examples of strong will and determination to go on living and reaching their goals despite circumstances which can lead others to think they can’t otherwise.

  • Amy

    What a beautiful interview. This couple is so inspiring, and the outlook on life is something we can all take a lesson in. My Mom has Parkinsons, so I completely understand the worry of traveling with such necessary medications. I love that they are working to create as many memories as possible, and not allowing the disease to slow them down. Such a great message to those who need it!!

  • Tom

    wowo,I have never seen a travel blog post like this. Nice to focus on the ability to travel, not just on the journey. Reminds me that I’m lucky not to have to worry about that aspect, yet.

  • Carmen's Luxury Travel

    “The most important thing is that we’ve tried to do the opposite. Instead of letting the disease slow our life down, we’ve tried to accelerate.” Wow, incredible people. I loved reading this so much, thanks for sharing their story! So inspiring.

  • Kristen Sarra

    That’s incredibly amazing that they continue to travel. I love that Geri inspires others diagnosed with early Alzheimer’s to live their life to the fullest. It’s such a debilitating disease so for her to continue to find these pockets of joy and hope is just incredible.

  • Lara Dunning

    I’ve never thought about this aspect of traveling, and these sound like all great tips for having a great trip and seeing the world. Kudos to them for continuing with their traveling dreams.

  • Colby

    This is such a great and inspiring post. I lost 2 family members to Alzheimers so I know how difficult it can be, but it’s so great to see people not being limited by it and still going out and living life to the fullest.