As I write this, I am in Ohio for the summer taking care of my father, who has advanced dementia. My mother was his caregiver since he was diagnosed almost 8 years ago, and she suddenly passed a few months ago, turning all of our worlds upside down. That was not at all in the plan for my two sisters and me, and we soon became Dad’s caregivers, having to navigate his disease, finances, and day-to-day life.
He doesn’t know who I am most days or thinks I am his wife, sister, or mother. At this point, I don’t think we could travel with him nor would it be worth it. Hilariously, today he woke up and asked me if we were in Sanibel, as in Sanibel Island, the place we traveled to — twice — when my mother was alive and we were determined to travel as a family, even if one member of that family had a memory span of maybe 13 seconds.
The entire time we were in Sanibel, he thought we were in Bay Village, Ohio, where he raised his family.
Studies Recommend Travel For Those Diagnosed With Dementia
Despite the irony, a recent study makes the case for travel as a stimulant for those suffering from dementia, much the way a doctor would suggest exercise or music. This is very much the case in the early days of dementia, when new experiences have an impact. My parents went on Viking River Cruises and traveled to visit family in North Carolina and Upstate New York, but as the disease progresses, the reality is the person with dementia may have no idea where he or she is, and that may confuse them more.
As a caretaker, it’s important to set realistic expectations. These are the things I’ve learned traveling with my father.
1. Don’t Expect Miracles
In the early stages of the dementia disease, the family member may be excited to get out and have some recognition of where they are traveling to or an idea that they are on an adventure, which is a positive thing. As dementia progresses, which is what we experienced with my father, new environments are simply confusing. And although a sunset or fantastic meal may be a positive experience, the person with dementia will soon forget it and reflect on other memories.
In my dad’s case, he loved his time as an Air Force pilot and that is the clearest, happiest memory for him.
2. It Is No Vacation For The Caregiver
Regardless of how much effort we made, or how many times we tried to distract my father, he still needed to know where his wife, Betty, was at all times. The constant question, “Where is Betty?” was second only to “Where are we?” followed by “Where is Arnie?” referring to his constant companion, a Shih Tzu named Arnold Palmer.
My mother put on a brave front, loved having wine on the lanai overlooking the beach, and reveled in the restaurants we loved, but she was always aware of her responsibility for her husband. At a point, that is no vacation for the caregiver, although she loved being surrounded by her girls, laughing, telling stories, and trying to survive my sister’s extra strong old fashioneds.
3. It Is Best To Bring A Bit Of Home Along
We debated long and hard over whether to bring my father’s dog with us. I was on the side of “Of course, the dog needs to be there” and my sisters took the opposite side — “Just one extra thing to worry about” and “I have enough to handle on the plane.”
But our decision was made by the fact that very few accommodations on the beach allow pets. That did not stop Dad from asking about his dog on a regular basis, and I would highly suggest bringing some memento of home with you to ease the worried mind of the person with dementia and give them something upon which to focus.
4. Little Bells Everywhere
The person with dementia tends to wander, and this can occur at all hours of the night. Make sure all of the doors are locked. We put cowbells on every door. Sometimes bringing portable cameras that you can set up that will sense movement is a good way to go. They will ping your phone when somebody is on the move. It is also best to get first-floor accommodations for the same reason. In our case, on the beach, ground-floor condos allowed us to walk out to the beach. meaning less fear for my father and less chance of a fall.
5. Prepare For The Worst
People with dementia seem to have to use the bathroom on a very regular basis. A reliance on Depends is a necessity but, for the dignity of your family member, they will want to use the bathroom…a lot. So know where the bathrooms are and don’t travel far away from decent facilities. You may still have accidents.
I spent a good 20 minutes in the men’s room of a popular island restaurant because Dad defecated and it exploded out of the Depends and onto his jeans. Get over yourself and help the person in need. Believe me, everyone in that men’s room understood our dilemma.
6. Have Something To Occupy The Person With Dementia
Although my father loves to read anything in sight, he rarely comprehends anything, but it gives his eyes and mind something to concentrate on for a brief moment. We learned to have lots of reading materials on the plane and around the condo, especially those magazines with lots of pictures, like any Sports Illustrated — and in my father’s case, especially the Swimsuit Issue.
Heads Up: You may find your parent gets a bit flirty in their advanced dementia. My father actually told one of my friends he was “available” 3 months after my mother died. I almost fell over.
7. Alert The Hotel Or Resort To The Situation
Although this is not a handicap according to ADA guidelines, meaning you and your family are 100 percent responsible for the family member with dementia, it does not hurt to alert the management. The second year we traveled to Florida, we stayed at the fabulous South Seas Resort, and everyone was very respectful of the needs and limitations of my father and our family, making sure we got a first-floor beachfront condo for his comfort after the third-floor option scared him because he perceived he could fall.
There is really no end to the advice I can give about traveling with a family member with dementia. In advanced stages, they will get little out of travel but the rest of the family will benefit from supporting each other. Studies that recommend travel as a cognitive benefit are most likely referring to earlier stages of dementia, where there is still some learning and more awareness of the person’s environment.
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