En español | When I suggested to my family that we to go to Florida's Sanibel and Captiva Islands last December, they jumped at the idea. My parents, who are both in their mid-80s, had spent a few weeks on Sanibel each winter for about 10 years, so it was familiar. And it seemed like an ideal destination for a relaxing trip, where we could be joined by my sisters — Tricia, who lives in Columbus, Ohio, and Jennie, in Raleigh, North Carolina. There are hundreds of condos stretched along the islands’ shell-packed beaches but nothing feels crowded, while tennis, watersports, beach walking and reading by the shore are the primary activities between eating and drinking. I'd join them from my home in Northern California.
Three years ago, when my father was diagnosed with dementia, we started taking my mother away from their Bay Village, Ohio, home for a short annual break from caregiving for my dad. She loved seeing Hamilton in New York, then enjoyed Charleston and its southern charm and fabulous food the next year. This year, we thought, we would bring Dad; maybe it would bring back memories, and he would feel comfortable in a place he once loved.
But by now my father's cognitive decline was full-blown Alzheimer's; his increasing memory loss meant his disease was progressing rapidly. But my father is still quite mobile and his doctor wasn't concerned about his flying to join us on vacation. And Dad seemed to like the idea when we explained it — repeatedly, due to his memory loss. I grabbed the calendar he checked several times a day and filled it with notations like “two weeks til Sanibel” and “beach coming soon.” He seemed to understand that we were going to one of his favorite haunts.
The day finally arrived. Except for the brisk removal of a mask that sent my dad's $7,000 hearing aids flying across the airport floor, everyone arrived with little incident (my mom and sister were both on hand to assist him), and we settled in. As we soon found out, the best place to be was at our condo on the beach. We had a handful of meals at restaurants, but mostly cooked our own, and they turned out better than the hot dogs and sandwiches, pasta and chicken than we could find at the local tourist spots.
There were disappointments, though. Dad did not really want to walk the beach and needed to use the restroom frequently. And while we had hopes that his memory cloud might lift during this getaway, they were dashed every morning when he woke up and asked where he was (the first of dozens of times throughout the day). Except for two hilarious nights where he was as clear and funny as he used to be, we spent a lot of time answering his endless questions and trying to keep him engaged.
It helped to maintain a sense of humor. One day he woke up and announced that he knew why he was in Florida. “I'm a travel writer and I am here to do a story on this place,” he declared to my mother, who surely did not keep a straight face.
The bottom line is that it was not the idyllic family vacation we'd hoped for, but it was, nevertheless, fantastic to be together, read on the beach, cook crazy meals and spend time with Dad. He seemed to enjoy himself, at least sometimes; he was more talkative than he is at home, and he reminisced about the trip a bit for a few weeks after returning home.
And we learned a few things. For one, next time we will bring Dad's dog, Arnie — his touchstone, his pal, his responsibility. He needs my mother in sight at all times, too, but Arnie can be the dam that holds back his moments of panic. We also need to keep sports magazines on hand as a diversion and be prepared to bring loads of patience.
A few more tips for traveling with a relative who has dementia:
1. Strategize. Before you go, think about the problems that might arise and how you'd handle them. For our family, that meant having one sister travel on the plane with my parents, in case my mom needed help navigating with my dad, and I went ahead to be sure the condo was equipped with food and drinks when they arrived.
2. Keep relatively close to home. This will decrease time in transit, which can be stressful for someone with dementia. Our trip would have certainly been easier if it didn't require flying or an extremely long drive.
3. Explain the plan to your loved one. Begin well before the trip describing where you are going and what you may do, even if you will need to repeat it often.
4. Try to stick with the familiar. Having beloved, comforting people and pets on hand is key. In our case that was my mother. We should have brought my father's dog as well, because he looked for little Arnie every day. And we chose to go to a location my parents had been many times.
5. Manage expectations. Your loved one may not be as thrilled by the trip as you hoped they would be. My father sometimes said he wanted to be home.
6. Allow for lots of downtime; don't overschedule or overstimulate.
7. Try to schedule travel and activities at a time of day when the memory-affected family member is most aware and less prone to panic.
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8. Pack smart. Whether you fly or drive, pack a bag with all of your loved one's medications, games to play and a smartphone or iPad for entertainment. Make sure you bring any relevant medical information and insurance cards, know where hospital facilities are located at your destination and have a back-up plan and travel insurance in case there is a need to cancel. You may want to give your loved one an ID bracelet if wandering is an issue.
9. If you're flying, arrive at the airport extra early. Before your trip, you can contact the TSA helpline, TSA Cares, toll free at 1-855-787-2227 or email TSA-ContactCenter@tsa.dhs.gov to request extra assistance during the screening process.
10. Keep plans flexible. Don't hesitate to cancel if you or your loved one's doctor determines that travel will be overwhelming or medically risky.
11. Be patient. You may hear stories you have heard hundreds of times and need to repeat yourself frequently. Go with the flow.
12. Focus on spending quality time with each other: talking, telling stories, joking and sharing meals — not seeing the sights or having adventures. Those personal moments were the highlights of our trip and the memories we most value.