Traveling with Dementia

mom going to seattleThis week my mother and I flew to Seattle to visit my sister Chris. It was the first time in the Pacific Northwest for the both of us, and we both had bucket list items to check off: My mother wanted to see a whale, or the coast of Alaska; I dreamed of having tea at the Empress Hotel in Victoria.

Sunday Mom gets her wish. I got mine LAST Sunday, when I took the Clipper Ship Cruise to Victoria for the day. It was every bit as wonderful as I’d hoped it would be … and I hope Mom has a whale of a tale after our excursion, too.

The thing is, we almost didn’t make the trip. The day before we were to leave, Mom’s delicate internal workings kicked up a fuss, requiring several doses of Imodium to get it under control. I remember what her psychiatrist had said on the last visit. “Your mom may be getting to the stage where travel is too difficult for her. People may need to start coming to her, because travel can be disorienting for dementia patients.”

Mom insisted that she wanted to go see Chris. I think that, like many times in life, the prospect was infinitely more intriguing than the reality. However, we started early, left plenty of time for rests, and contacted the airport ahead of time so they would have a wheelchair and attendant ready for every leg of the trip. We got there safe and sound … and though she is sleeping more than usual, she seems to be having a good time. I know Chris and I are enjoying this quality time with her, too.

Here are some things we did that I think makes the difference between a “not bad” trip and a great trip.

  • Don’t over-plan the itinerary … and build in some down time for both of you. The first two days mom stayed with my sister in her apartment, while I took a trip to Victoria on my own. Bliss.
  • Don’t cheap out. Pay for convenience. We got super-cheap airfares on Delta (who is now my airline of choice for traveling with my mother). It cost extra to check bags, but I went ahead and ponied up so I didn’t have to drag everything we both needed through two airports. I also sent a package via Amazon with toiletry products directly to my sister about a week ahead of time. Worth every penny.
  • Keep routines as familiar as possible. Bring a favorite pillow, her favorite bedtime reader, her favorite tea. Let the host know what kinds of supports would be most helpful (commode, shower bench or handles, mattress pads, etc.). Remember to pack a “travel bag” similar to the one you keep in your own car with over the counter and everyday meds, extra pants and sweater, plastic bags, disinfecting wipes, a change of clothes, list of doctors and emergency contacts (including your own cell phone number), copies of medical card and ID, and snacks and water. Put it in the rental when you get to your destination.
  • As best you can, anticipate the unexpected. Tape a small card with your name, phone number, and medical condition information inside your loved one’s shoe, in case you are separated. When you arrange for the wheelchair, you should also alert the airline that you will be traveling with an adult with cognitive impairments, in case he or she has a breakdown at the airport.
  • Be prepared to pay a price for the adventure. Either during the trip or afterwards, you may experience some temporary setbacks (tears, blank-face, belligerence, or a flare up of other symptoms). Your loved one may be happy to see your host, but be uncooperative or demanding with you, her regular caregiver. I’ve learned not to take it personally, but to chalk it up to the loved one feeling tired or overwhelmed. Tomorrow is another day. Make the most of it.
  • Remember to have fun yourself. Have your favorite treat or drink on hand, and let (or even ask) the host family members or pay a sitter to take over some of the everyday chores or just sit with your loved one so you can take a break as well. Put Netflix on your cell phone to keep your loved one (and yourself) entertained during down times.
  • Slow down, breathe deep, and notice the little pleasures of life. It all passes so fast … and the best memories are often found in the things you didn’t plan.

 

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