“I really want to travel or go on vacation with my family member who has dementia. What do you think?” My response is, “It depends on a couple of things.”
Did the Person Living with Dementia Enjoy Traveling?
This may seem like a silly question, but it is really important. I personally love to BE in different places. I’m not a big fan of the PROCESS of getting there. Especially if my travel involves air travel. My preference is train travel…if the locale is accessible. What this means is if I should reach a point where I am diagnosed with some type of dementia, I would become apprehensive with travel activities.
Many times, we squelch our misgivings or dislikes because we know that the rewards from the final destination outweigh the hassle of getting there. When my children were young, I dreaded the annual family reunion in Sea Isle City, NJ. Nothing against NJ beaches. We lived in Richmond, Virginia. I had to coordinate ferry reservations, travel itineraries (for breast-feeding breaks/diaper changes/potty breaks–none of which EVER happened at the same time) and do 90% of the packing and meal planning. I did not breathe a sigh of relief until we pulled into the driveway of the beach house. And then, I had to coordinate the unpacking. My now-adult children have fond memories of these trips and were surprised to hear of my negative feelings about the actual trip.
If my kids were to put me in a car and take me to the beach somewhere, these old memories and anxieties may surface. I may become upset and want to “go home” or try to exit the car. My kids would be puzzled, “Mom always loved the ocean.” Yup, Mom loves the ocean. She just hated the process of getting there.
Some friends of mine bought an RV and began traveling all over the US as soon as both retired. Twenty years ago. They love this adventure. One is starting to show signs of dementia. In this situation, the traveling piece is fine. She knows every inch of the RV. When they get to their destinations, however, she becomes anxious because the destinations seem unfamiliar.
Honestly figure out if traveling, both the process of traveling and the end-result final destination, was pleasurable for the person living with dementia. If the answer to either is “no,” stop. It would be better to staycation and invite friends and family to come to the person living with dementia.
How Severe is the Dementia?
The ability of the person do to self-care things is a good benchmark for dementia severity. People who can do everything but balance checkbooks, pay bills (correctly), and sensibly food shop are usually in the mild stage. Traveling and vacations should be OK, especially if the destination is somewhere familiar like the lake house or a relative’s place.
Once the person living with dementia needs help with preparing meals and picking out the right clothes, he or she may be in the moderate stage. Here is where travel can get tricky. The person may wake up and forget where he or she is and try to leave. The person may fret and keep asking to go home, so the vacation is not really a vacation for the family member(s).
If the person living with vacation needs help going to the bathroom, it is likely that they are in the severe stage. Family restrooms are popping up all over airports. They are not the norm at rest stops. This is a challenge if the caregiver is one gender and the care-recipient is another. I had a male caregiver use the restroom himself, and his wife had wandered off in his very brief absence! This same caregiver is very creative. He learned that Publix grocery stores all have family restrooms. He planned his travel route based on access to Publix grocery stores and stopped there to access the family restrooms!
The more severe the dementia, the less likely one should travel. Traveling takes a lot of mental energy. Persons with mild dementia have more mental energy than persons with severe dementia. This is why you may see more crankiness and irritability during travel as the dementia gets worse.
What is the Purpose of the Trip?
A better question is, “how important is it for the person living with dementia to be there?” Sometimes, WE want the person living with dementia to attend an event. Weddings, baptisms, bar mitzvahs–these are all happy and wonderful events. We want our family members to celebrate with us. I’ve had family members say, “This may be the last time everyone sees (insert name of person living with dementia).” Not true, these people can visit.
The decision to attend the event depends on the time of day, the size of the event, and the characteristics of the person living with dementia. A 100-person reception at 6 pm in the evening may stress out someone with even mild dementia. A brunch in a quiet restaurant with 10 people may be perfect for someone with moderate dementia.
Funerals are another issue. Spouses should have the opportunity to say good-bye. Again, this decision is informed by the severity of the dementia and (I hate to say this) the quality of the relationship. In one case, I suggested that the spouse with dementia attend the wake (near the end) and stay for the service as long as tolerated. This was after a long conversation with the adult children. In another case, the wife with dementia forgot she was even married, so attending the funeral of a spouse who had faded from memory seemed cruel.
I have also seen family caregivers appease other family members, even though the caregivers knew this was a bad idea. I often help family caregivers with “scripts” to deal with well-meaning but sometimes pushy relatives. We may say it different ways, but the bottom line is that the person living with dementia may not enjoy the event and may even become stressed by the event.
The decision to attend an event is best made considering multiple factors. Ask the person living with dementia for their preferences. Weigh their expressed preferences with their pre-dementia personalities. Consider travel options, such as by car versus by plane. Determine if you can get assistance with both the travel process and with care once you get to the destination. Think about the size of the event, the number of people involved, and other logistics like timing.
Should you decide to embark on a vacation or travel activity, consider all of the ways things could go wrong and have a back-up plan. For example, I always travel with spare underwear in my computer bag in case my luggage goes AWOL. Have a travel bag with medications, wipes, and even a change of underwear in case a bathroom is not easily accessible. If traveling/staying at hotels, consider purchasing a cheap door alarm in case the person living with dementia makes an unplanned exit.
I know I’m not the smartest person in the room. I raised three kids. I also ride a naughty pony who has humbled me on more than one occasion. So, I welcome comments and ideas from my wonderful readers!
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.