Dimensions of Dementia
Traveling with a loved one who has dementia can be stressful. Whether it’s by car, by ship, or plane, many pitfalls exist. Planning and preparation can help, say the experts. But despite preparation, crises can happen and I’ve experienced a few as a caregiver traveling with my husband.
We were not in our home airport but had gone through security without a problem. Then Tom needed to use the men’s restroom. Telling him to wait for me when he came out, I dashed into the adjacent women’s room struggling with our carry- on luggage. When I came out he was gone. The next man going to the restroom checked for Tom at my request but no Tom. Not spotting him visually either, I panicked. When the closest uniformed person suggested paging him, I did, describing what Tom was wearing in case he didn’t hear the page. Fortunately someone was listening and identified him. The pager informed me that Tom was found but had gone out of security. What a relief when we connected again.
Today there are more services available for airline passengers. The family or companion bathrooms are a huge benefit when traveling with someone who needs assistance. I’ve also found the TSA’s Pre-Check a boon, as there is practically no waiting in line. This would have been great when traveling with Tom. He would have appreciated not having to take off his shoes, jacket, and belt. The laptop and compliant liquids can stay in the carry-on. An application form can be filled in online and taken to an interview office. Fortunately, there is an office at Southwest Florida International Airport in Fort Myers. My interview took ten minutes with no waiting line and I paid $85 for five years. Allow several weeks to receive the approval.
In 2011, the Transportation Security Agency launched TSA Cares, a new helpline number designed to assist travelers with disabilities, medical conditions, and special circumstances prior to going to the airport. By calling the TSA Cares number, 855-787-2227, travelers can ask questions about screening policies and what procedures to expect at the security checkpoint. The TSA number is operative weekdays from 8 AM to 11 PM EST and on weekends and holidays from 9 AM to 8 PM EST, according to the TSA Cares online site.
At the airport, travelers requiring special accommodations or concerned about the security screening may ask a TSA officer or supervisor for a Passenger Support Specialist who can provide on-the-spot assistance. See information about disabilities and medical conditions at the Transportation Security Agency online site that also covers how to handle medicine and other aids for health conditions. A TSA Notification Card is also available at this site and can be printed off and filled in with information to hand to the security officer.
Although none of these aids were available when Tom and I were traveling, the wheelchair was. Once Tom agreed to use it, we would be quickly and efficiently helped through the screening process and could find our passenger seats ahead of time, a benefit for helping him relax before the flight.
Traveling by ship may be an easier option for those with dementia and their companions, but it is a big change in both environment and routine. In the early mild cognitive impairment stage of Tom’s dementia, we took a cruise to Alaska with several friends from our church. Boarding the ship in Vancouver, we were excited about the prospect of seeing wild salmon, seals, and whales. I expected Tom by the second day to find his way around the ship. After all, he was an old Navy guy. When I stopped to browse at one of the onboard shops, he went on to our room, or so I thought. Our friends found him wandering trying to find me. It was an awakening for me, my denial in seeing his decline until I could not avoid it. For the rest of the voyage we were joined at the hip.
Traveling by car is an option but it may be exhausting for the caregiver who does all the driving, navigating, and decision making, and there may be other issues. On a trip from Utah to Colorado after visiting several national parks, Tom wanted to drive. I had discouraged this on the trip to the parks but finally gave in on a two-lane desert road after seeing no other cars. Checking with Tom about the driving, I found he was keeping us on the road by lining up the sticker on the left windshield with the road’s median strip, a scary response. I asked him to pull over and drove the rest of the way. That was the last time he drove.
The Alzheimer’s Association offers ten caregiver tips for traveling with Alzheimer’s companions, applicable for any mode of travel. They are:
1. Carry important documents and medications. Do not check, but carry with you medications and documents, such as emergency contact numbers, and physicians, your insurance information, and travel itinerary.
2. Be sure your loved one is wearing an identification bracelet. This is especially important for seniors who may wander. If you do not have an ID bracelet, put their name on their clothing and be sure they have your number and a list of medical conditions in their wallet.
3. Keep surroundings as familiar as possible. People with Alzheimer’s have difficulty in new environments so try to bring familiar things from home on your trip (i.e. blankets, pajamas, and pillows). Try to keep your routine the same to avoid confusion.
4. Limit connections and layovers. Try to take a direct flight to your destination to avoid a tight connection, further distress, and a missed flight. Many airlines will allow you to pre-board which will give your loved one more time to adjust to their new surroundings.
5. Keep travel time to less than four hours. If your drive or flight is longer than four hours, be sure to have at least two caregivers present. Bring photos and games to try to keep your loved one busy.
6. Consider staying in a hotel rather than with relatives. A hotel can give your loved one a calm place to go when the trip becomes hectic. They may be able to stick to their routine better in a hotel. In addition, some family members may not be familiar with Alzheimer’s and might not know what to expect. Be sure to make the hotel staff aware of any special needs in advance.
7. Allow extra time. Whether making a flight or driving in a car, keep in mind that your loved one may need extra time to be comfortable in their new surroundings. Be prepared to be patient with them and allow plenty of time to make travel less stressful.
8. Set realistic expectations. People with Alzheimer’s need consistency so it is often easier to travel with someone in the earlier stages of the disease. If your loved one exhibits delusional, disinhibited behavior, physical or verbal aggression, has a high risk of falling, or has unstable medical conditions, it may be a better idea to find summer fun locally.
9. Create an itinerary for emergency contacts. Also distribute it to family and friends while keeping a copy with you at all times. The itinerary should detail your flight numbers, travel times, emergency phone numbers, medication needs, and any other pertinent information. Keep it easily accessible.
10. Consider hiring a medical transport service. If your travel needs are imminent and you cannot leave a loved one in respite care but anticipate travel will be extremely difficult, consider hiring a medical transport service. These professionals can provide ground and air transportation and many will allow a caregiver or small pet to accompany your loved one.
If I’d known all these things when traveling with Tom, our trips would have been less stressful for both of us. So, make a plan, be prepared, and learn all you can from online sites or other travelers. My parting tip: always bring good snacks that you both enjoy like apples, nuts, energy bars, and cookies. Happy travels!
Shirley Woolaway has an M. Ed. in counseling and worked in journalism, in business, and as a therapist in Pennsylvania. She has 25 years personal experience with dementia as a caregiver for family members with Alzheimer’s disease, and nine years as the coordinator of an Alzheimer’s Association memory loss/caregiver support group, earlier in Pennsylvania and now on Marco Island. We believe that Shirley’s insights will prove helpful to many of our readers.
For help on all aspects of Alzheimer’s disease and other dementias call the national Alzheimer’s Association confidential, 24/7 helpline at 800-272-3900 or the local Bonita Springs office at 239-405-7008 for care consults and support group information. Also helpful with local educational programs, workshops, and support groups, is the Naples Alzheimer’s Support Network, 239-262-8388.