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(Ed. note: this is a reprint from an article that first appeared in the May 2011 issue of CNN)
Summer is here, a time when many of us like to travel. Vacation destinations, family reunions, weddings - there are lots of opportunities to hit the road. But for a person with memory loss, even a seemingly routine trip can be challenging and stressful.
People with dementia usually have difficulty with changes to their routine. Add to that new environments, increased activities, changes in time zones, large groups of people, and fatigue, and they will often exhibit problem behaviors that never showed up at home. Many a family has been introduced to first-time episodes of wandering, confusion, aggression, agitation, fear, or inappropriate actions when they take their normally stable and docile loved one out of his or her familiar surroundings.
As you read through these guidelines, resist the impulse to think, "Oh, this won't apply to me, my loved one doesn't do that." When persons with dementia travel, it is safe to assume that their confusion will often worsen during the whole trip. Expect the unexpected. A good rule to follow is, "Plan for the worst, and hope for the best."
Be sure your loved one is carrying identification! A Medic-Alert or Safe Return bracelet is ideal, but also be sure the person's name, your name, and multiple contact information is with them at all times, preferably in their wallet or even (unobtrusively) pinned onto their clothing.
Carry copies of important papers, such as a Health-Care Power of Attorney, insurance information, and an up-to-date list of medications. Think about what someone else might need to look after your loved one should something suddenly happen to you.
Carry small cards with you explaining that your companion suffers from Alzheimer's Disease (whether or not that's the actual diagnosis, it's the term that is the most familiar to the public), and asking that they understand any erratic or unsettling behaviors (you can obtain these from MemoryCare).
A single destination is better than multiple ones. Try to stay at one place for as much of the trip as possible. Ask that family and friends come there to visit.
Avoid discussing the trip with your loved one more than just a day or two in advance so that they are less likely to worry or obsess about it. Do the packing yourself, and keep the suitcases out of sight.
Have the person dress in comfortable clothing that allows for easy restroom visits.
Make the trip itself as short and simple as possible. If driving, plan for a slower pace with more rest stops. Take along plenty of water and snacks, and consider having a quiet picnic lunch rather than stopping at a busy restaurant. Bring along the person's favorite music to listen to in the car. Try not to travel after late afternoon, typically a difficult time for most people with memory loss.
If you are flying, take advantage of airport services such as a shuttle cart to take you to you next gate, and quiet lounges to wait between flights. Be sure the person is wearing very little metal so as not to cause delay going through security. Check your luggage so you won't be burdened with carryons; however, do carry with you a totebag containing extra toiletries, change of clothing, snacks, magazines, games, or photos for diversion, and a sweater or familiar laprobe.
DO NOT leave your loved one alone at any time in public places such as the car, the airport, a restaurant, etc.! If he or she must go into a public restroom without you, stand at the door and, if necessary, call out to be sure everything's okay. Do not visit a restroom for yourself while leaving your loved one standing outside, even if he or she promises to "wait right here." Their memory of that promise is usually fleeting, they'll forget where you are, and will often go off to search for you. Explain to airport personnel your situation and enlist their help if necessary.
Prepare for lots of repeated questions. Get an extra shot of patience before leaving home.
Bring as many familiar items from home as possible, i.e., their usual robe and slippers, toothbrush, bedside clock, pillow, etc. Consider putting up signs at home for Bathroom, Closet, Kitchen, etc., several weeks before the trip, and then bringing them along to help ease the transition to the new space. Take along a couple of nightlights for bedroom and bathroom.
Allow extra time for everything. Bathe, dress, and eat without rushing. Factor in plenty of time for naps and "quiet time," even if it means leaving an event early or skipping it altogether.
If you are staying at a hotel, ask for a room without a sliding glass door that leads outside. Put a chair in front of the room door when you go to bed to deter escape attempts, or hang a noisy bell from the doorknob to wake you in case the door opens. Remember that most initial episodes of wandering occur in unfamiliar surroundings.
If you are staying with family or friends, by all means notify them well in advance about your loved one's condition and limitations. Try to arrange for the two of you to share a room instead of having the person in a room by himself. Plan on attending events as early in the day as possible, and not staying as long. Don't feel that your loved one must participate in everything. A morning bridal shower followed by a luncheon, a wedding, and a reception is too much all in one day. Minimize time spent in large crowds, and provide quiet rest periods between activities.
Don't expect your loved one to remember names of family and friends, and never "test" them or say "Don't you remember...?" Utilize nametags whenever Don't feel disappointed if your loved one doesn't remember details of the event when it's over.
Be flexible and have a plan in case of emergencies. Realize that your loved one has no control over most behaviors, and that you cannot reason, argue, or explain. Know that you may ultimately have no choice but to cut your trip short and come home.
Some families may choose the services of a professional to assist with travel. AV.E Health, Assisted Vacations for Elders, is located right in Asheville, and will custom travel arrangements for those with dementia and/or their caregivers. Contact them at www.assistedvacations.com or 828.273.4323.
One last thing: your loved one isn't the only person to be considered. Caregivers need to assess whether they are prepared to travel with someone who has dementia, to face unexpected and often publicly embarrassing situations, to confront others who may not understand or support the circumstances, and to be constantly aware of their loved one's needs. Don't feel ashamed to admit that you need help. Consider taking along a friend, a grandchild, or even a paid health worker to help with caregiving duties. After all, you want to be able to enjoy the trip yourself without getting over-tired, over-stressed, and overwhelmed. Planning carefully in advance of traveling can reduce the stress on everyone, and can allow both you and your loved one to share and enjoy the experience.
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