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Traveling with an Alzheimer’s Patient

Caregivers often ask if an Alzheimer’s patient can travel — to go on vacation, to attend a family gathering, or to relocate. If your loved one is still in the earlier stages, the two of you may still be able to enjoy traveling together, but you will need to take some basic precautions. Whether the trip will be a success depends on the patient himself — how far his Alzheimer’s has progressed, and how easily he becomes agitated or anxious — and on how well the caregiver plans ahead.

WHO SHOULD TRAVEL … AND WHO SHOULD NOT

People with Alzheimer’s disease often have difficulty with new environments, new people, any change in routine, a change of time zone, noise, and fatigue. Therefore it is usually better to travel in the earlier stages of the disease, as your loved one is less likely to become disoriented, agitated, or distressed than he is in the later stages. Someone who requires assistance with bathing, dressing, and toileting will probably have significant problems with traveling, even on short trips. Also, people with behavioral problems will likely have difficulty with traveling. There are a number of signs that may indicate that travel is not a good idea. These include:

* Consistent disorientation, confusion, or agitation even in familiar settings
* Wanting to go home when away from home on short visits
* Delusional, paranoid, or disinhibited behavior
* Problems managing continence
* Teary, anxious, or withdrawn behavior in crowded, noisy settings
* Agitated or wandering behavior
* Physical or verbal aggression
* Yelling, screaming, or crying spontaneously
* High risk of falling
* Unstable medical conditions

Until you know how your loved one will respond to travel, keep your trips relatively short and simple … a single destination, fairly close to home, with a stay of a few days only. If your loved one does not tolerate the shorter trips well, it may not be a good idea to plan a longer trip.

If you need to relocate and you anticipate that the trip will be difficult for your loved one, consider hiring a medical transport service. There are a number of organizations that provide long-distance ground and/or air transportation for persons with stable medical conditions, including dementia. Many will allow a “guest” (caregiver) to travel with the patient. Some will also allow you to take a small pet along, too.

GENERAL CONSIDERATIONS

No one with cognitive impairment should ever travel unescorted. Too many things can go wrong, even if you personally place your loved one on a plane, and have arranged for him to be met at his destination. Flight attendants and customer service representatives are not responsible for watching your loved one. Someone qualified to take care of him should travel with him.

Check the Yellow Pages for travel agents who specialize in planning trips for people with disabilities.

Some airlines may provide a special rate for an escort for disabled person. Be sure to inquire about these special deals.

In general, stick with the familiar. Travel to known destinations that involve as few changes in daily routine as possible. Try to visit places that were familiar before the onset of dementia.

Evaluate options for the best mode of travel. Decide what would provide the most comfort and the least anxiety for your loved one, based on needs, abilities, safety and preferences. If your loved one has never been on a plane, it may be wise to consider driving instead, if possible.

Don’t forget that your caregiving responsibilities continue, even if you are on vacation. It may be advisable to bring someone along who can help you with these duties.

Find out what services are available at your destination by contacting the local chapter(s) of the Alzheimer’s Association.

Avoid elaborate sightseeing trips or complicated tours, which may cause anxiety and confusion.

Have a bag of essentials with you at all times that includes medications, your travel itinerary, a comfortable change of clothes, water, snacks and activities, and a list of emergency contacts. (It’s always good to have an extra set of clothes available in case there is an incidence of incontinence — even if your loved one has never been incontinent before.)

Whenever traveling, be sure your loved one is wearing comfortable clothes that make it easy to use the toilet.

Be prepared to offer a simple explanation if your loved one exhibits unusual behavior … “Please forgive my husband, he has a cognitive impairment.”

Be flexible. Have a contingency plan that will allow you to leave early if your loved one becomes ill, agitated, or wants to go home. Be sure to get trip interruption/delay insurance.

Choose wisely when you plan on telling your loved one about the trip. Talking about it too far in advance may cause anxiety and agitation.

TRAVELING BY AIRPLANE

Flying with an Alzheimer’s patient can be difficult. There is a good chance you’ll run into serious problems with airport security unless you plan ahead.

Be sure to get a letter from the doctor explaining that your loved one has dementia, and carry it with you to show security … maybe even more than one original copy. It should say something along the lines of:

“Mr Smith is under my professional care in the Neurology Department of Suchandso Hospital. He has been diagnosed with Alzheimer’s disease. Due to this dementia, he has considerable difficulty expressing himself and may not be able to understand and follow directions. He may become confused in unfamiliar situations. He functions well with the assistance of his caregiver, Suzy Smith. It is important that they not be separated as he depends upon her for direction and guidance. Any special consideration that can be extended such as pre-boarding or understanding during the screening process will be helpful.
Sincerely,
Dr Jones”

Talk with his doctor about meds to keep your loved one calm, and when to administer them. If your loved one may need something for travel sickness, get a prescription for that, too.

Talk with the airline and with airport security in each airport along the way, well in advance of your trip, about any special arrangements and precautions you should consider. Arrange for an attendant to escort you and your loved one through security and on and off the plane. If you think you can get him to ride in a wheelchair, arrange for one. When requesting assistance, most airlines ask for at least 48 hours advance notice.

Schedule flights earlier in the day, when your loved one may be in the best spirits and you’re less likely to be marooned overnight in case of bad weather or other delays.

If this will be a long trip, it’s worth the extra price to fly nonstop. If a layover is unavoidable, make sure there’s plenty of time between the flights — you don’t want to be running madly for the departure gate, Alzheimer’s loved one in tow, if the first flight is late in arriving. See if there’s a quiet place you can wait, such as an airline clubroom.

Make plans for what you would do if you missed connections, or a flight got cancelled, or — heaven forbid — you got stuck on the runway for hours.

Book your travel well in advance, so you have your choice of seats, and be sure to sit together. If side-by-side seats are not available, talk with the airline. They can usually make arrangements to accommodate you. If possible, find a carrier with planes that have 2 seats only on one side of the aisle — you don’t want a stranger sitting with you — and you take the aisle seat, so your loved one can’t get out without you moving.

If possible, travel in the late spring, summer, or early fall, when it’s less likely that you’ll have flight delays due to weather.

Expect to have your luggage lost. If you are planning an extended trip or a relocation, ship everything you’ll need for your first days ahead of time, so they will be waiting for you at your destination.

Pack lightly. It will be important for you to have a hand free to escort your loved one. If you have packages or need several suitcases, consider shipping them in advance. It will cost a lot less than checking your baggage, and avoid the need to wait at baggage claim for the plane to be unloaded, as well.

Before you leave for the airport, fill a small plastic zip-lock bag with the items that will set off the metal detector — check all pockets, your wrists, and around your necks. Put it in your purse or a carry-on bag.

You should be the one to carry anything important — photo IDs for both of you, your tickets, boarding passes, medicines (enough for several days), a list of medicines (including dosages and frequency), insurance information (including policy number, member name, etc), up-to-date medical information including food or drug allergies, a list of emergency contacts (don’t forget to have your cell phone number on the list, and be sure to have your cell phone with you at all times), and photocopies of important legal documents (living will, advanced directives, POA or conservator papers), etc.

Make sure your loved one has information on his meds, medical condition, any allergies, emergency contacts (including your cell phone, and contact info for his regular doctors), and addresses for you and your families, on his person at all times.

Stick to your loved one like glue in the airports. Even Alzheimer’s patients who are normally very well-behaved, and very used to traveling, can become distressed and disoriented in an airport, even one they’ve been in many times before — they may abruptly start heading off in the wrong direction, leave a line in which you are standing, etc. Have your loved one carry any bags you may have with you, so you can hold onto him — hang onto his belt, if he doesn’t have a free hand. People may look at you strangely, but not as strangely as if you have to start running after him screaming for him to stop.

Make every effort to stay right with your loved one when going through security. Some airports offer family-friendly lanes — use them. They’re not just for people traveling with children.

Keep track of all your loved one’s items that go into the screening machine — and try to keep those to a minimum.

Find out if there will be “family friendly” restrooms in the airports, so you can go in with your loved one. And if there aren’t, be sure to check whether the men’s room has more than one door! Consider asking someone to keep an eye on him while he’s using the restroom. Or take him into the women’s room, and both of you use the handicapped stall together.

Use the bathroom just before the flight to help avoid the need for your loved one to use the lavatory on the airplane. And if the flight(s) will be long enough that he will need to use the plane lavatory in flight, consider how you will handle that. Will he need help? Is there a possibility he’ll lock himself inside and forget how to get the door open again? Take your loved one to the lavatory about an hour or so before the end of the flight, so he won’t need to go after the pilot has announced that all passengers must remain seated during landing.

Have a recent picture of your loved one with you, preferably one showing the way he’s dressed on the day of the flight, so you can show people what he looks like if he does manage to get lost.

Take along plenty of things to keep him busy — games, worry beads, play-doh, a puzzle book, photo album, playing cards, magazines, favorite video and laptop, whatever will keep him distracted and occupied. Try someplace like Toys-R-Us for travel toys and travel activities.

Take along plenty of snacks, and drinks. Dehydration is a risk (and could make his symptoms worse), and food is a good way to redirect an Alzheimer’s patient. Check in advance to find out what you can carry through security, and what you’ll have to buy in the airport.

Carry a blanket and small pillow for comfort’s sake, as they may not be available on the flight.

If possible, have someone waiting for you at your arrival destination — if not family, then arrange for a limo. You don’t want to stand in any lines you don’t have to.

TRAVELING BY CAR

It’s ideal to skip a long journey by car, but when a car trip is necessary, avoid traveling on peak days. It may be better to spend one long day in the car than to break up a trip, because the unfamiliarity of the overnight stop could be upsetting.

Arrange for an extra driver if your trip involves more than six hours of driving time.

Do not drive alone with a person who is agitated. Your safety, as well as theirs and that of other people using the roads, may be at risk. If your loved one becomes agitated in the car, stop at the first available place. Don’t try to calm him while driving.

Alzheimer’s patients have been known to unexpectedly grab at the steering wheel and/or the driver. Consider having your loved one sit in the back seat, as far away from the driver as possible. If someone else is driving, sit in the back next to your loved one, and make sure the driver locks his door so he cannot open it.

Bring something for your loved one to do with his hands, or activities: a puzzle book, a photo album, a textured rubbery ball to hold, playing cards, magazine (pictures to look at even if he can’t read), favorite video, etc.

Play your loved one’s favorite music in the car. Many people with dementia find music calming.

Pack snacks and bottled water. Dehydration is a risk, and food is one good way to keep your loved one occupied.

Have regular rest stops. Check frequently to ensure that all basic needs are met (toileting, hydration, nutrition). Stop as often as needed for comfort’s sake, but stay with your loved one at rest stations, gas stations, and restaurants, since new places cause confusion and may trigger wandering.

If possible, find out if there will be “family friendly” restrooms along the way. An organization such as AAA or AARP may be able to tell you what sorts of facilities will be available.

Never, never, never leave your loved one alone in a car. When the car is moving, be sure to keep the seat belt buckled and the doors locked. (And be sure to have a spare car key with you at all times!)

AT YOUR DESTINATION(S)

Prepare a list of phone numbers and addresses of the location police and fire departments, hospitals, and poison control where you’ll be staying.

It is entirely possible that your loved one will wander when he is in a strange place, so you need to be ready to prevent wandering and also be ready to find him if he does take off. If he isn’t already enrolled in Safe Return, get him enrolled. It would be a good idea to get a GPS locator for him to wear, too.

Have a recent picture of your loved one with you, so you can show people what he looks like if he does manage to get lost. If you have a camera or a cell phone that takes pictures, take a picture of him every day. That way, you’ll be able to show what he’s wearing, as well as what he looks like.

Be sure your loved one has identification with him at all times, as well as information about his Alzheimer’s and how far it has progressed; a list of his medicines; plus a list of emergency contacts, including your hotel and your cell phone number. A Safe Return bracelet from the Alzheimer’s Association is ideal, but a laminated card that goes in a wallet, a purse, or a pocket can also work. Take this step even if you are sure your loved one still remembers his name. In a stressful situation, even the most basic memories can slip away from a person with Alzheimer’s.

If you will be staying in a hotel, plan on remaining with your loved one at all times. Get one large room with two beds, rather than separate or adjoining rooms, and sleep in the bed closest to the door. You might also consider propping a chair against the door when you’re ready for bed, to make it less likely your loved one will wander. Draping a towel over the doorknob may help, too.

When booking your rooms, request facilities and services that designated for people with disabilities. Make sure your rooms will be accessible to your loved one if he has trouble with stairs … or slippery marble floors. Be sure that there are non-slip surfaces in the shower or bathtub, and that your loved one will be able to get in and out of the bathing facilities.

Inform the staff ahead of time of your specific needs, so they can be prepared to assist you. And when you are at the hotel, if you need help, ask for it! The concierge is usually very knowledgeable about activities and services for the handicapped, and very helpful in booking reservations and arranging transportation.

Take along a travel door alarm. While they are designed to warn you if someone is trying to enter your room, they can also be used to warn you if your loved one tries to leave the room. Consider using a childproof doorknob cover.

If your trip involves a multi-city tour, schedule a quiet day with nothing going on but resting before the trip to the next city on the agenda.

While in a given city, schedule as much time alone together, doing quiet things, as possible. Too many people, too much noise and bustle, too much activity, can be very distressing to an Alzheimer’s patient. Try to go to restaurants during off-hours, and steer clear of crowded malls.

People with dementia do better when they know what to expect. A trip can be disconcerting because it throws them into a new and unfamiliar environment. As much as possible, follow the daily routine you’ve established at home (e.g., get up, shower and dress, eat breakfast, take a morning walk, etc.) Wake up at the same time each morning and go to bed at the same time each evening. Keep regular meal times.

Allow for plenty of extra time when scheduling activities. Make sure your loved one has plenty of sleep, too, including a nap during the day if you think he is getting tired. Travel is exhausting, and when people with dementia become exhausted, their confusion worsens and they may become irritable and even combative.

Do not leave your loved one alone. If you absolutely can’t be with him, ask someone else to keep an eye on him, and be sure they understand why you’re concerned.

Pack extra meds, and carry some with you at all times. You never know when something might happen that you’d need them — there might be delays getting back to your hotel, your loved one might drop pills into something too dirty/wet for him to take them, etc.

When you arrive at your hotel room, identify and remove potential hazards and clutter in the room (unplug the coffee maker, hair dryer, etc).

Check out the sink and shower, and be sure you know how they work. If the temperature can be set, do that to help make sure your loved one doesn’t get burned. If the bathtub faucet is one of those that has a switch to change from filling the tub to using the shower, set it on tub to avoid having an accidental flood.

Be sure there is adequate light in the hotel room at night for your loved one to see well enough to move around the room safely. Also, leave a night light on in the bathroom, to help guide him there. Take several night lights with you, just in case the hotel rooms don’t have adequate lighting for your needs.

If your loved one usually starts his day off slowly, find out if the hotels have in-room coffee pots or room service, or take a heating coil and instant coffee along. That way, you can have coffee first thing in the morning, and just putter around for a while.

…And, finally, have fun. Focus on what your loved one can do rather than on what he can’t do. Make plenty of time for activities that are still pleasurable to both of you such as a stroll on the beach or a quiet dinner for two. Even though your loved one’s memory is fading, he can still revel in the present.

WHEN YOUR LOVED ONE CANNOT TRAVEL

If you want or need to go on a trip but you feel travel will be too difficult with your loved one, consider respite care for him at an assisted living center, nursing home, or hospital, depending on the level of care needed. Respite care will provide quality care and meaningful activities, which will make his stay very enjoyable and safe, just as a vacation should be. Contact your local chapter of the Alzheimer’s Association to find out which facilities offer this form of short-term care. Medicare may cover part, or even most, of the cost.

The Alzheimer’s Association may also have grants available to help cover the cost.

A good way to broach the idea of respite care with your loved one is to tell him that he is going on vacation, too.

You can call the facility frequently while on your trip to make sure everything is okay.

9 comments

3 pings

  1. RoseAnn Johnson says:

    Excellent article, thank you.

  2. Shari says:

    Very comprehensive information to pass on. Thank you.

  3. catherine b.costilow says:

    Person goes to day care facility but having trouble controlling her while driving. She will unfasten seat belt and begin walking around in bus. what else can i do?

    1. AlzCarer says:

      Hi, Cathy. This was a new one to me … but it turns out there are many designs for guards that prevent youngsters, loved ones with special needs, and dementia patients from unbuckling seat belts. The design of the best guard for you depends on the type of lock on the seat belt in your vehicle. Googling:

      seat belt buckle guard

      will turn up dozens of hits. Or use that search term on Amazon.com to find lots of different designs and ideas, many with reviews by users.

      Good luck! Let us know if you find something you really like.

  4. Nichole says:

    I am starting to have trouble taking an Alzheimer’s patient to the store or anywhere….when he gets home he doesn’t believe he lives there, and gets very agitated and mouthy….is it starting to get to a stage where he shouldn’t go anywhere?

    1. AlzCarer says:

      Hi, Nichole. As our loved ones sink deeper into Alzheimer’s, they have more and more trouble dealing with noise, crowds, and hustle and bustle. They go into a sensory overload that makes it difficult for them to understand what’s going on around them and how to appropriately respond, and so they get upset and can exhibit all sorts of agitated behaviors. Sooner or later, you will find it difficult or impossible to coax him into leaving the house.

      However, there may be some “compromises” you can make for a while that let the two of you go out together. Choose a time of day when his energy is at its highest and he seems the most alert. If you want just to get out (e.g., without running errands), a walk in a nice park can be very beneficial for both of you. Choose peaceful places with which he is familiar, and likes to visit, and establish a routine that doesn’t vary by much. My husband adored our daily walks by the lake, and started reminding me to get ready hours before time.

      If you need to run errands, do one errand on any given day, and have a couple of days’ rest in between. Choose a time and place where there won’t be nearly as many people around — perhaps a smaller grocery store early in the day, for example. Plan very short outings. Keep yourself calm (easier said than done, I know) while getting him ready and while traveling, use short, simple sentences, and speak in soothing, cheerful, loving tones. If he’s having trouble walking, you might consider getting a rollator or a small, lightweight transport chair that can be easily loaded into the trunk of your car, so he has something to stabilize him when walking and a place to sit when he gets tired. SpinLife.com has a wide selection and provides lots of detailed tech specs. They often have the best prices, too, but once you know what you want, shop around for the best deal. Oh — and he may be more comfortable sitting in the back seat (non-driver’s side) of the car, and maybe even use a car window shade on that side. Many Alzheimer’s patients suffer from motion blindness, a very common manifestation of visual agnosia, and cannot tolerate seeing the surroundings flashing past through the windshield and window next to them. You don’t want him right behind you, however, because he might grab you in a panic. Use surface streets as much as possible, because the high-speed traffic and confusion of highways can be very upsetting.

      And while you are still able to get him out and about every now and then … start gradually getting both of you accustomed to in-home aides. It’s hard to locate really good, reliable aides who understand dementia patients. And if you’re like me, having them in the house is a serious invasion of privacy, and you’ll probably have more difficulty adapting to them than your loved one will. Sooner or later, he will have too much trouble walking and getting into and out of the car for you to take him anywhere, and you won’t have any choice. And you don’t want to start looking for aides at the last minute. I speak from experience.

    2. AlzCarer says:

      Oh!!! and the cardinal rule: never ever ever ever argue. If you get back home and he doesn’t recognize the house, don’t try to convince him that he lives there. You will not succeed and you will upset him. Try a noncommittal response … maybe something along the lines of “I live here and I hoped you might like to visit me for a while.” Or “I need your help unloading the groceries.” (They need to feel needed … even if he only carries one head of lettuce.)

      1. AlzCarer says:

        OK, talked about your post with a very dear friend who was one of the very best caregivers I know, for her dearly beloved Momma. She said:

        “Stores and dementia. Fluorescent lighting, confusion, PA systems, over-stimulation coming from every direction. Big sigh… Just before having to stop taking Momma to the store, I found I could often go through a drive-through and get her a cup of coffee. Oh how she loved coffee. Sipping that would lessen the tension and she’d often be okay by the time we got home. But, eventually, even that didn’t work. It was just too much for her. Hard to accept. Very hard to accept.”

        So there’s another idea for you … if the outing is likely to cause anxiety or agitation, try to make a short stop to do something to defuse the situation on the way home — a special treat, like an ice cream cone, or Starbucks, or a quick visit to a special location.

  5. Mike says:

    Your comments ring very true and I honor your pseaonrl efforts to provide your wife with the best quality of life this disease allows. In the attached article I posted late last year, visiting issues are addressed from my own experiences but I think you’ve hit the nail on the head, so to speak, regarding the value of just being with a loved one and celebrating every ounce of connection with her. Congratulations.

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