Sunday, August 11, 2013

Easier Trails: Travel with People with Dementia

My wife, Clare, and I had been taking wonderful international trips for many years. However, in 2006 Clare started to experience problems during our trips. She was leaving, and sometimes losing, personal items (jewelry, handbag, sweater, jacket) in hotel rooms, restaurants, and on tour buses. She was getting lost in our hotels and on small cruise ships. Restroom visits were becoming an issue because Clare would forget where to meet me afterwards. Conversations with other travelers were sometimes filled with misinformation, and she had periods of aphasia and agnosia. Pre-trip packing had also become a problem. Clare was not following her own packing checklist and couldn’t seem to decide what to pack. She would often pack, unpack, and then repack the same items only to later discover that she had brought many items she didn’t need but had forgotten to pack essential items. Collectively, these were among the first concerns that led me to suggest that she be seen by a neurologist after returning from one of our trips. But Clare’s cognitive testing scores indicated no serious problems. Doctors treated her for stress, anxiety, and depression. Eventually, however, Clare’s symptoms worsened, new symptoms arose, cognitive testing scores declined and, in 2009, Clare was diagnosed with early onset Alzheimer’s Disease (AD) at the age of 63. 

Within a year after Clare’s diagnosis, airplane travel had become too difficult but we hoped to continue taking domestic trips by car for many years. However, Clare’s pre-trip packing routines were making me so stressed out that I didn’t even want to take such trips anymore. Clare now needed several days to pack for a one week car trip, and she was constantly packing unneeded items and forgetting to pack what she did need. She was obviously confused and unable to make decisions on what to pack, but Clare resisted all of my efforts to help and we’d end up in shouting matches. “Stop treating me like a child,” she’d scream. “I may have Alzheimer’s but I can still pack for myself!” Or, “I’m not an idiot. I know I need to pack (that item); I just haven’t gotten to it yet. Stop trying to manage my life.”

On the drive home from one particular trip, I told Clare that this was probably our last trip because I didn’t want to go through the pre-trip packing stress and ensuing shouting matches anymore. This led to a somewhat heated discussion, but I remained insistent that Clare had to let me help her pack or there would be no future trips. I suggested a way that would, hopefully, resolve both the pre-trip packing stress and the frequent hotel room stress when Clare would invariably say that she had lost this or misplaced that item. Reluctantly, Clare agreed to try it “my way” the next time but I knew that we’d be revisiting this topic again in the future. So, not long after we got back home I typed up a summary of our discussion, and we both signed this new “trip packing agreement.” 

Predictably, several months later when it was time to pack for our next trip, Clare had forgotten that conversation, and when I told her it was time for me to help her pack, she started screaming at me. But I quickly showed her our “trip packing agreement” and I read the last paragraph aloud: “The next time we plan to travel, you probably won’t remember that we had this conversation or that you agreed to let me help you pack. So, we’re both going to sign and date this agreement today so I can show it to you when it’s time to pack for our next trip.” Clare briefly glanced at the piece of paper I had in my hand, checking to see we had both really signed it. She stopped screaming and composed herself while I hugged her tightly and said everything would be okay. I reminded her that she was still going to make all the decisions about what she was going to wear … I was just going to help her pack.

We then proceeded to pack together with the changes I had suggested several months earlier. First, I discarded her pre-trip packing checklist and said we’d use my checklist from now on for both of us. Her list omitted several important items and had much redundancy, whereas my list was more complete and was easier to follow. Second, I told her to get me all the toiletries she planned to bring on this one week trip. As she had done with recent trips, Clare brought me enough toiletries for a six month voyage! I placed all the items on the kitchen table and then gave her a zippered plastic bag, telling her whatever toiletries she wanted to take had to fit in that one bag. She “fought with me” over this, but I insisted she had agreed to do things “my way” this time, so I reminded her of what she used and didn’t use frequently. I also helped her transfer shampoo and other liquids and lotions from their large bottles into travel size three ounce plastic bottles. Then I had her pack whatever jewelry she wanted into one small cloth bag. I placed both of our toiletry bags, the jewelry bag, and our medication bag in my backpack. (I had already taken responsibility for packing all of our medications several years ago.) All that was left now was to pack our clothing.

I reminded Clare that we were going to do “modular packing” together … packing separately for each stop on our trip. I began by saying, “OK, we are going to be gone for nine days. So unless you plan to do a wash during the trip or wear items more than once, we each need to pack clothing for ten days … the nine days we plan to be gone , plus one extra change of clothing, just in case.” I then told her to place on our bed everything she thought she might want to wear on our trip … tops, bottoms, underwear, socks and shoes, etc. I’d then say something like, “Okay, we’re stopping at our first hotel just for one night, so I need something for you to sleep in for one night and then to wear the next morning when we drive to ____. “ I’d then say something like, “Let’s start with you giving me one pair of socks to change into the next morning. Now give me one pair of underwear,” and as Clare handed me each item I’d place them in a heavy duty plastic zippered bag … the kind of bags that pillows, blankets and other bedding items often come packaged in. When all the clothing necessary only for that hotel stop was in the plastic bag, I added my stuff, taped a note onto the bag that had the name of that hotel, and would then say something like, “Great. First day of packing is now done. 

I also set aside a cloth shopping bag for items that Clare and/or I might want to wear at more than one hotel … sandals, slippers, etc. That bag remained off to the side. I’d then say something like, “The next night we’re stopping at the ___ hotel and will be there for three days and two nights, so I need two changes of clothing. Please give me …” After Clare’s clothing was placed in a separate zippered plastic bag for that hotel, I’d add my clothing, tag the bag, and we’d go on to pack for the next hotel. When we were all finished, I placed all the zippered bags plus that cloth shopping bag in one large suitcase … but that suitcase never left my car. At each hotel stop, I’d simply grab that one zippered bag tagged for that hotel, place it in the cloth shopping bag, grab my backpack that had both of our toiletry bags and all The zippered bags then got filled with ‘dirty clothes’ and placed back in the suitcase when we checked out of each hotel. 

This system worked like a charm. Instead of days spent packing, the entire process took less than one hour. Instead of being confused with too many choices of what to wear in each hotel, and where things were, Clare had all she needed in that one zippered plastic bag and the cloth shopping bag. At each new hotel I’d place her toiletry bag next to mine in the bathroom and made sure items were placed back in the toiletry bag right after they were used. Fewer items in each hotel room also meant fewer items misplaced or temporarily lost in our hotel rooms. Nothing was now placed in drawers out of sight. Nothing was placed on table tops. Everything was now in one of three places … the zippered clothing bag, the plastic toiletries bag, or the cloth jewelry bag!

Although we no longer fly anywhere, I can offer some suggestions based on our earlier experience and that of others in my support groups. Some travelers with Alzheimer’s will get confused or anxious dealing with the crowds, public address announcements, crowded lounge seating areas, busy restrooms, and procedures for going through security. There are some steps you can take, however, to help minimize or prevent some of that agitation and confusion. 

Consider pre-printing cards indicating that the person has AD, requesting patience and requesting that people speak directly to you, the caregiver. You should carry this card with you at all times so you can “flash it” to airport personnel when necessary, and place a similar card around the person’s neck in the event you get separated. On that card should also be the person’s name, your name, and your cell phone number. A copy of that card is also in Clare’s wallet. Obviously, that also means that you must keep your cell phone with you at all times. Similarly, place any items that might set off the metal detector … coins, money clip, wristwatch, etc.) in a separate zip lock plastic bag to keep in your carry-on piece. Shoes should be easy on/easy off, and think twice before letting a person with Alzheimer’s wear a belt or suspenders that could set off the metal detector.

Also, consider pre-arranging for a wheelchair for the person with Alzheimer’s. You might also consider requesting an attendant of the same sex as the person with Alzheimer’s to remain with you. The attendant can also be helpful to you when using restroom facilities. If an attendant is unavailable, it may be necessary at times to ask a fellow traveler for some assistance. Even if a person with Alzheimer’s hasn’t wandered anywhere … yet … you can never be sure when this may happen. The confusion that may arise in a big, noisy, and strange new situation such as an airport could be that first time. To be safe, you must accompany that person to the restroom even if you must wait outside the door the entire time. On a recent trip, Clare locked herself inside a restaurant ladies’ room and then couldn’t get out. She started banging on the door and, fortunately, I was standing right there. She told me that someone had ‘locked her in” from the outside. This actually happened twice in the same ladies room over the course of two days. If available, always seek out a unisex bathroom so, if necessary, you can accompany your spouse or step inside easily should you suspect a problem

If you can obtain boarding tickets online the day before your flight leaves, do so. Same with curbside check-in. Any steps you can take to allow a person with Alzheimer’s to get into a wheelchair as soon as you arrive at the airport can help that person remain calm and make some of those long airport distances you must walk a lot easier. You should also inform personnel at the gate counter in the boarding area about your situation and request early boarding. And, certainly, don’t ever leave a person with Alzheimer’s unaccompanied anywhere in the airport, not even in a waiting area. And even though Clare is not incontinent … yet … I still carry a complete change of clothing with me at all times in my backpack when we travel, just in case. If your spouse is incontinent, then you should also be carrying extra items with you at all times.

If planning a major trip, consider one with a river cruise or small ship component. This will provide familiar room surroundings for the length of that portion of the trip, eliminate the need for packing and unpacking in different hotels, provide onsite dining without having to travel to restaurants, and provide a familiar restroom situation within your own cabin.

The bottom line for traveling with people with Alzheimer’s is really simple: Expect the unexpected, remain flexible, and keep your sense of humor. You should try to plan and prepare for all eventualities as best you can, but no matter how well you prepare there will almost always be surprises. Build in extra time because, as spouse caregivers know so well, a person with Alzheimer’s can sometimes take a lot of time to do simple tasks. For example, on most days my wife needs about an hour to get up, washed and dressed in the morning. But on her more confusing days, it may take her two hours. For this reason, I never plan trip activities that begin before early afternoon. If you plan on going slowly, you will be less stressed … and less disappointed. And whereas I always try to watch closely to minimize loss of personal items, and my new ‘packing system’ helps a lot (e.g., nothing goes into drawers anymore, etc.), I have accepted the fact that some things are just going to be left behind. I do not blame my wife for her forgetfulness, and as her caregiver I can only concentrate on so many things at one time. So when we travel, anything of significant value now remains at home. If something is lost, we contact the hotels or wherever we feel she may have forgotten the item. On our last trip we ‘lucked out’ and returned to a restaurant to find her sweater. But if an item is lost, it’s lost. End of discussion!

Even though we still ask for two ‘room keys’ at each hotel, there really is no point other than making my wife still feel that she is a responsible adult. I will no longer leave my wife in a hotel room by herself, even if she is sleeping. I’d be afraid she would be very confused if she wakes up and I am not there, and something untoward might happen. She may panic not knowing where I am, she may fall, or she may come looking for me and get lost. I bring a lot of reading material with me, and sometimes I bring a laptop computer. I used to leave the room in the morning just to go to the lobby for a newspaper to bring back to the room. I’d tape a note onto the bathroom sink faucet or onto the door saying I’d be back in a minute. But more often than not, with Clare’s agnosia she would not ‘see’ my notes regardless of where I left them, so I now I stay in the room even when she is asleep. Clare is never alone from the time we enter the hotel until we leave.

And maintaining that sense of humor is also very important. For example, when we have discussions with fellow travelers about trips we have taken, Clare sometimes talks enthusiastically about a country we’ve never actually visited. But on occasion she can still provide details she remembers from books, articles and TV shows with such conviction that she’d almost have me convinced we had really been there! Same with stories about family. She sometimes talks about our three children (we have two), or about our two grandchildren (we have four). I usually don‘t correct Clare because doing so might cause her to be upset and embarrassed. However, if I feel that I can correct her with humor in such a way that I know she will also laugh with me, then I may do so. But what does it really matter when talking with strangers who we will undoubtedly never see again after the trip? Whether I decide to correct her or not, however, I smile.

Regardless of your mode of travel, however, remember these three tips for traveling with a person who has Alzheimer’s:

1. Use one packing checklist to be sure you have all the essentials you need for the person with Alzheimer’s as well as for yourself.

2. Pack all the daily medications yourself for the person with Alzheimer’s, and pack them for daily usage. Small plastic 3” x 2” pill bags that can be bought at most drugstores and big box store pharmacies are perfect for this purpose. You can write on the bags or even apply different colored tape to distinguish morning, afternoon, and evening pill bags. Instead of having to take out pills from various bottles, you can simply hand one pill bag to the person with AD at the appropriate time of day. I also take several extra pill bags because it is quite easy for a person with Alzheimer’s to drop and lose tiny pills.

3. Maintain toiletry bags to use solely when you travel. Each time you return from a trip, take a few minutes to replace or replenish used items.  Then place toiletry bags away until it's time for your next trip.

Published in care ADvantage, Alzheimer's Foundation of America, Fall, 2012, Vol. 8, No. 2, pp. 15-17.  Access at:  http://afacareadvantage.org/issues/ca_fall12.pdf


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