Jun 13, 2012

Taking Trips

Question: should we stop taking trips because my wife has Alzheimer disease?

By Mal Ernst

One thing that I have been told (by doctors, and many times in the Alzheimer’s Reading Room) is that the patient should continue doing what he or she has always done, to the extent possible.

This means chores (the caregiver should not do whatever the patient can still do), exercising, socializing, playing physical and mental games, eating out, etc.

The reasoning is that, whenever the caretaker intervenes (“helps”, or “protects” the patient excessively) too much, the patient soon “forgets” how to do the task; and it would be very difficult to get the patient to remember again.

As long as patients can reasonably do something, then let them do it; even if they happen to make a few mistakes, unless of course it could be detrimental to their health and safety.

In our case, in addition to the above we have always enjoyed traveling. Considering what we did before and after we were married, we have visited more than three dozen States, lived in nine of them, and travelled to more than twenty foreign countries.

Question: should we stop, just because she has Alzheimer’s and travelling can become tiring and stressful? The answer, in my mind, is a resounding, but qualified, NO!

While every patient will not react the same to a particular situation, I submit the following for your consideration as food for thought.

Just because we both enjoyed travelling a lot in past years does not mean that we can travel in exactly the same way that we always travelled; for example she obviously cannot function mentally as before, she lacks energy and becomes tired and disoriented much more easily, and she cannot organize things, so she needs a lot of loving help and careful planning.

Just as a frame of reference, as best as I can determine my wife is about in the middle of the 5th stage of Alzheimer’s (out of the seven classified by the Alzheimer’s Association.)

I learned my lessons well about travelling during a week’s visit to the Outer Banks last October. The trip from Knoxville (our home) took about 11 hours, counting stops; and, as usual, I made this “easy” trip in one day. I say easy, because I am used to driving 500-700 miles in one day, and I can still easily do 500 miles or more even though she no longer can spell me as a driver.

Well, the problem was that travel is no longer easy for her. She could not get the good nap like she needs while in the car, and when we got there she was VERY tired.

Since we were checking into a strange timeshare, she also got very disoriented; for example, many times confusing which bedroom and bathroom was ours (her sister had accompanied us and shared the two-bedroom unit.) Also, the problem was not just a temporary one; she never did regain her mental and physical equilibrium. We did manage to conserve her energy enough so that we could still sightsee and enjoy some of the things offered in that area, but it really was not a good trip.

Since then we have gone on two other trips; to Florida last Christmas for a reunion with much of the family, and to Georgia and South Carolina in April to see various gardens. While these trips were also tiring, it was not nearly as bad as last October because of my lessons learned, and a good time was had by all.

So what did I do differently; i.e., what exactly were my lessons learned from last October?
  1. What I have always done in the past is to start discussing the trip, and what we might like to do and see, very early in the game so that my wife can provide her thoughts and input. Now I don’t try to get her input, but I do need to get her mentally involved and anticipating what we will do and see, and people we will meet.
  2. Last October she spent several weeks taking out clothes, laying them all around, and then putting them all back, only to start over again in the next day or two; this clearly was agitating her and wearing her out, trying to decide what to take. More recently I have told her to not do anything until the day before we leave, and then I will help her pair up enough clothes for the trip, and help her as to which suitcases to put them in. Notice the word “help”, I do not do it all for her; she still needs to feel being able to be a part of things.
  3. No more long trips with few stops! I now schedule trips to be around six or seven hours per day, including several decent stops (gas, food, and leisurely rest stops; and maybe even an hour or so stop at an attraction along the way.) That allows time for a good night’s sleep, leaving mid morning, a more relaxed trip, and arriving at our lodging in time for her to take a late afternoon nap before supper.
  4. While at our destination I schedule sightseeing or attraction visits to be rather short; it is much better to go for a couple of hours, eat something, have her take a nap, and then schedule something else, rather than trying to do it all at once.
  5. Naps are crucial. At least one good nap a day, or perhaps two shorter ones; she needs to recharge her batteries.
  6. Even when visiting family, she needs alone time (i.e., not a lot of people around) along with her naps. If she spends a few hours with family, that is too much. She tries very hard to be “normal” when around others, and this really wears her out.
I hope that this helps.

Your comments, observations or insight would be appreciated.
Mal is 82; born January 20, 1930. Dean, his wife of 41 years, is 86; she was first diagnosed with Alzheimer’s 3-1/2 years ago. He retired from the Nuclear Regulatory Commission in 1989 and has since consulted for the nuclear power industry, sold residential real estate, been President of several homeowners Associations, and been active in managing activities at several member-owned country clubs. He plays some golf, bowls, and enjoys some yard work; and they still travel and enjoy eating out.

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Original content the Alzheimer's Reading Room