If you travel with someone who has been diagnosed with dementia for any length of time, you will occasionally be asked, “Where are we going?” Jim asks me that question anytime we get in the car and ride for more than 30 minutes – especially if we are on the interstate. There is a level of stress in his voice and he is obviously concerned that he has no control over what is happening to him at that moment. I am always anticipating the question and ready with an answer that typically goes something like this: “We are going to visit cousin George, who asked us to please come for a day as he needs our help. We will go back home tomorrow. Is that OK?” This kind of answer calms Jim down and he says, “OK.”
My answer to this question is always similar and “justifies” our trip with reasons like, “We need to go to a special family event – they want us to be there,” or “So–and-so has this problem and I need to help them and I really want you with me,” or “We have to go make a repair at our condo.” The common thread to all the answers is that I end it by telling Jim when we will be going home and ask him if he is OK with it all. I usually tell Jim we will go home within a day or two, even if that is not the case. For Jim longer than a day or two is just too far off, so I try to keep the answer in terms he feels comfortable with. Depending on how long the trip is, Jim will ask the question several more times. The answer is always the same and Jim is always comforted when he knows we will be going back home again soon.
Jim was diagnosed with dementia 15 years ago, so he is long down the road with this disease. He is probably beyond the point at which most dementia patients have already stopped traveling. In fact, his doctors cannot believe we still travel anywhere, but by God’s grace, we are still going. This year alone we have taken trips to Chapel Hill, Atlanta, the North Carolina mountains, two trips to Charleston and three trips to Virginia. Beach – about one trip a month. Once we’ve arrived at our destination, it usually takes Jim about three hours to relax and feel comfortable. But once we have been there for a day, he is usually fine and has forgotten we are not at home. This has been a pretty reliable pattern for a few years now.
continuing to be together and do things together is the real motivation
As long as I limit our travel time (a six-hour drive is about the maximum for us) and I am prepared with the answer to that inevitable question during that time, Jim can get past the “where–are–we–going” anxiety and we can both have a trip we enjoy. In fact, the important part of the answer to that question is that wherever we are going, we are going together. And continuing to be together and do things together is the real motivation behind the very special care Jim has received the last four years.