The Face of Lewy Body: To travel or not to travel

by dale on April 16, 2017

bill and rick 2017

Bill and his nephew

In my ongoing series of the “Face of Lewy Body”, this post explores the challenge of traveling with someone with Lewy Body. We’ve had quite the month. I placed my husband Bill (mid-stage lewy body) in respite care for a week while I attended a conference. After returning home, exactly one week passed before we had to decide if we would travel to his sister’s funeral 800 miles away.

At first the question seemed to be, to travel or not to travel to the funeral. He had had considerable trouble adjusting after the respite care. Would he experience another decline if we traveled to the funeral? Suddenly I realized I had to reframe the situation. It wasn’t an either / or question. My son in Denver offered to take a week vacation, meet us in Chicago and help me with his dad. Within a day, I had made all the reservations. Planning a day buffer on each side of our airline reservations worked well because we did encounter some really bad weather. Taking Bill’s wheelchair was a godsend. Despite wanting to go to the funeral, it was physically and emotionally demanding for him.

But, from the moment we arrived at the funeral home, I knew being there was the right thing. Bill was embraced by family he had not seen in years. Throughout the day of visitation and funeral, he frequently asked, “May I please go up to see Joy?”. He was given the time to say good-bye and start to find closure. He asked to return to the cemetery and visit his sister’s grave, next to his parents. It was a journey that I am so grateful he did not miss out on. While there, our son, Bill and I were able to visit many of his favorite childhood places (the beach, his town, …) and shared some wonderful meals together while reminiscing. And, I can’t say enough about the stellar customer service and care Bill received from Southwest airlines.

Lesson learned: Don’t let the diagnosis of dementia stop you. Only you know the significance of a trip or event for your loved one. With serious consideration, proper planning and loving support, your loved one can still stay fully engaged in their life.


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