We didn’t realize we were making memories, we just knew we were having fun.
A few weeks ago, I was sorting through boxes of family photos in the hope of organizing and creating some photo albums. During my search, I came across photos from our trips to Mexico and Hawaii in 2006 through 2008. Although my husband Brian had been diagnosed with ALS when the photos were taken, I had fond memories of our vacations. I recalled how much Brian, our daughter Leah, and I enjoyed ourselves despite his illness. We had never been to Playa del Carmen, Puerto Vallarta, and the Hawaiian Islands, so each trip was magical and a new adventure. Although somewhat challenging to travel with Brian as his disease progressed, in retrospect I am so thankful that we created happy memories during what otherwise was a very sad period.
I can attest to the importance of spending meaningful family time that does not dwell on your loved one’s illness. When we took our 2006 trip to Mexico, our daughter Leah was unaware that Brian had ALS. Brian’s symptoms were barely noticeable to anyone but me. On our next excursion in November 2007, Brian had just retired from his law practice and had told colleagues, friends, and family about his diagnosis. Brian enjoyed our trip to Puerto Vallarta, whether the cuisine, music, or walks on the beach. Fortunately, he had only minor physical limitations.
By the time of our vacation to Hawaii in January 2008, however, we needed to be creative in our approach to vacation activities. We could not do hikes or big excursions because Brian’s balance and mobility were limited. Instead we stuck to walks on paved sidewalks along the beach, driving tours with stops, and lots of wonderful eating. We enjoyed a Luau and took an amazing whale watching tour. Simply put: We had a great time.
We also created some wonderful memories by hosting a family reunion for all the Winer cousins in May 2008. Initially when Brian’s sister Joyce proposed St. Louis as the reunion site, I was unsure whether it was a good idea. It turned out to be a great idea and a much-needed distraction from wheelchair shopping and home modification. Brian and I enjoyed making the hotel and restaurant reservations, hosting a welcome cocktail party at our home, and engaging in good conversation with supportive family. It was the best medicine that could have been prescribed.
My message here is simple: Create a legacy of happy memories for your entire family while you can. It does not matter where you go and what you do; it is the people you are with that matters. With ALS, there is such a small window of opportunity to make memories and share meaningful time together, aspects of life that healthy people all too often take for granted. For an ALS patient, today—not tomorrow—is the best day of one’s life, and it is important to make every moment count.
How has your family created lasting memories? What activities have you enjoyed together? Please share your experiences and thoughts on this or any aspect of caregiving, current or past, in the comments section. Let’s continue the conversation.
Idelle Winer was primary caregiver to her husband Brian, who passed away in 2010 after a 5-year battle with ALS. A retired medical publishing professional, Idelle offers her unique perspective on a variety of caregiving topics in our feature Caregiver Confidential.