The following blog is written by Betty, an advisor for the Alzheimer’s Association’s National Early Stage Advisory Group, and her travel companion and long-time friend, Renee.
I love to travel! Doesn’t matter where – let’s just go!
My ability to travel has varied throughout my life. As a single parent, my traveling was limited to Mom and Me Scout camp outs where I shared the outdoor adventure with other moms. In my forties, I met and married the love of my life. My husband traveled for a living and I was fortunate enough to travel with him and sightsee or take an excursion on my own.
In my fifties, I began to take trips with girlfriends. My husband no longer wanted to travel and encouraged me to go with them. We haven’t traveled to many faraway destinations, but my cruise to Mexico with one friend, shopping trips to Dallas with another, social and church-related trips with others have all been wonderful! I would not trade these experiences!
Then last year, at the age of 65, I was diagnosed with Alzheimer’s disease. I had begun to notice memory lapses and “distortions” that I knew were not normal. My father, his brother, and both sisters had Alzheimer’s so I knew my chances of developing the disease were pretty significant. I just didn’t expect it to come so early.
At first, I was devastated by the diagnosis and withdrew from all social and family activities for a while. But then, after some time, I decided to fight and to start living the best life I could for the time I had left. I became actively involved with the Alzheimer’s Association and was invited to be a part of their National Early Stage Advisory Group.
I had the privilege of traveling to Chicago for the first group meeting, and brought a dear friend, Renee, as my travel companion. It wasn’t long into the trip that I received proof of how beneficial it was, as a person living with dementia, to have a companion there for help if I needed it.
Unexpected delays and gate changes made me anxious, yet my friend remained calm. I have no idea how many times I asked her what our new departure time was. She remained patient with me and continued to repeat the departure times over and over. Once we arrived at our destination, I followed her through the airport until we were able to find a taxi. At this point, I had mentally shut down, and was so grateful to be able to place the burden of getting us to the hotel on her shoulders.
I know at some point I will no longer be able to take these trips. The ones I will be able to take will be precious memories for as long as I’m able to remember them. I’m taking pictures and buying souvenirs so my husband can show them to me – not to help me remember but to just make me smile.
As an individual living with Alzheimer’s disease, I encourage everyone to take the time now to share travel experiences with friends and family. You never know when these opportunities may end.
I first met my friend Betty through church and bible study. Our friendship grew stronger as we participated in more of the same activities in our town of Longview, TX, and many of these activities presented opportunities for travel.
A little over a year and a half ago, Betty became concerned that something wasn’t right with her cognition, and due to her family history, she thought it may be Alzheimer’s disease. Rather than fret about what might be, she decided to seek a diagnosis. A little over a year ago, it was confirmed that she did indeed have Alzheimer’s. The diagnosis made Betty determined to make a difference and she became engaged with her local chapter of the Alzheimer’s Association and was selected to share her story as part of the Alzheimer’s Association’s National Early Stage Advisory Group.
Betty was invited to come to their headquarters in Chicago for an orientation and to meet her fellow Advisory Group members. She was also asked to bring a travel companion. That’s where I come in.
Navigating a strange city is always a challenge. While Betty was quicker to figure out the Google map, I was better able to find our way back and form a mental map to use in subsequent walks in the area and felt a responsibility to ensure we did not get lost.
Many of the people I met were spouses or other family members of individuals living with Alzheimer’s and their stories and concerns really touched my heart and made me more determined to do what I could in this fight for Betty and all those affected. It also drove home to me that the future would probably not look like the present and that it was so important to cherish what we have now and never lose sight of the person inside.
This trip was special. I got to share a unique experience with a person I care about and support a cause for which I am a strong advocate. I want a cure for this disease, for Betty, for all the wonderful people I met in Chicago, and anyone else affected by Alzheimer’s. In many ways, this was like other conferences we attended together but it was so much more; this was for Betty’s future! Challenges at this point were minimal and my role primarily as companion but I am in this fight with Betty and I will be there with her and ready to meet any travel challenges to come.