The Shriver Report reveals a compelling connection between Alzheimer’s disease and women: 3.3 million American women with Alzheimer’s and another 6.7 million women providing care for a friend or loved one. By mid-century as many as 8 million women will have Alzheimer’s disease, it is clear a huge Alzheimer’s tsunami is coming at this nation’s women. It is a fact. When most people hear the word “caregiver,” a woman usually comes to mind. Yet, increasingly men are being diagnosed with the disease, and among their caregivers are men, stepping up to serve in love.
The Banner Alzheimer’s Institute paints male caregivers as being more task oriented, saying “their nature is to problem solve.” There are components of the Alzheimer’s journey, however, that we cannot solve. To date, there is no solution to keep it from advancing. There is no solution to amend its fatal course. Sadly, there is a profound lack of solutions for every aspect of life it impacts – physically, emotionally, mentally, spiritually, and socially.
While I can relate to some of the differences painted between male and female, problem-solving is something I see as constant exercise for ALL caregivers. The unpredictable nature of the disease itself challenges us (my family among them) to problem solve again and again. The Alzheimer’s journey is often described as an unpredictable roller coaster with its inherent ups and downs, twists and turns. Music artist Vince Zangaro frames it brilliantly and simply through the eyes of his father. In a poetic article entitled I feel safe, he provides insight to help step away from a problem solving zone and into a comfort zone, for our sake and theirs.
Even in the pain of being unrecognized, Zangaro is able to focus on the nuggets of happiness – as his father sees it: I look to the right, and a man comes up to me and kisses me on the forehead. I don’t know who he is, but I know he loves me and I love him; I feel safe. (Read the poem in its entirety at TheCaregiversVoice.com)
At just 29 years old, Vince Zangaro stepped into the caregiving role for his (then) 62-year-old father. He says, “it is kind of a blur, to tell you the truth, it took me about five years to stop being depressed and negative about my choice to take care of dad.” That is about the time his (now) wife Amy stepped into their lives.
There is no “army of one” in this treacherous roller coaster journey, and unfortunately, there is no formal on-the-job training either. You pretty much take a leap of faith in entering the world of Alzheimer’s with a loved one. You just have to do what is right and necessary and loving. That is paramount. Yet, the isolation can be hard. In a Sunday Conversation with the Atlanta Journal-Constitution, Zangaro acknowledged the sad fact that, “you lose friends who do not understand what you are going through.”
Being catapulted into Alzheimer’s leaves us with the same reality evident in other difficult journeys in life. We cannot always control what we go through, but we can always choose how we go through it. Deciding how to go through Alzheimer’s with my parents took time. Thankfully, we now feel safe among an army of many – from those helping with personal comfort measures for Mom to those backing me in a creating (community) memory cafes.
Vince Zangaro has found comfort in the experience of Alzheimer’s, too.
I have learned when giving dad a hug to have it last a minute longer. After the 60-second mark you will start to see him grasp the moment. It doesn’t always take medicine to help someone you love.” (Read more at the AlzJourney.com)
And, Zangaro has extended the love beyond the walls of his home. For the 4th year, he is managing The Alzheimer’s Music Fest. Zangaro created the festival and partnered with Caring Together in Hope as a means to raise funds for families with limited financial resources, to increase awareness about Alzheimer’s disease/dementia, and to create a community of supports for those families. Learn more and share the project at Alzheimer’sMusicFest.org.
We can always choose how we go through it. What helps you maintain strength and hope?
A Day in the Life of an Alzheimer’s family …
(This article originally published in July 2015 on Hope Matters)