A Recreation/Activity Professional’s Perspective:Alzheimer’s and its Effect on the Family
Anthony F. Vicari EdS, AC~BC, ADC/EDU, CADDCT, CDCM, CDP
“You cannot control the disease. You can only control your reaction to it.”
~Liz Ayres
Alzheimer’s disease, AD, is a brain disorder that progressively destroys an individual’s memory, ability to make decisions and judgments, and ultimately diminishes the performance of all daily activities. The individual’s behaviors change as the disease progresses fromearly to late stages includingincidents of irritability, anxious feelings, and suspiciousness of others. The person may also experience hallucinations and delusions depending on other factors related to the disease.
According to current studies and on-going research, Alzheimer’s damages the brain long before any symptoms appear. As someone ages, the odds become greater and greater. “ It affects 20 to 30 percent of those who live into their mid-eighties, males and females alike, and it accounts for about half of the cases of dementia at any age.”(Heston, 2010). Seemingly, almost every family unit on our planet will be affected by Alzheimer’s at some point in time. As of today, there is no ‘cure’ for Alzheimer’s; however, there is positive news. The quest in finding a cure to treat Alzheimer’s isa steady and proactive work in progress. Now is the time for all of us to recognize the magnitude of this disease and respond with vigor and support.
As Recreation/Activity Professionals, one of the most important strategies we can offer our residents, with regards to Alzheimer’s,is the promotion of living an activehealthy lifestyle. Providing today’s residents with activity programming and education that support active healthy lifestyles helps ensure that our seniors have the necessary tools to keep their bodies and minds running at optimal levels. According to Shankle and Amen, “If we wait until all of the answers to preventing AD are firmly established before we apply sage strategies, we will already be affected.” (Shankle & Amen, 2007). The key to prevention is not waiting, but taking a proactive role in our residents’ health many years before the symptoms occur. And, just as research indicates, preventative measures are important for a resident’s healthylifestyle, especially with genetic makeup being an initial precursor with this specific disease. Part of our job responsibilities as Recreation/Activity Professionals is serving on Inter-disciplinary Teams providing well researched and proven Quality of Life services and support to our residents and their families. Still, there is growing concern centered around brain health and the effects that Alzheimer’s has; not only on the patient, but the family.
On a personal note, no matter what happens with any Alzheimer patient, the family suffers as well. Added stress and pressure createstension between family members and their loved one. Research indicates that the individual diagnosed with Alzheimer’s disease does not suffer because he/she is oblivious to his/her own actions and feelings.
The caregiver suffers the most, because he/she is essentially “mourning the living.” On a day to day basis, AD patients lose some aspect of their life. This, in itself, is a very painful happening for the family because the patient is dying not by the body, but by the soul. Loss after loss. Eventually patients become dead before they are dead. The patient suffers through a limbo period, because…this is not life; this is not death…then, what is it? (Carroll, 2007).
As the son-in-law of an Alzheimer’s patient, I have experienced, from the outside in, many of the consequences of this disease. My wife’s mother passed from this Earth at the age of eighty-one years old. People from all over the country were praying for our dear mother. It was their prayers, cards and our faith that brought us through the pain. For the four years prior to her passing, Mom demonstratedmany of the symptoms of Alzheimer’s disease. During the beginning and early stages, she created very believable real-life stories. She told my wife that our daughter went into her house, stole her baking sheets, and brought them back to her in the middle of the night. Not only was my wife confused by her mother’s conversation, but she was concerned about her health. My wife immediately made an appointment with our doctor and escorted Mom for a thorough examination including a brain scan. The doctor said that she may have had eight mini-strokes. In addition, the results from the brain scan indicated that she could be experiencing symptoms of Alzheimer’s disease. Not only was this a scary thought, but in our naïve eyes, a death sentence on Mom’s life; a death sentence that no one knows the date, time, or outcome. At this time in our lives, not one of us, my wife, daughter nor I, knew anything about Alzheimer’s disease.
I had just retired from the field of education and was beginning my brand new ‘second career path’ as a Recreation/Activity Professional. My learning curve was truly about to begin.
As the next few years progressed, Mom’s symptoms increased in number and intensity. One of the stories, that we now know was part of the disease process, was a woman going into her home and stealing things right from under her eyes. She insisted that this woman was taking her checks, money, and valuable items. No matter how much we tried to explain that no one was going into her house, she refused tolisten. As research shows, comprehension during the later stages of Alzheimer’s was unrecognizable. She no longer could think abstractly or understand when someone attempted to rationalize a situation. My wife had such a hard time understanding this process because as stated before, she was grieving the living. “Family members…feel sad, discouraged, and alone. They feel angry, guilty or hopeful.” (Mace, 200). My wife, daughter and I continue to experience strong, vivid emotions and feelings regarding the passing of our beloved mother. It is certainly bittersweet. She was and will always be the matriarch of our family; someone who lived her life to the fullest and inspired us to pass the torch of love, kindness and genuine appreciation to the next generation. Alzheimer’s disease is real. The one single emotion that helped me through this entire process was hope. From the moment that I stepped into the role of Recreation/Activity Professional, I felt a sense of peace and comfort. This brand new career ‘fit’ my former professional training and passion. Giving back, where help was needed and making a positive impact on people’s lives, is not only what others needed; it is what I needed!
One of my‘go to’ resources has always been Jolene Brackey’s, Creating Moments of Joy. If you could see my copy of her book, you would immediately notice thewear and tear of each page, and how the front and back covers are barely holding the booktogether! Saying Goodbye is my favorite chapter from the book. “Saying goodbye is never easy, but hopefully I can make it easier. When you are getting close to departing start to make comments that leave them with positive ‘feeling.’ Feelings of assurance. Feelings of self-worth. Feelings of being loved. Feelings they have loved you. Feelings that everything is OK for the moment.” (Brackey, Creating Moments of Joy, 2007, p.268).
Thank you, Jolene, for your insightful words. The Vicari family thanks you.