The Invisible Second Patient

As the population of this country, and even more so this county and this island, continues to age, there are fewer diagnoses more feared and more devastating than that of Alzheimer’s disease. Alzheimer’s disease is cruel both to patients and caregivers, robbing its victims of their memories, their mental capacity, and eventually their lives, while leaving family members exhausting themselves caring for a loved one who has become a stranger, does not remember them, and is entirely unable to care for him or herself.

There is an organization on Marco Island dedicated to helping dementia patients and particularly their caregivers with the daily challenges they face, often without support. On October 16, Marco Dementia Respite (MDR) held another of their regular luncheons for caregivers and loved ones, sharing information on resources that are available to help. 

With a panel discussion format, a succession of professionals and caregivers shared their stories with the nearly 150 in attendance at Marco Lutheran Church. 

Caregivers often go down before the person with dementia, retired Marco Island fire-rescue chief Mike Murphy told the group, worn out by the stress of constant caregiving under the most difficult of circumstances. 

“Caring for individuals with Alzheimer’s and other forms of dementia is incredibly demanding, and many caregivers experience significant physical, emotional, and mental strain,” he said. “Caregivers frequently report feelings of anxiety, exhaustion, and burnout. Many feel socially isolated, which can worsen mental health conditions.”

Murphy told the group that the fire department regularly made emergency calls to homes, only to be told by someone who had sustained injuries and clearly needed to go to the hospital, “I can’t go. Who will take care of my spouse?” One study, he said, found caregivers have a 63 percent higher mortality risk compared to non-caregivers. Caregivers are also more likely to develop chronic conditions such as high blood pressure, heart disease, or diabetes. Caregivers are often referred to as ‘the invisible second patient.’

Murphy also emphasized the critical importance of getting the family’s affairs and paperwork in order, “particularly when the person who has dementia was the one who handled the finances.” He included the vital information that “only a Florida DNR (do not resuscitate order) is valid in this state. “A Michigan or Ohio DNR means nothing here. I don’t want to be living like that. Don’t do anything to extend my life.” 

Caregiver Byron Farrell explained that there are 41 different types of dementia, although “Alzheimer’s is the ‘most popular,’ if you can say that. They’re all terminal – there’s no cure yet.” 

He urged those with family members in the grip of dementia to reach out to MDR and take advantage of the services they offer – ‘respite’ is right there in the group’s name. Farrell invoked former First Lady Rosalynn Carter, who said, “There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”

Having dealt with his wife’s dementia for over 20 years, he placed her in memory care two years ago. “She doesn’t know who I am. She’s nice – she knows I’m someone who cares for her,” he said. 

Caregiver Shelly Schwartz choked up when she began sharing her dementia experience.

“Alzheimer’s develops way before you see the first symptoms,” she said, speaking of “repeating stories over and over again, not being able to finish sentences, misplacing things,” whether keys, wallet, food or the car, and progressive loss of vision. 

“He just turned 75. He can no longer talk, no longer walk, and he has trouble swallowing. I don’t want him to die, but I don’t want him to live like this.” And “by the way, I did not leave him alone” to attend the luncheon, she said. 

Genny DiBlasi shared that dementia can come with negative personality shifts. Her husband, she said, “became aggressive, broke things, and caused fires. You get to the point where you have to save yourself. Please reach out for help,” she urged. 

Bud Palmer reported that one treatment that had helped his wife is CBD therapy. “It calmed her tremendously,” he said. He urged others to share their own tips. “If you have any suggestions, ideas, or experiences, please come to us. You are our community.” 

Susan Gardner, whose husband passed away two years ago, said that many of those who helped her in her time of need “are forever friends. Please, please – don’t be alone. Reach out – we are here for you.” 

MDR reaches out to those in need in a variety of ways. The group offers sessions for dementia caregivers and participants every Monday and Wednesday at St. Mark’s Episcopal Church at 10:30 in the morning and provides by appointment a memory assessment center, including a clinical interview and assessment of cognitive and emotional functions, care recommendations, and caregiver education.

Allyson Richards acted as emcee, and her organization, Al’s Pals, cosponsored the luncheon, along with Our Daily Bread Food Pantry, the YMCA, and Marco Lutheran Church. Sandi Sims-Ramage sponsored the meal, which was prepared by chef Barbara Canton. 

Marco Dementia Respite is a 501 (c)(3) tax-exempt organization. For more information, call 239-388-4134 or go online to www.marcodementiarespite.org.