CAREGIVER’S CHRONICLE: “This Monster Just Sucks!!!”

Published 1:11 am Saturday, July 6, 2013

By Peggy Cohn, BSN MPH PhD

Cheryl is no whiner.   Most of us think of her as a cheerful, bright, energetic gal who has had a couple of interesting careers and is now “enjoying” her retirement with her husband Rob of some 27-plus years.   Her sunny smile and bounce fool you. Yes, she worked in education and the restaurant industry for years and raised two children, but retirement has involved full-time caregiving.
In 1997, Cheryl’s mother, Ruth, in Florida, cracked a hip and was diagnosed with the first “monster” — cancer.  Ruth had been the homemaker for her husband suffering with macular degeneration and some vascular dementia. Now it was Cheryl’s responsibility to see her parents through the long months until that “monster” took her mom’s life and sent Dad north to live with Cheryl and Rob.  When Cheryl returned with Dad, chaos reigned in her own home.  From the disarray of the house and chores not done, it was apparent that Rob had not been able to manage life well without her. But the household of three moved ahead fairly smoothly with additional help and eventual placement of Dad in assisted living for about a month before he, too, passed away.
Rob retired in the summer of 2001, exhibiting increasing forgetfulness and disorganization. Another monster, Alzheimer ’s disease, had attacked their family.  As the financial manager in the family, Rob had not done important retirement planning and was making significant mistakes on the taxes.  Cheryl took over without so much as a question from Rob. He did take the initiative to join a nicotine intervention study, wanting to “give back” to his community. His participation led to his formal diagnosis of Alzheimer’s in 2005. For the next six years, his mental changes were modest, but since 2011 he has “really gone downhill.”
So what is this life like for “best friends” as Cheryl sees their relationship? It is “a kick in the stomach every time I see some other loss. It rips me apart. It blows my mind. His sons are all in denial and cannot even visit. Daughter Mary is a great consolation, but she has her own family and an ill mother-in-law to care for.”
Fortunately, Cheryl has had the good sense and strength to find a geriatric therapist who has guided her through the emotional and practical roller coaster of her broken-hearted marriage. She wants to do everything she can for Rob but often forgets some basic guidelines such as guiding an activity only one step at a time or suggesting choices between only two alternatives at the most.
“How can I remember all the tricks all the time?” She cannot. Humans, even the most caring and devoted, cannot attend so carefully all the time, but with strong professional guidance, Cheryl is now seeking structured support from both paid caregivers and Rob’s reluctant sons. She knows she has to stay mentally, emotionally and physically healthy because this “Alzheimer’s monster just sucks!” It drains the brain of those with the disease and the souls of their caregivers. Despite such loss, Cheryl and Rob’s love remains strong.