It was approximately 20 years ago when my mother Theresa, who preferred to be called “Tess,” first started showing signs of dementia. In the early 1980s, many older adults who demonstrated such symptoms that we now know as Alzheimer’s disease or a related dementia were often categorized as having “organic brain disease” or “senility.” Alzheimer’s disease was emerging as a defined medical entity and was no longer considered a normal part of aging, as previously thought.
As a family, we had witnessed an abundance of the typical short-term memory and judgment problems characteristic of the early stages of a dementing illness. In response to our collective sense of impending doom, my two brothers and I decided to take Tess and our father, Gus, her husband of more than 40 years, on a family trip to Germany and Austria. Things started out well, but soon after our arrival on foreign soil we noticed a worsening of her mildly confused state. Tess was often anxious, and despite our urging to change up her look, she proudly walked the streets of Germany each and every day in the same yellow embossed polyester pantsuit as if she were purposely out to revive a ’70s fashion trend. In addition to taking in all the standard European sights there were to see, in Tess, we saw the beginnings of that typical gaze off into space and an increased reliance on our father to answer even the simplest questions. While there were many pleasant memories on the trip, what I remember most vividly was an emotional meltdown in response to misplacing an inexpensive necklace, a catastrophic reaction that was the inevitable result of removing Tess from her familiar environment, despite our good intentions. Almost immediately after our return home, I made an appointment for a formal dementia evaluation where we received the somewhat expected, yet still devastating, news of probable Alzheimer’s disease. Being the nurse in the family, I took the lead in accessing all the information I could find about the disease, much of which came from one of the few resources at the time—the Alzheimer’s Association. I also promptly ensured the preparation of health care proxy documents, because Tess always clearly stated she would never want heroic measures to simply prolong her life. We then embarked on that inevitably long sojourn of watching a previously active, productive, and fun-loving woman decline in memory, judgment, zest for life, and ultimately, the ability to perform even basic self-care tasks without some assistance.
Mary (the author) and her mother Tess, when she was well. Photo courtesy of Mary DiBartolo.
A devout Catholic, Tess incessantly inquired as to when she would be going to church. As my brothers and I took turns visiting periodically from afar to check in at home, we quickly discovered that it’s the little things that can wear a caregiver down. My father had an especially hard time delivering any kind of therapeutic lie to assuage her enduring concerns about Mass. His best weapon to maintain sanity most days was to stay busy in their usual routine, along with an occasional dose of ignorance. My brothers and I took turns providing Gus with some well-deserved respite from Tess to re-energize. While she was never delusional and much too fearful of wandering out into unknown territory, she did have significant depression that her physician addressed with the limited arsenal of antidepressant medications that were available at the time. She rarely became agitated during waking hours; instead, such behaviors manifested during the night. My father reported that his time in bed with her was like sleeping with a “Mixmaster.” Caregiving was taking its toll.
At the same time, Tess’ older sister Margaret, who had never married and lived alone in a nearby neighborhood, was demonstrating similar symptoms with an agitated twist. After months of struggling to manage her at home, my father came to Margaret’s rescue and moved her in with him and Tess. The arrangement began swimmingly at first. The repetitive conversations that transpired between Tess and Margaret about church and other lofty matters afforded my father a well-deserved reprieve. After 2 years, the idea that began as a stroke of genius suddenly deteriorated when 80-pound Margaret punched Gus in the face with what is forever known as “her mean left hook.” A few weeks later, Margaret was moved into an assisted living facility, another seemingly good idea, until she attempted to fight off two male nursing attendants in the parking lot within 30 minutes of admission in a valiant effort to catch a cab back home. Because she could not stay there against her wishes and was not deemed legally incompetent, we were forced to move her back to her home. We quickly arranged live-in companions that her retirement funds from 40 years working as a telephone operator had afforded her the luxury to do.
Tess, wearing her favorite yellow pantsuit, and Gus. Photo courtesy of Mary DiBartolo.
After about 7 stressful years of caring for Tess at home, Gus fell from a ladder (presumably out of sheer exhaustion) and injured his back from of all things—hanging curtains. On bed rest for 6 weeks, he was not able to care for Tess at all. Our only choice was the “crisis” long-term care placement of Tess, which I, as a health care professional, vowed would never happen. During the 3-week period when we waited for a bed to become available, we moved Tess to Margaret’s house with her companion as Gus continued to recuperate. Tess and Margaret were back together again, discussing church again… and again. When the day finally arrived to admit Tess to the nursing home, I relieved my father of the difficult task of taking her there. I still remember walking her to the facility from the parking lot when in a surprising instant of lucidity, she stared straight ahead and said, “I can’t believe you are doing this to me.” Although those words felt like a dagger going through my heart, I forged forward knowing that it was indeed time.
Margaret (left) and Tess photographed with Mary’s sons. Photo courtesy of Mary DiBartolo.
Tess did well for the first few months, making quick friends with her roommate who also had mid-stage dementia. When Tess was not strolling hand-in-hand with her newfound friend, she seemed to enjoy my father’s daily visits and the activities the facility had to offer, especially those related to music and dancing—her favorite pastimes in her now much-removed previous life. We attempted to bring her home for Easter after she seemed sufficiently settled and quickly realized it was another terrible blunder. At the same time, her anxiety and depression worsened so much that I had to stop taking my small children to visit her. She was often so distraught, she frequently threatened to jump out the window. Instead of seeing her in her favorite yellow pantsuit and the other outfits she enjoyed, she wore only generic sweatpant sets because they were easy to change into, given her increasingly frequent episodes of incontinence. She was more and more confused, anxious, and helpless, a mere shadow of her better days.
Her length of stay at the nursing home was uncharacteristically cut short by a diagnosis of a serious heart valve defect. I still remember the moment when the physician telephoned me to deliver the news—that without surgery (which was not a feasible option given her condition) she would probably not live more than 6 months. There was a split second of silence when we both recognized that this could be a blessing. In 1997, 2 days short of her 1-year anniversary in the nursing home, my mother died very peacefully in her sleep from a heart attack, as predicted. Although her quality of life was marginal at best, she still knew who my father was, and I was ever so grateful that he was spared the heartbreak many caregivers face when Alzheimer’s patients live until the bitter end. Initially you mourn the loss of a faithful spouse and wonderful mother even though you know that you lost the true essence of that person some time ago. My brothers and I focused our efforts on helping our father deal with the huge void in his life. We even convinced him to take a long overdue vacation to visit his son in Florida with his grandchildren. Those plans, however, came to an abrupt halt when Gus was diagnosed with a particularly aggressive form of bladder cancer. Despite radiation, which turned out to be purely palliative, he quickly deteriorated and passed away just 9 months after Tess. I moved him in with me during his final weeks and could see in his eyes that he had succumbed to his cancer and simply wanted to be with his wife. In stark contrast to Tess’ last few months, he was very appreciative of my efforts to care for him and was lucid until the day before he died.
It has been almost 14 years since Tess’ death with Alzheimer’s disease, although it seems like decades ago as I struggle to remember my mother when she was well and her “real” self. Alzheimer’s disease and related dementias steal memories not only from the victims, but from their loved ones. We tend to forget that caregivers continue to heal long after the actual loss. I still feel both sadness and anger about what the disease took from me, having to make what seems to be an extraordinarily purposeful effort to remember my mother in happier times when her last few years with dementia tend to rear their ugly head instead. In fact, on the rare occasions when my brothers and I can get together, we make it a point to remember the good times we had with our mother prior to Alzheimer’s disease. Photos can be important reminders of the person she was for the majority of her time on earth; luckily, we have a small suitcase full of those pleasant reminiscences that somewhat overshadow the more disturbing memories of her later years. We also have enough stories to fill a book detailing the various trials and tribulations we experienced along the way and how we frequently relied on humor as a strategy to make the best of certain situations.
We often remember the periodic “moments of joy” we created that can be so vital to the mental health of both the caregiver and the person with Alzheimer’s disease (Brackey, 2007). We also fondly remember my father after he was forced to assume some unlikely domestic roles as my mother declined in function, particularly the great strides he made in cooking and baking. We still chuckle about the occasions where he would proudly serve a cake he had baked, not to mention the times I actually found myself exchanging recipes with him. Most important, we continue to take solace in knowing that, as a family, we did the best we could to care for our mother, and at the same time supported our father as he persevered in the demanding caregiver role.
It was also approximately 20 years ago when I attended one of the early annual conferences at Johns Hopkins University that focused specifically on Alzheimer’s disease and dementia as part of my new leadership role at a long-term care facility. I clearly recall the prediction by some of the top researchers in the field that in 5 to 10 years, we would have a cure for this menacing disease. I was cautiously optimistic knowing its prevalence in my family. It has been quite some time since that initial pronouncement, and many experts agree we are still years away from any definitive treatment, cure, or prevention. At the same time, the Alzheimer’s Association (2011a) reminds us of the staggering numbers associated with what they now call an “epidemic”: At least 5.4 million Americans are currently diagnosed with Alzheimer’s disease; every 69 seconds someone in the United States develops the disease. It is now the sixth-leading cause of death in this country and the only one in the top 10 that cannot be prevented or slowed. After witnessing firsthand the toll Alzheimer’s disease takes on unsuspecting families and facing the possibility that I and the other estimated 14 million Baby Boomers may also develop these symptoms in the not-too-distant future, this less-than-hopeful news takes on a new meaning and creates a sense of urgency. Additionally, I am now faced with reliving to some degree the regrettable experience as my husband’s father has been recently showing signs of dementia. Although somewhat removed as an “in-law,” I am very much aware of the impending struggles and difficult decisions that my husband and his siblings will soon face. I am reminded of how far we have yet to go in curing or preventing this dreaded disease. The handful of cognitive-enhancing medications that resulted from the cholinergic hypothesis have modest effects at best and do nothing to alter the actual course of the disease (Whitehouse, 2009). Alzheimer’s disease remains what is fittingly called by Ronald Reagan’s daughter in her book as “the long goodbye” for most families (Davis, 2004).
While researchers continue in their quest to untangle the complexities of the brain, caregivers continue to fight the good fight. Fortunately, great strides have been made in accurate diagnosis and, more recently, a significant revision of diagnostic guidelines has identified an early “preclinical” stage believed to occur 10 years before symptoms of dementia are observed (Sperling et al., 2011). These updated criteria, which incorporate research advances from the past 3 decades, reconceptualize Alzheimer’s disease as more of a process along a continuum which, in turn, could lead to the identification of biomarkers and possibly pave the way for more effective treatments (Alzheimer’s Association, 2011b). At the same time, some experts express concerns about the current state of Alzheimer’s as a disease concept. They argue that its overlap with “normal” aging, mild cognitive impairment, as well as vascular and Parkinson’s dementia, complicate the picture even further (Whitehouse, 2009). One thing is certain: There are now considerably more resources for caregivers. One of the few books available early on, The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life (Mace & Rabins, 2006), is still regarded as a must-read. Now hundreds of other books are available, in addition to countless articles and online resources. We are also equipped with more effective strategies to deal with the enduring challenges of dementia care. Research-based models of care have evolved to guide informal caregivers in this challenging role and serve as a fundamental framework for facilities specifically designed to care for patients with dementia. It is essential that gerontological nurses and health care providers continue to educate and support both lay and professional caregivers in the fundamental goal of providing informed, respectful, and person-centered care to those with dementia until the end of their lives (Steele, 2009). In the absence of any definitive treatment, prevention, or cure for the foreseeable future, this focus on enhancing quality of life for patients with dementia through evidence-based and compassionate care continues to be the most appropriate and clinically sound approach.
- Alzheimer’s Association. (2011a). Alzheimer’s facts and figures. Retrieved from http://www.alz.org/alzheimers_disease_facts_and_figures.asp
- Alzheimer’s Association. (2011b). New diagnostic criteria and guidelines for Alzheimer’s disease. Retrieved from http://www.alz.org/research/diagnostic_criteria/overview.asp?type=homepageflash
- Brackey, J.A. (2007). Creating moments of joy (4th ed.). West Lafayette, IN: Purdue University Press.
- Davis, P. (2004). The long goodbye: Memories of my father. New York: Random House.
- Mace, N.L. & Rabins, P.V. (2006). The 36-hour day: A family guide to caring for persons with Alzheimer disease, related dementing illnesses, and memory loss in later life. Baltimore: Johns Hopkins University Press
- Sperling, R.A., Aisen, P.S., Beckett, L.A., Bennett, D.A., Craft, S., Fagan, A.M. & Phelps, C.H. (2011). Toward defining the preclinical stages of Alzheimer’s disease: Recommendations from the National Institute on Aging and the Alzheimer’s Association workgroup. Alzheimer’s and Dementia, 7, 280–292. Retrieved from http://www.alz.org/documents_custom/Diagnostic_Recommendations_Alz_Preclinical.pdf doi:10.1016/j.jalz.2011.03.003 [CrossRef]
- Steele, C.D. (2009). Nurse to nurse: Dementia care. New York: McGraw Hill.
- Whitehouse, P.J. (2009). Can we fix this with a pill? Qualities of life and the aging brain. In Ballenger, J.F., Whitehouse, P.J., Lyketsos, C.G., Rabins, P.V. & Karlawish, J.H.T. (Eds.), Treating dementia: Do we have a pill for it? (pp. 168–182). Baltimore: Johns Hopkins University Press.