Jolene Brackey. 2007. Creating Moments of Joy for the Person with Alzheimer’s or Dementia: A Journal for Caregivers. West Lafayette: Purdue University Press.
Review by Stephen W. Hiemstra
What brings you joy?
One morning I met a woman who had been in a horrible car accident. The accident broke pretty much every bone in her body and the trauma triggered a psychiatric disorder. She approached me in the ward rapping a song featuring me—what she knew of me personally—in real time. As we talked, the stories told were exceedingly dark with tales of abuse, neglect, and sorrow—none of which intersected much with reality. After about 30 minutes of dark tales, I asked her a question—what brings you joy? She brightened up and became sugar and spice and everything nice. It was as if she needed permission to enter that room in her mind.
In her book, Creating Moments of Joy, Jolene Brackey writes:
I have a vision…that we will soon look beyond the challenges of Alzheimer’s disease and focus more of our energy on creating moments of joy. When a person has short-term memory loss, his life is made up of moments. We are not able to create a perfectly wonderful day with those who have dementia, but it is absolutely attainable to create perfectly wonderful moments (13).
Brackey (9-12) writes her journal in 5 parts:
- Understanding the Person with Alzheimer’s, (pages 16-28)
- Powerful Tools That Create Positive Outcomes, (36-76)
- Let’s Talk Communication, (82-126)
- Memory Enhanced Environments, (130-204) and
- Enhanced Moments, (212-318).
The book begins with acknowledgments, advice on using the book, and an introduction. It ends with a conclusion, bibliography, and author introduction.
Alzheimer’s disease is distinguished from other forms of dementia by the fact that the patient’s cognitive ability gradually deteriorates. This deterioration occurs in stages. This deterioration can be slowed, but not stopped by medication. This deterioration can be accelerated by trauma, surgery, and mistakes in medication. Other forms of dementia arise from physical damage to the brain through head trauma, cardiovascular problems, and things like prolonged oxygen deprivation.
We all come to Alzheimer’s disease wanting explanations and wanting to find a cure. Part of this quest is ignorance; part is guilt. Alzheimer’s disease is mostly not understood and research dollars are generally allocated to other diseases. Brackey is accordingly short on explanations and long on making the most of the journey.
Brackey notes, for example, that as the disease progresses, the patient’s apparent age regresses (18-19). They do not recognize their grown children, in part, because they remember their kids as young as when they themselves were younger. Alzheimer’s patients are time travelers. They have good and bad days as their cognitive function comes and goes with energy levels. Physical exhaustion generally leads to a bad day. Patients whose energy levels deteriorate late in the day are sometimes referred to as having “sunset dementia.”
Brackey (22) mentions that Alzheimer’s patients lose their inhibitions. In the ward where I worked, on Fridays they had happy hour when musicians were invited to come and play for the group. The Alzheimer’s residents would sing and dance to the music while other elderly residents were too embarrassed to do either. Lost of inhibitions can be a source of embarrassment, but it can also be a source of joy. Alzheimer’s patients are like children masquerading as adults.
Brackey (162-164) has a chapter on music which deserves more attention. Because Alzheimer’s patients are time travelers, familiar songs–particularly religious music–helps them center on the here and now. Religious music is special because, having been repeated over many years, it is buried very deeply in our memories. It is often the music of our youth and a source of joy. Patients, who could not speak in complete sentences, will sing and clap and suddenly be able to engage in conversation after music sessions. If you are skeptical, try singing the doxology to an Alzheimer’s patient or, if they are African American, sing a Gospel song like “Amen” and observe the response.
In a 1993 film called Groundhog Day, Bill Murray plays a weatherman forced to relive groundhog day over and over. He is in love with a co-worker at the station, played by Andie MacDowell, but has trouble attracting her attention. After a point, he realizes that the groundhog day phenomena allows him to try different ways to woo her heart and he remembers her response from the previous days. After many failed attempts, he finally wins her heart and groundhog day comes to an end.
With Alzheimer’s patients, every day is groundhog day.
Groundhog day is both a curse and a blessing. The curse arises when patients are reminded of past pains and relive them—griefs lived over and over with no resolution. The blessing comes in that as caregivers our mistakes are quickly forgotten and we can try something different.
Brackey reminds us that we can bring sunshine to our patients. We can remember their accomplishments; share in their greatness; and share in their reality (41). We can be the loving family that hopefully they have or maybe they had or maybe never had (36-37). Facility staff must sometimes step in where family members are unable or unwilling to journey.
Brackey’s Creating Moments of Joy is truly best used as a journal. She offers tons of useful advice whose usefulness will not be immediately obvious on reading it the first time. It is best to make a mental note of what was read and come back to it when daily experiences prod your memory. This is a helpful book for anyone caring for an Alzheimer’s patient or trying to relate to one.