I was sitting at lunch with a colleague when I got the call. “I need to talk to you about your mom. She’s not fitting in.” Of course she’s not fitting in. She has dementia. Our exchange was brief. I asked her why, and then I got angry: You met her at the psychiatric hospital, you read her paperwork, you accepted her knowing every last grisly detail… you knew everything! After hanging up the phone, I walked back to the table thinking, “Not again.”
Behaviors stemming from Alzheimer’s disease or other dementias like Frototemporal dementia might mean placement in a traditional assisted living facility will be difficult, if not impossible. And even those facilities that claim to deal with dementia or Alzheimer’s-related behaviors don’t. At least that’s been my experience.
Since 2009, my mother has been asked to leave two assisted living facilities and one group home — all of which were licensed to deal with dementia/Alzheimer’s patients (one place boasted about the specialized dementia training they gave their caregivers) and, in theory, her behaviors — and spent time at two geriatric psychiatric hospitals, where she was “stabilized” with drugs including, lithium, depakote, zyprexa, and the list — quite literally — goes on. One doctor even wanted to perform electroshock therapy, claiming her behaviors were the result of bipolar disorder (she was in her early 70s at the time and had never exhibited bipolar behavior). Being asked to leave a facility was, by far, one of the most stressful, awful, even embarrassing experiences of my life… How could this have happened? Where are we going to go? What do I do? Did this really have to happen on a Friday? Unfortunately, one of the lessons I’ve learned over the years is that somehow, you must stay one step ahead of the disease. I confess, despite knowing this, I’ve failed miserably. I can’t keep up with it. It jumps around, it’s quick… it’s unpredictable.
Ask me if I feel like I’ve made my mom’s life better and I’ll tell you no… but I did the best I could with the knowledge I had at the time.
Fortunately, I’ve crossed paths with several incredibly smart people along the way. Did I mention this disease involves networking? People who are not just elder care experts, but folks who are on the front lines — some of them have even lived through it… they not only see, they know how difficult it is for families to survive, day-in and day-out. They know that dementia is not always a quiet, peaceful disease. And they know that sometimes, families have to choose between bad and worse. “Selecting an organization is not easy,” says Tena Alonzo, the Director of Dementia Research at the Beatitudes Campus in Phoenix, AZ. “Often, family decision-makers are called on to select the organization quickly. This can be a recipe for disaster and one that contributes to extreme remorse and guilt.” So, when it comes to finding an assisted living unit for a behavioral parent, what questions should you ask to hopefully avoid placement in the wrong facility? Below, Tena shares her suggested questions:
- Describe how you will get to know (name).
- What is your policy on personalizing daily routines? Can (name) sleep when they want or need to? Can s/he eat when hungry?
- What is your staff-to-person ratio, and what is the average length of employment for staff members, overall?
- What is your policy for communicating with (name’s) decision maker?
- How will your organization honor (name) wishes for spirituality and end-of-life?
One last question:
- Since 90 percent of people with dementia experience changes in personality and behavior, how does your organization address challenging dementia-related behavior?
“If the answer is, ‘We use medications or we discharge them to the hospital,’ RUN,” says Tena.
According to Tena, the appropriate answer would be:
“Dementia-related behavior is part of the dementia process. We know that the person communicates through their actions, and we will do what we can to interpret the meaning of the person’s actions and take care of whatever might be triggering the dementia-related behavior.”
She says, “this basic method for addressing dementia-related behavior separates the organizations that provide quality dementia care and service and those that don’t.”Of course, at the end of the day, according to Tena, the best advice is to choose an organization well in advance of when the person needs it.