Dealing with the Panic Caused by a Diagnosis of Alzheimer's Disease
A colleague from work called me recently about some projects which we were working on. During our conversation, she seemed a little distracted, and soon I discovered why: she had just received word that her mother had been diagnosed with dementia.
Our phone conversation caused me to flash back to the feelings I had when I first found out that Mom had Alzheimer’s disease. At that point in 2005, I had thought Mom’s major health issues were her advanced stage of Chronic Obstructive Pulmonary Disease (COPD) as well as mild cognitive impairment (MCI). After seeing Mom’s mental deterioration and uncharacteristic behaviors which triggered a series of events leading to the decision to place my very independent mother in a secure unit at a nursing home, I had the “deer caught in the headlights” look for quite a while.
I felt as if my world was spinning out of control and no one could adequately prepare me for dealing with the new world of caregiving I was now entering.
In the April 2007 issue of O Magazine, Martha Beck writes about how to get past panic and stress in an article titled. "The Panic Button." Her suggestions describe how to survive an onslaught when your world is turned upside down. Her suggestions (and my comments related to caregiving) follow:
1. Go Ahead and Freak Out – In her column, Martha points to a study by Dr. Peter Levine that found that people, unlike animals, try to subdue physical “emergency” reactions caused by a crisis. Dr. Levine found that people who go on and have these emergency reactions often are able to cope better with the crisis and often exhibit fewer symptoms of the trauma afterwards than people who control everything and appear to remain steady.
Although my own tendency is to try to remain calm in stressful times (thanks to being trained to work on tight newspaper deadlines), Mom’s diagnosis felt like a huge crisis that consumed my whole world. And yes, the situation did overcome me physically; at various times during September 2005, I found myself shaking uncontrollably and one time had to pull my car off the road so I could just sob loudly for a long period of time. After that release of pent up reactions, I was able to better focus on dealing with Mom’s issues and making the necessary decisions.
2. Release Your Expectations – Martha notes that in a time of crisis, you need to realize that the situation will be resolved at some future point, but until that happens, you have to accommodate the situation. Thus, you have to change schedules and let go of expectations.
In my case, I had just started a graduate assistant job on September 1, 2005 and was a full-time student (taking three classes). As Mom’s situation began to unfold, I got in touch with the professor who is my doctoral chair to explain the crisis I was experiencing. He then contacted the professor I was working for (who at that point, I hadn’t met) as well as the departmental chairman. I also contacted my course instructors to explain Mom’s situation and then kept them regularly informed of issues that arose during that fall. Fortunately, everyone cut me slack so I could have time to deal with Mom’s issues and still continue with my doctoral studies (albeit at a slower pace).
3. Narrow Your Time Aperture – Martha suggests narrowing your focus so that your concentration is only on the crisis at hand instead of the other issues in your life. She eloquently said, “Be here now, and you’ll realize there’s nowhere else you ever need to be.”
That guidance is invaluable when you first hear the diagnosis of dementia for your loved one since you may feel like your world has completely changed. You need to spend whatever time is necessary to focus on what the disease means for your loved one, to provide loving support to him or her, and to think about the next steps you need to take related to this diagnosis. Worrying about cleaning the house or doing other mundane tasks takes a backseat at this point to these more pressing care-giving issues.
4. Make Loosey-Goosey Plans – Based on the previous suggestion, Martha encourages taking each step as it comes (instead of having a master plan) until the crisis passes.
This, too, can be the case in the initial stages of providing care during and right after the diagnosis. In my case, after Mom started exhibiting uncharacteristic mental behaviors over several days while staying with me in early September 2005, I asked the emergency medical technicians (who I called due to breathing problems that Mom was experiencing) to also relay to the emergency room doctor that Mom may need a geriatric psychiatric evaluation. The doctor agreed; the next step was to send Mom to a facility that could do that evaluation (since the hospital didn’t offer this service). Thus, our family had to decide on a moment’s notice whether to send Mom to a facility in Austin, Houston or West Texas. That decision led to the next decision based on Mom’s transfer two hours later (i.e. contacting family in Austin who could meet Mom when she was arrived at the hospital). That led to the next decision point, and so on. Eventually two months later, life had sorted itself out and returned to its regular pace.
Receiving a diagnosis of Alzheimer’s disease (or any other type of dementia) often feels like a crisis not only for the loved one, but for the family. Giving up control, but still maintaining focus isn’t easy, but Martha’s tips provide some useful information in getting through this whirlwind time in one piece. I wish I had had her suggestions when Mom was diagnosed; I hope that other caregivers (new and veteran) find them useful now.
P.S. - If you have a loved one who has been newly diagnosed, be sure to see Carol Bradley Bursack’s column, “The First 48 Hours: Alzheimer’s Disease.”