Since my last post on our ongoing care situation with Anita Dong-Miller (my mother-in-law), a few radical changes have taken place, some good, some not so good, and even a few downright heartbreaking. To recap, we brought Anita home in November of 2013 to live out her final months in our care as she struggles with dementia, Alzheimer’s, and Parkinson’s diseases. Now well into our fifth month of providing round-the-clock diaper changing, administration of medications, feeding, bathing, and exercise, Anita’s radical mood swings finally became too much to handle, resulting in a reduction of said meds and entry into hospice care. This meant, in essence, that we were willing to allow the death process to accelerate, since her body is dependent upon the L-dopa pills to function through the debilitation of her advanced Parkinson’s disease. The official reclassification on her Kaiser health plan to hospice also meant abandoning “normal” primary care physician services and instead shifted her services toward comfort over treatment. We have now received several visits from a hospice nurse, social worker, administrator, and bathing nurse, as well as deliveries of necessary supplies, such as diapers, wipes, etc. Apparently, we are also granted 10 days of respite care, in which Anita is allowed to stay in a local facility to give us a break, but we’ve yet to take advantage of this service.
The first step in our own hospice care was to reduce Anita’s Parkinson’s disease medications, which consist of three different drugs; Carbidopa (Sinemet), Entacapone (Comtan), and rasagiline (Azilect). The first two work in tandem to reduce or in some cases eliminate shaking and tremors, with Azilect working to assist in their effectiveness. The problem for Anita is that all three drugs have well-documented side effects that include “hallucinations and psychotic behavior,” to quote their own websites, and the fact she has dementia and early onset Alzheimer’s only makes things worse. Hence, with the blessings of Anita’s Neurologist, hospice nurse, and our support network of friends, family, and Kaiser medical professionals, we knocked her dosages down by two thirds, giving her only one (low) administration of each drug in the early morning hours. We were warned that, over time, the degradation in Anita’s condition might be quite stark, so we readied ourselves for the worst and implemented our plan.
Initially, as Anita was weaned off the majority of her medications, somewhat of a miracle occurred; her mood swings all but disappeared, her demeanor brightened, and her alertness skyrocketed. She even cooperated in her twice daily trips to the restroom, and her body finally began expelling correctly and at a regular schedule. When informed of this drastic improvement in Anita’s condition, our main hospice nurse, Suzy, said that in most cases patients will rebound temporarily, with some improvements taking hold and extending quality of life to the point of discharge from hospice care, entirely. Could this breakthrough last, we wondered? Personally, I could accommodate Anita indefinitely if her status continues along this trajectory or holds steady.
Unfortunately, indications that this revival in Anita’s health are beginning to wane, with a few glimmers of her “Dark Side,” returning in small doses. A particularly ugly bathroom incident, complete with her flinging feces all over me and the bathroom at-large, occurred in the recent past, while even her simplest movements have become labored; her feet and legs are turning inward and becoming extremely stiff, for example, and she’s having difficulty swallowing. Through it all, though, she still manages a smile or coherent thought now and again, and the sight of young children (and our son) never fails to elicit joy. Anita, after all, is closer to them than us at this point and while we do the best we can to help her toward the inevitable and painful end game, we’ll take some sadness in our miracle of Anita’s present resurrection.