Yesterday was a very sad day for us at the facility. Ms. Rose, a long time resident, (almost 10 years), slipped quietly away, crossing to the other side.I remember the day she moved in, like it was yesterday. She was a “wanderer and rooter”, meaning she walked throughout the facility, rooting through drawers, desks, purses…anything was game. Her speech was somewhat impaired, difficult to understand, and very soft spoken.
Dementia chooses it’s own speed for each of it’s victims, sometimes moving slowly, other times moving faster than the speed of lightening. Ms. Rose’s dementia moved at the pace of half drunk snail, moving unsteadily, but surely making progress. She needed help with all of activities of daily living ;bathing, dressing, grooming, continence care, feeding and assistance with mobility.
Her family consisted of five daughters and one son.Over the course of the years, I saw two of them, one of which came every 5th of the month, to drop off the payment for the month. Every single time she stood in my office, she would ask me how much longer I felt her mother would live.
“She has no life. She would not want to live this way. I just wish God would take her home and end her suffering,” she would remark.
I keep my views, opinions and judgments to myself, choosing only to say, ” I understand.”
Two weeks ago, Ms. Rose had stopped eating. This is when families are forced to make life changing decisions for their loved ones, hopefully honoring the resident’s wishes. We sent Ms Rose out to the hospital, hoping to hydrate her, find any source of infection, and get her back on the road to recovery, back to status quo. That plan failed.
Once Ms. Rose was at the hospital, her daughter made the decision to not treat any infection, to not allow hydration, and signed her up for “pallative care.” Ms. Rose came back to the facility the next day with doctor’s orders to stop all medications, hold all feedings ,and to keep her comfortable. In other words, do nothing more for her. Hmmm. Okay.
The next day, hospice teams rolled in, starting orders for morphine and ativan around the clock to “manage pain and insure comfort.” Suddenly, the facility was filling up with her daughters, her grandchildren and other strangers I have never seen before. Her son rang the facility phone every hour on the hour, choosing to dodge his sisters, but asking if “mom is still hanging in there”.
At 3:57 pm, the hospice nurse appeared in my doorway, whispering quietly, “she is gone.” You know, I don’t think people give health care workers enough credit for what we do, and realize how we are affected by the loss of someone we have cared for. I often remark about how we spend more time with our patients than we do with our own families, which is so very true. We understand our role, as paid caregivers, not decision makers. Often times, we become extremely close to our patients, and when the family makes a decision we don’t agree with, we tend to become judgmental and vocal, which is never a good mix.
At 4:15, Rose’s daughter appeared in my office. “I found and inexpensive funeral home. They will be here soon. I am so glad God saved mama from having to live another day like she was. If it were me, I would have called Dr. K long ago. I would never want to live like that. Now, I need to settle the bill before we freeze mama’s accounts because you know my brother is going to want his part of everything before the ink dries on her death certificate.”
I sat quietly, holding my tongue by biting my lip to the point of extreme pain. Some days, I hate my job with a passion, and at that very moment, I despised it. The story just gets worse…..
A few years back, the daughter called me and told me she would have to move Rose because of finances. I crunched the numbers and decreased her rate, allowing Rose to remain with us. Yesterday, the daughter asked me a question that caused me to exercise every bit of self control I had.
“Now, mama has 728 acres of prime real estate in…..(I can’t even make up a place that would equal the location so we will just have to call it paradise.) paradise and it has got to be worth at least a few million. Do you know how we go about alerting them of her death?” At that very moment, I excused myself from the room and hid in the bathroom until she gave up waiting on my return.
I am working extremely hard on not being judgmental. I am trying to keep my opinions to myself. I try very hard not to use words like “greedy”, “selfish” or “uncaring”……….maybe I am wrong to think as I do. Maybe I am wrong for being an advocate of life sustaining measures in dementia patients. Maybe I am wrong for believing in feeding tubes, antibotics and hydration. Maybe I am wrong to not support the hastening of death in dementia patients. Does anyone out there see things as I do? Thoughts? You see, I would close this blog with” It wasn’t God that saved your mama by starvation, infection or dehydration…that’s all on you, you, the decision maker.”, but I am really trying to refrain from such statements….I believe there is a Bible verse in Hebrews that says ” And inasmuch as it is appointed for men to die once and after this comes judgment.” I wonder whose judgement that is?