A few weeks ago, my mom died after a long illness. Her death certificate says that her demise was due to natural causes, and truly, short of an autopsy, we will never know which of her many health problems finally did her in. Whether it was the cancer, or the lupus, or her advanced rheumatoid arthritis, it became evident that she was, in fact, wasting away -- her 83-years-old machinery no longer able to regenerate the healthy tissues consistent with sustainable life.
For the last 10 months of her earthly existence, I was Mom's primary caregiver. My days were given over to an endless round of doctors' appointments, drug prescriptions, medical and insurance forms, and transfers to and from hospitals, nursing homes and assisted-living facilities -- all in a futile attempt to keep her fighting, focused and alive.
It was the worst year of both our lives. When she finally shuffled off her mortal coil and lay unmoving in the nursing-home bed that had kept her prisoner during those final months, I held her hand for hours. I like to believe that she had made peace with her condition before the end came, realizing that death meant, at least, the termination of the pain and misery that she endured for so very long.
Naturally, I am not the first son who has had to watch a beloved parent fade away, but the experience was new to me -- my dad having died when I was a young boy, out of reach in a hospital I never visited and interred after a funeral I was prohibited from attending.
And although I'm still attempting to digest the many lessons I have learned over the last year, there are some things that I am sure of when it comes to caring for an elderly relative. Therefore, I'd like to pass on a few observations to anyone who may soon be facing a similar situation.
Nursing homes: There are approximately 17,000 nursing homes in the United States, serving about 1.5 million residents. Sixty-eight percent are for-profit institutions, many owned by large chains, and 26 percent are nonprofit. The remaining six percent are owned by federal, state or local governments.
Having had relationships with both profit and nonprofit institutions, I can reasonably advise anyone searching for a nursing home to settle on a nonprofit establishment. To be sure, the vast majority of for-profit homes are run by good, decent people, with only a small percentage of them headed by crooks or other unsavory types.
But the reality is that nursing homes are a big business in America. Total nursing-home revenues will top $55 billion this year (with about 65 percent of the care paid for by the government.) And in the corporate world, the equation often comes down to profit vs. compassion. Unfortunately, and all too often, the market pressures to produce profit take priority. My own experience bears this out.
Hospitals: Remember the scene in "Terms of Endearment," where Shirley Maclaine's character goes ballistic in the hospital ward so that her daughter can get her pain medication? Well, many times I found myself channeling Shirley's energy, in order to pull off a few histrionic moves of my own.
The rule I discovered is: Don't be nice! It won't help your loved one and a lackadaisical attitude on your part will only inspire the overworked, underpaid nursing staff to be similarly disengaged.
Be as tough, threatening and brutal as you can be. Tell everyone who passes your way -- doctors included -- that you will be on their case constantly and that anyone who gives your parent less than five-star service will have to deal with a lunatic who has enough time and moxie to get them fired, if necessary. Trust me on this. The good nurses will admire your spirit and bond with both you and your parent. The bad ones, who are merely waiting for their shifts to end, will be scared into doing their jobs properly.
Funerals: All I can say is, do some nosing around before the last minute. When the end comes, it's too late for comparison shopping, because you're at the mercy of time and circumstance. (If my mom knew what it cost to bid her farewell, she'd turn over in her outrageously expensive new grave!)
Finally, try to resolve the outstanding issues you have with your folks, and don't be afraid to talk about the dying. It may be too late to help your parents live a better life, but you can be instrumental in helping them have a "good" death. Notwithstanding all the stress my mother put me through this past year, I wouldn't have traded it for anything in the world. Goodbye, Mom. I love you.
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