My Dad must have nine lives! He has survived many physical ordeals: Head injury in 1979 caused by a 25-foot fall and the resultant seizure disorder, multiple fractures, fractured skull and the accompanying bleed that has left him with difficulties in speech, balance, coordination; Colon Cancer in 2001 complicated by a major stroke, the chemotherapy that followed, to name a few. Recently, he has had quite a few falls, one of which resulted in a four-inch gaping laceration on the back of his head, requiring staples. CT of his head and other investigations revealed no complications.
Last week, we received a call from my brother in San Diego quite early in the morning. My father had been taking his usual morning shower, when he fell suddenly. Because of his recent falls, his caregiver has made it a point to stand very close to him, even when he’s taking his bath. (He refuses to shower sitting down, no matter how tenuous his balance has been for the last 30 years!). And so, when my brother and his wife found them in the bathroom, my father had fallen on his caregiver. Needless to say, my brother called for an ambulance. My father was pale but conscious, but what was more alarming was that his blood pressure had been low (60/40) and his heart rate was irregular and at only 55/minute. This made us suspect possible cardiac problems, even arrhythmias. He was adamant that he was all right. That no one need worry and he was getting dressed for the day and having his breakfast at the usual time.
The paramedics did come and for the next half hour, a vociferous argument between my brother, my father and the paramedics ensued. In the end, the paramedics had to leave. By law, they cannot force anyone to be taken to the hospital against their will unless death was a strong possibility or was imminent or the patient was unconscious. My brother offered to have an internist see my dad. No way, he had admonished my brother. He wanted to be left alone. He wanted his breakfast and to carry on with his day as though nothing had happened. Of course, I was on the phone with my brother and his wife alternately, all morning. He kept threatening to leave if my brother did not leave him alone.
I talked to my father’s internist and his neurologist. We discussed various medical issues. But, they also cautioned me about the more sensitive matters. After all, my father, although he has multiple health problems, is still lucid and able to pass a mental status exam. He may have early dementia but the obstinate behavior is not necessarily a feature of dementia. Not at the early stage. Obsessive-compulsive personality? Perhaps.
I have been giving my parents’ aging and the slow and steady decline of their various faculties over the years a lot of consideration. It must be so difficult for them. It’s hard enough for me to watch this, having witnessed how vibrant, energetic, and larger-than-life they were in their youth and even through their middle-age years*. I can imagine how frustrating, sad, and even distressing all this is must be for them.
I think about my father, with the various health issues he has had to contend with, more from his unhealthy lifestyle so typical of his generation. I think about all the doctors, the appointments, tests, procedures, so many medications. I think about how invasive these have been to his privacy, and to his independence. The restrictions, the do’s and don’ts so we can keep his kidney problems stable, his progressive hearing loss, the daily eye drops for the glaucoma, etc. All this has surely dampened his enjoyment of many basic joys in life**.
Here is a man who was in total command of his life, his destiny even. And now, he can’t function without a caregiver. He needs a walker or a wheelchair to get around. He has difficulty reading unless it’s a very big font (I mean big like 20 points). He watches TV so loud, even the neighbors can hear it. He has a lot of food restrictions. He has difficulty articulating as a result of his head injury and stroke, that it’s exhausting for him to carry a conversation for longer than a few minutes at a time. He does not like to go out at night especially. He says he gets tired.
It is very understandable that he will do his darndest, to hang on to whatever little control he has of his day-to-day. And this may seem unreasonable to all of us around him, who are constantly worrying about any more deterioration of his health. He may, at times, contribute to the further compromise of his health, by delaying medical care that we believe he needs badly.
At this point in his life, he wants to feel that he’s still in control and he’s not alone. I have found that the elderly follow a pattern. I saw it in my mother-in-law (may she rest in peace!). She had been ill since early 2009 but until about three weeks before she passed on in March 2011, she wanted to do the planning of the daily meals. She specified what people in the household ate. Her children recognized this need for control, and they gave it to her willingly. Old people tie this last bastion of control to their happiness or contentment. If you take this away from them, they may get depressed. They might lose their will to live.
Back in 2004, when all the major treatments had been completed for my dad (5 surgeries and several other medical interventions later), I had discussed the matter of decreasing the doctors’ visits and interventions with his doctors. This is because I noticed that he was becoming more and more miserable, at times almost belligerent. At that time, there were about 11 different doctors managing all of his health problems. (Let’s face it, with my dad’s many health issues, it’s really a miracle he’s alive today***.)
What a miserable life, he must have been thinking at that time. And so, we have tried to bunch together doctors’ visits and keep them to the minimum allowable for good care. This has given him periods of no doctors and hospitals so he can have his “normal life.” In return, we noticed that he was not as miserable. In fact, he would have periods where he was clearly enjoying himself. He gained weight again. He looks great until now, considering all the issues.
And so, what now? We continue to talk about this as a family. I continue to deliberate about this as a daughter, as a physician, as a caretaker. On the one hand, there is always the knee-jerk response to promote and preserve life. On the other is understanding the meaning of the Hippocratic Oath, “Do no harm.” What good is keeping a life when it has no meaning, no dignity, no pleasure? We continue the balancing act.
*I don’t know what middle age is anymore. Lately, the definition seems to be a moving target.
**I’ll never forget one of my Neonatology professors in Ottawa, who told us in one “hallway conversation,” that man has five basic pleasures: Eating, peeing, pooping, sex, sleep. If even one of these is a problem, you have an unhappy person. I found his comment amusing, if not a little insipid or crass even. I did not realize that over the years, how much it rings true for a lot of people’s miseries.
***I am so grateful for the combined efforts of the family—my mother, my siblings, all the spouses, the caregivers, the extended family, etc. It takes a village, they say? Absolutely!
- Financial lessons learned from caring for an elderly parent (the-military-guide.com)
- Staying sane… (hippiestoboomers.wordpress.com)
- Compromise is the Key When Mom and Dad Need Help Support Turns Surviving into Thriving (prweb.com)