Watching all four, now only two of our senior parents over the past ten years, I’ve been intrigued that a certain amount of helplessness seems to surface when they encounter the medical system. When a person becomes ill or develops a chronic condition, the medical world usually goes into high gear. This is especially true with seniors and medicare. There are tests to take, specialists to visit, and therapy or rehabilitation sessions to attend, so a patient is managed and told what to do every step of the way.
The scope of the medical care system comes through with great clarity in the Life With Father blog, whose author writes thoughtfully and in detail about caring for his father.
With our parents over the years I’ve noticed that the number of possible treatments is expanding, while at the same time they have fewer and fewer opportunities to ask questions that will help them understand the intricacies of their medical care. Our parents, as well as we aging children, have difficulty formulating questions at the moment a treatment or test is prescribed, and I am sure that increased technology and decreased doctor face time contributes to the problem.
Once they leave the doctor’s offices, our parents are hesitant to ask questions because they can rarely speak directly with their physician, who is often surrounded by a bevy of nurses, aides, and office staff, and seniors often feel helpless to move forward. We aging children on the other hand are more inclined to ask to speak directly with our doctors — a second or third time if necessary.
Dr. Bill Thomas an internationally known geriatrics expert (Changing Aging blog ) writes about the “plagues of long-term care” — helplessness, loneliness, and boredom. While these three “conditions” surface in long-term care situations, I believe the tendency to feel helpless begins long before anyone thinks about long-term care, and that the rigors of medical care play a significant role.
My husband’s mother, at a time when she was active, focused, and an active member of multiple book clubs, complained about heart palpitations. She knew something was happening, but it never happened when she was at the doctor’s office. Mother even went so far as to read about atrial fibrillation in her Harvard Women’s Health Watch newsletter. Her doctor had her wear a monitor for several days, but no palpitations were recorded.
More than once while sitting with Mother in the dining room she’d comment, “It’s happening now.” We’d suggest calling the doctor (now), but no, she wanted to wait until office hours, and she abhorred the emergency room because of unfamiliar doctors and long waits (check out my posting about a senior citizen emergency room that Dr. Bill Thomas helped to start).
So the next morning Mother would call the doctor, a timely appointment would be scheduled, and once again the doctor would not hear the palpitations. After a while, mother stopped calling each time the palpitations recurred, waiting until a regularly scheduled appointment.
After Mother’s recent death we discovered that she had recorded each “fluttering” event in her diary, and there were many. But because the doctor never heard the the palpitations, and mother never pressed the subject or even brought in her diary showing the doctor how often the palpitations were occurring (one might be thought to be challenging or second guessing a doctor she might have said) nothing happened.
One morning just after a South Carolina visit (during that visit she reported two episodes), we arrived home from our 12-hour trip north only to turn around and return. Mother had been hospitalized because of a stroke (read about controllable stroke risk factors) and there they immediately diagnosed atrial fibrilliation. The stroke led to more and more medical problems, increasing difficulties with the activities of daily living, and extreme discomfort during her last three years of life.
I am not blaming the doctor or Mother. For some reason the doctor hesitated to treat her for the problem she reported, and mother hesitated to pursue the subject. Mother was in many ways being polite and showing respect for her physician, who she really liked. She did not think there was anything to do.
She was displaying a type of helplessness — she did not know when or how to follow through on the problem. Clearly she must have surmised it was a problem, given the notations in her diary. Yet Mother did not raise any of the issues, felt the doctor was the expert, and apparently never considered that her palpitation events could be a useful diagnostic tool for the doctor.
Most significantly, she declined the offer of help from her son,who wanted to help and might have been able to help her (and her doctor) sort things out.
Helplessness or pride? It is difficult to know.
First off, I wanted to thank you for mentioning my Life With Father blog in your post. I’ve started finding all kinds of folks writing on this topic in the last month or so, and it’s great to see that some are stopping by my blog, as well.
Second, I really like the way you’re linking to illness and treatment descriptions in your discussion of your mom’s illness – you’re providing a great resource. I know what it is to come home from one of my father’s specialist appointments and spend the next two hours Googling every word of the resulting report, so I know the work you’ve put into this.
As to the topic of this post – I’ve tried to figure out the same behavior with my father. In addition to the helplessness/trust in experts, I think my 88-year-old dad just grew up learning that things usually go away if you ignore them, so he just hasn’t paid that much attention to health issues. And I think all the rounds of specialist visits/tests/results visits are part of what he sees as his occupation now – I think they help give structure to his days and weeks: go to doctor, get poked and prodded, get prescription, get follow-up appointment… rinse and repeat.
Thanks again for all your hard work on this.
Thanks to you, too, Chuck. Considering how medical activities provide occupation and structure in our parents’ lives may be an idea for a future post. Medical activities and doctor’s appointments take on lives of their own as well as providing conversation at non-medical activities.
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