Monday, July 25, 2011
Mother and Dad trusted an internist for all their needs until he developed a debilitating muscular disorder and had to retire at a young age. My parents were then at the mercy of a flawed health care system.
First, many physicians refuse to accept Medicare patients because they have come to believe that their educations entitle them to a very high status in our society, measured by the reward for the work they do. Consequently, our most vulnerable citizens, mandated to enroll in Medicare, have fewer options for primary care. In spite of supplemental insurers charged with narrowing the gap between what Medicare pays and Social Security’s limitations, prescription costs, and the high cost of medical care, seniors find themselves in the offices of the newest practitioners, the ones trying to build a clientele and score word-of-mouth referrals. These newbies accept Medicare, but their experience and training may be woefully deficient in the needs and problems that seniors face--and that brings me to my second point.
Physicians that Mother and Dad used in the last decade are indeed woefully deficient in one essential skill: communication. One man, an immigrant or first generation English user from a Latino home, had a strong accent and a cultural habit of speaking softly. Mother and Dad, their hearing dulled by age, struggled to understand and follow his instructions. A good nurse could have stepped into the breach and saved the day. Or detailed written instructions could have complemented the physician’s discourse. Or the doctor could have asked my parents to invite a relative to accompany them. None of those were available or suggested.
Another physician phenomenon is a pathetic attempt to compensate for age. I witnessed a white-haired cardiologist shout at my father seated in a chair not four feet from him. He was so loud that his sounds bounced off the sterile cement-block walls. He was so loud that patients up and down the hall must surely have heard his interview and assessment. He was so loud that my ears hurt after his first word, “Hello.” Dad tried to draw his ears down into his shirt collar like a turtle protecting itself from an enemy. Nurses, too, seem to have been schooled in volume--as if every person of advancing years is hard of hearing, a problem easily cured by screaming.
Has it never occurred to any of those health-care providers that rate must be monitored as closely as volume. One supposed expert in geriatric medicine spoke so rapidly that even she forgot what she had said. She repeated herself and offered the exact same advice on a subsequent visit, unaware that she had said anything of the sort previously. She grew petulant when reminded about what she had said we should expect and rushed to her computerized record, then complained about assistants with only a high school education who had conspired to lock her out of the records she required. Yes, the very same records she should have read before entering the exam room at all--bringing me to another complaint: computerized records.
Technology is grand. I have embraced it fully. I do not need anyone to persuade me that technology has made many things more accessible and efficient. I believe that health care records should be both easily accessed and efficiently processed, especially in light of the number of forms I fill out when visiting doctors I see regularly. I can’t understand why they don’t move to larger and larger office spaces biannually just to shelve all that paperwork.
But now that health care is trying to take advantage of technology, physicians use the few minutes scheduled to see and talk with a patient as time to review the patient’s history and record their diagnoses based upon observable symptoms. So instead of seeing and talking with a patient, physicians swoop in, sit on a little stool positioned in front of a computer screen, begin reading--but not the full patient history--and take notes while the patient talks--all without ever actually looking at the patient. One woman, that Mother learned to dislike very much, never even touched her patient. She just talked and talked, rapidly, unaware that Mother could not follow her.
The next doctor was so patient and attentive that we were briefly lulled into trusting her. On subsequent visits, she too became nothing more than a white-coated backside, seated at a computer screen. Even after a diagnosis of “dementia” became a fixture of Mom’s record, the doctor talked and talked, just as rapidly as the former one. Both were absolutely negligent in discharging their duties. They made no effort to communicate with their patient and seemed put off by Mother’s speech aphasia, suggesting that they could do little with a patient who cannot speak for herself.
That hospital and clinic bosses are aware of this tendency--this deficiency--in their staff is evinced by the question on a follow-up survey: To what degree did the physician look at the computer screen? Always, Almost Always, Some of the Time, Very Little, Not at All.
Still very little changes with physicians. They schedule the least amount of time with individual patients in order to maximize their time during a clinic day so that they can see many more patients, cover their overhead, and increase their bank balances. The real care is with, through, and from assistants and nurses. They complete the intake; they make the follow-up calls. They even screen the patients’ inquiries, providing an almost impenetrable wall between caregiver and client. So say everything to the intake nurse. Make sure he or she understands what your complaints are. Make sure he or she writes them down. This is what the physician will read--not the patient history--when she swoops in to sit at her computer. If the intake nurse doesn’t get it, you will not get it either.
Be very careful, however. Recently an intake nurse prioritized chronic, irritating cough above annual check-up. Thus, when the doctor had diagnosed the cough as no big deal (I’m not sure what the ICD-9 looks like for that diagnosis!), she started to leave the room. My sister and I cleared our throats and said that Mother had other concerns whereupon the mighty physician pulled herself up to her considerable height, especially in tasteful low-heeled sandals, and told us that she might have time after she had seen to her other patients but we would have to pay for a second visit or return at a different time.
After calming myself, I stepped out to speak with the discharge staff, asking how an appointment made for an annual check-up had become an appointment for a little cough. I assured the staff that, at no time, had I said anything but annual check-up until that very day in the exam room when I added, “Oh, and Mom has a little cough she’d like to ask about.” The doctor, having so thoroughly seen to the care of another patient in that short amount of time, stepped into the hall to overhear my conversation with the discharge staff. She then stormed off to ream the intake nurse, only to reappear and agree to see Mother a little bit more, all the while complaining about Medicare’s strict rules and fines leveled by the out-of-control Medicare oversight folks against the hospital with which she associates. She also lamented the high cost of child care--as if we cared about her economic woes--as if her child care had anything to do with Mother’s care.
This same medical group ordered stool cultures after a prolonged bout of gastro-intestinal woes. They actually expected a woman diagnosed with dementia to stop by and pick up lab orders, deliver those orders to the lab, pick up the kit prepared by the lab, comprehend the directions for completing the samples precisely and correctly, and return them within minutes of collection. Not once did anyone inquire who might help her. Not once did anyone suggest that there might be some other way to secure the information.
I drove 2 ½ hours to collect poop and had to repeat the sample collection because I was 1/8 inch below the magic red line which indicates the perfect balance between poop and preservative. Average adults--of which I am one--would have a tough time succeeding under the conditions set forth for this lab test; adults afflicted with dementia cannot possibly succeed. But the health care industry rolls on, secure in the knowledge that U. S. care is somewhere among the top 50 health care systems on the world.
Physicians, ya gotta long way to go--in my considerable experience and less than humble opinion. Get busy healing for all our sakes.
Sunday, July 17, 2011
Reading last week’s post, you might think that no hurdle is insurmountable, that I soldier on tirelessly with a smile on my face. You might be fooled into believing that I, like Melanie Wilkes, stand in line for sainthood. You would be very wrong. I definitely calculate what I have lost as a result of being responsible to my parents.
I lost quite of bit of sick leave as Mother and Dad’s health declined, beginning with Dad’s heart problems in 2001, continuing through the cancer that finally took Dad’s life in 2008, and persisting now as Mother visits doctors for stomach trouble, mammograms, glaucoma, and dementia. Mother needed someone to sit with her while she waited during Dad’s surgeries. That someone was usually me. Mother now needs someone to drive her places, listen for her, and remember for her. That someone is often me.
When I finally retired a little over one year ago, I wondered how much more credit I might have had for days served if I had not needed all those sick days for family. I did not and do not dwell on it, however; family first after all. Instead I consider how fortunate I was to have had the option of taking those days. An excellent college education, in part the result of my parents’ support, helped me earn a job that awarded sick leave for family. I am equally appreciative to a husband who did not and does not grouse about the drain on the family economy or the time I am away.
More often, I saw my aging, sick parents on weekends, usually at the rate of once or twice monthly. With a 26-gallon gas tank and the high cost of fuel in recent years, I have poured personal retirement savings into the pockets of Big Oil, and I’ve thought about that. I have paid too many turnpike tolls, and I wonder how many five-star meals I might have enjoyed if a poor roadbed had not required constant upkeep and repair.
I also savored my weekends off—the weekends when I did not drive the Turnpike; did not add miles to my new car, the one I thought would be my last big auto purchase (Hah!); and did not pour money into the gas tank. On those weekends off, I could sit at home with my husband. I could keep up with the grading load of a high school Advanced Placement English teacher. I could sleep late, take naps, and return to school on Monday rested, ready.
Although I am still driving to see Mom at least once monthly, I rarely make this a one-day or even a weekend trip. I usually stay three to four days. There is so much to do, but staying longer helps me rest up for the return. The drive indeed wears me down, possibly more than it otherwise might if I had not been doing it so long.
Even just five years ago, when Dad’s cancers began to keep Mother at home, more and more isolated, I drove to see her at least once or twice monthly. I tried to help her clean. (She refused help because, as Dad said, the exercise was good for her.) I occasionally made meals for them or brought food to them, but Mother loved to plan and execute menus. She also was very possessive of what Dad needed, of what he could and would eat. So my chief role was just to provide a little company, some diversion in that house.
Mother is grateful for all the help. She says “thank you” and “you always know what to do,” an acknowledgement that we are from very different generations. She never had to balance a checkbook; I have. She never dealt with repairmen; I do as often as my husband does. She never claimed a right to use any of the money that Dad earned; I do because I have earned about 50% of the household income.
And in the same self-effacing way, Mother has often rationalized the gift of time, telling herself and me that I came to see Dad, not her. Or, in her dotage, she has claimed that I enjoy being needed and choose to do what I do. This, I think, is her way of assuaging her own regret or making herself feel less needy.
Her reasoning is so foolish as to be incomprehensible. Do parents have a choice about whether to protect children? Do parents choose to neglect or not to neglect children? Is it our choice to leave a baby in its own feces, or is it our duty to make the child clean, to support the child until he can walk and talk and choose for himself. She is now the child, and I have parental duties.
Flailing parents, whether their diminished abilities are the result of physical or mental disabilities, are not choices. They are duties and cares and woes and joys. I guess you could say I choose to be a responsible adult, child, and human being. I guess you could say that I remember that there but for Grace go I one day. I guess you could say that empathy is one of my strongest traits, one that I am most proud to possess. I guess you could say that to be anything less is not to care about the least among us. I guess you could say that I am sad that my mother does not know that or cannot accept it.
Monday, July 11, 2011
Even though Mother remained busy, Dad decided to slow down at the age of 52. This complicated life for Mother, but she was unbowed. She just had to go more places alone or invite friends to use Dad’s tickets. She could rarely get Dad up and out the door when he did not want to go or participate. He played the frail card.
Occasionally, Dad could be kick-started, however. For example, Mom wanted to continue to travel after Dad retired; she very much wanted to see the San Diego Zoo and Yosemite. Dad snarled that he had no interest in seeing those places. I countered that Mother wanted to see them so he went—albeit reluctantly. He was also furious when Hospice became part of their lives in Dad’s final days. He who had been too sick to travel for decades was now determined to overcome and live on. I reminded him that Mother needed Hospice’s help. The look he gave me was absolutely chilling—as if he had just disowned me entirely as a human being.
Dad believed and said that he knew what my mother’s purpose in this world was: to care for him. He said this as if he had just stumbled across a proof for the Theory of Relativity or found incontrovertible evidence for the existence of God. Mother seemed to feel he had given her a great compliment, but his belief and her acquiescence made it increasingly difficult for her to leave him even for short periods of time such as the birth of our daughter, her proud moments in school, her birthdays, and even her wedding.
Mother tried her best to compensate. When our daughter was born, I was old by usual standards--35, young for a celebrity, but I am no celebrity. Mother and Dad were present for the birth, but left as soon as they had seen our girl. Mother later returned alone to care for me and my newborn, her third grandchild, with all the energy of youth. She bought groceries and prepared light suppers for us all. She helped me launder and fold cloth diapers, more than I imagined one infant could soil in a day. She kept her own counsel, never advising me unless I asked for guidance. She stayed the first week after I came home from the hospital, through Friday, then returned to Dad for the weekend and on the following Monday, drove back to my home to give me one more week of support.
In that second week, while I nursed our daughter and slept as much as possible, Mother crawled on hands and knees, polishing baseboards. She stretched her petite frame, using a long vacuum wand to pull dust from corners that butted against the ceilings and dust bunnies from under beds. She said it could be a very long time before I had the time and energy to clean so thoroughly and deeply again.*
In between all this labor, this gift of self, Mother lay my tiny baby beside me and snapped a picture, new mother and infant, each on her right side, each with hands tucked under her chin in a posture of prayer, each with eyes closed, relaxed and asleep. We seem to be twins born some thirty years apart. This photo is one of my favorites. I enjoy finding it in a scrapbook of our daughter’s first three years, but in truth, I do not need to see it to remember its every detail. I see it now as I write about it.
Recently, after her aged dog endured a final illness and passed, Mom’s home needed deep cleaning, the kind that strangers or hired workers will not do. My husband and I loaded our equipment, filling our van from floor to ceiling with a Bissell steam cleaner, Swiffer mop, Shark steam mop, Swiffer dusters, vinegar, Fantastic, and Clorox.** We stooped, lifted, pushed and pulled for two full days. We were happy to do it, happy to make Mother feel proud of her home.
Often, Mother apologizes for dragging me across the turnpike, a little more than two hours from my home. She worries about my time away from my husband, but I married a man much more generous at heart and much more self-assured than my dad. He cherishes me, loves my mother, and helps me care for her.
Mother also frets that her needs are too much for me. How could such labor be too much? How could the three to six days that I spend in her home each month be too much? How could a half-day telephoning caregivers, housekeepers, physicians, bankers, and repairmen be too much? How could balancing her checkbook and paying her bills be too much?
Mother gave of herself. She gave patience, and she gave the gift of labor. Now it is her time to receive.
*The house was pretty clean before my daughter was born, I hasten to add, in my own defense.
** No, I am not receiving any reward, in-kind or otherwise, from any of these brands.
Next Week: I Ain’t No Saint
Monday, July 4, 2011
Even though Mother is cheerful much of the time, she has her sorrows, especially because she was, as I said last week, always on the go, rarely one to sit and watch television. She played Bridge at least weekly, more often if someone needed an extra hand, and she was sought after because she was a sharp player with a fine command of the game.
Mother was also an active member of a charitable group, charged with raising funds to send girls to college. She accepted the offices of secretary and president for several terms. She attended lectures, museum exhibits, symphony concerts, theatrical productions, operatic pageants, the ballet, and festivals. She exercised daily and kept her home spotless.
Mother also cultivated friendships, shared biannual girls’ get-aways, and offered a sympathetic ear when those friends lost husbands and parents. At my father’s funeral, one of Mother’s friends told me not to worry because “Your mother is a good friend; now her friends will take care of her.”
This was an implied promise broken, however. That woman’s husband lost one leg, then the other due to diabetes. She had no time to care for anyone but her husband. A different friend lost her husband after a nasty fall while in the grip of Parkinson’s. That woman fell into a debilitating grief, one from which no one, not even her children, could rouse her. A third friend, her husband still quite healthy, decided to relocate in another state, closer to her children before age claimed their independence. A fourth, confined to a wheelchair after a stroke, was moved to a nursing home after her care-giver, her dear husband, succumbed to cancer.
Indeed, promises to friends are often broken because of prior promises to spouses or because Nature can be a cruel tyrant. The bonds of family, we hope, are more binding than promises to friends. So it is with Mother; she has her family to speak for her now that Alzheimer’s has stolen her speech and transformed her into a wonderful listener. Yet she remembers little of what she hears so others have to help her care for herself.
I wish it were otherwise. I wish Mother were able to direct her own life. I wish she were a seemingly unstoppable Force of Nature again. So does she.
After a short visit yesterday, I called to tell her that we had returned home safely and heard the weight of sadness in her tones. She said she had been thinking about what lies ahead for her.
I reminded her that she has always found a reason for hope within every setback. I remembered for her that she has always been fearless and determined. I assured her that she can be so now, and I know I am¾determined to give her as much independence as possible, determined to give her as many days in her own home as possible. I’ll try to be fearless for her.