I have recently gone through a classic personal experience of navigating the health care system with my parents in of all places Cleveland, Ohio. Known more often by Americans as the home of the Rock and Roll Hall of Fame, Cleveland is also a major health care hub anchored by the prestigious Cleveland Clinic and Case Western Reserve University.

Parents Profile

My mother is 81 and my father is 84. They live in a small Levittown-like bungalow in an older suburb of Cleveland. Mom has thyroid problems, hypertension, and arthritis. Despite these chronic conditions, she still golfed, drove an automobile, and was completely independent up until mid-2003. Dad has hypertension and high cholesterol. He is also blind in one eye and has poor hearing. A previous fracture limits movement in his right leg and has stable quiescent prostate cancer. He is a World War II prisoner of war and suffers from manageable—not severe—post-traumatic stress. Dad, too, is independent and is involved in church and other community activities. Mom’s regular internist is nearing retirement. Dad’s medical services are a bit more complicated. He sees a younger internist for blood pressure and cholesterol treatment; but he goes to VA hospital for his eyes, hearing, therapy for his leg, and his post-traumatic stress counseling.

Mother Begins Falling Down Four to Five Times A Day 

From May until August 2003, mom develops a progressive balance problem, literally falling four to five times per day. Her close-to-retirement internist says “it’s just aging.” Mom pushes back and asks for physical therapy and for a comprehensive gait and balance evaluation. Her internist says, “no, it will not help.” I was now getting a clearer picture of the intensity of her falling and flew home for the weekend. I decided to access the American Geriatric Society website and find three doctors on the west side of Cleveland. Just as important, I searched the web for case managers in the Cleveland area. 

My mom is a mess. She cannot even take two steps without major effort, is flat affect, and has very poor memory. I call the first doctor on my list. Within 15 minutes, he arranges her admission to the community hospital and he has a neurologist meet her when she is admitted. I return Minneapolis, feeling relieved to entrust my mother to capable hands in my professional fraternity.

She has an MRI, lab tests, and a spinal tap for removal of cerebrospinal fluid. She is diagnosed with normopressure hydrocephalus (NPH), a condition characterized primarily by gait (walking) problems, dementia, and urinary incontinence. NPH can be difficult to diagnose and many times goes untreated.

While Mom is the hospital, I somehow manage to get two living wills done. Now it gets interesting. There are no neurosurgeons at this hospital. She needs to get transferred to the big trauma center facility where her new competent geriatrician neither works nor has admitting and practice privileges.

My dad calls me and says “they’re sending her to a new hospital today. I don't know what to do. I think I’m losing it!” I call a case manager and we agree on the contract over the phone; she goes to the hospital and actually connects with the discharge planner. She gets a clear picture of what is happening and coordinates both the transfer to the next hospital with my dad and helps explain to dad what is going on.

Mom goes to the big trauma hospital, and the “team” of neurosurgeons checks her out. They come to the amazing conclusion that, no, its not normopressure hydrocephalus, it must be cervical chord compression. I get on the phone to her original neurologist from the community hospital and ask him to call neurosurgery to make the case why we think it is NPH. 

Phone Plea Works

The neurologist’s phone plea works. The trauma hospital neurosurgeons reconsider their diagnosis and do another spinal tap (4 hours in radiology) to remove fluid. She walks better again, they are convinced, so off she goes to surgery.

Remarkably, my mother avoids delirium, and makes good progress in physical therapy. Two days later, I receive another frantic call from my dad. The insurance company says she has to leave the hospital and he does not know what to do. Our case manager comes to the rescue with three good choices for us to consider—rehab at the trauma center, rehab back at the community hospital, or rehab at a nursing facility. The decision is influenced by which will accept her, which insurance will pay for, and which my dad can get to easily.

We decide the community hospital transitional care option is the best choice. With two weeks of therapy, my mother makes a huge improvement, walking hundreds of feet and successfully carrying a piece of cake from one point to another in the physical therapy room. 

Father’s Depression Complicates Mom’s Return Home

My mother’s recovery and return back home is complicated by my dad’s emotional struggles. He is sliding into major depression. He cannot make decisions. He cannot figure out how to pay bills. He is completely overwhelmed by my mother’s illness.

Again from my office back in Minnesota, I call his doctor to get Dad into the office. His doctor starts him on Zoloft and the case manager helps ease the burden by taking care of discharge plans, arranging an overnight aide for the first four nights, and getting the Lifeline patient alert system installed in the home. With Mom at home, she gets home physical therapy and occupational therapy to help her regain her strength and ability to walk. But after just one week at home, Mom is actually getting worse and Dad continues to experience significant problems coping with her illness. She starts to fall again and is readmitted to the metro trauma hospital.

Mom develops some bleeding on the surface of the brain as the fluid is decreased by her shunt. She needs two burr holes to drain the blood. She then has a re-bleed and needs a third burr hole. Three burr holes later, mom is doing better but not great. Nonchalantly, the neurosurgeons order another burr hole. But this one causes a small bruise to the brain that leaves Mom’s left arm and leg a bit weak.

Back to the World of Therapy

Mom still exhibits no delirium and a discharge meeting is scheduled. Where should we go this time? The case manager we hired again pops in and helps my dad make a decision. They decide to stay at the metro hospital, so she is off to the brain rehab ward. Meanwhile, Dad is still very depressed and I ask his doctor to schedule a psychiatric consultation. The very next day Dad gets in with a geropsychiatrist who puts him on the drug, Remeron, to help treat his depressive symptoms.

Home Again

After 10 days in the metro trauma center’s brain rehabilitation unit, Mom is ready to be discharged. Dad is better and the plan calls for Mom to be home before Thanksgiving. The case manager is still involved in arranging care and Mom may or may not need overnight help. Dad gets a call from the insurance carrier just to give him a heads up that they are in negotiations with the metro trauma hospital. They might drop the hospital from their provider list in 2004. But with Dad’s new medication, he copes alright.

I have both good opinions of how things worked out. Mom had very responsive clinicians, but the fragmentation of services and decision-making was beyond my wildest dreams.

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