I am a person who has had more hospitalizations than he can remember. In doing so, I have learned how to navigate and understand the systems of care as a prosumer. As a professional consumer of services, I consider myself adept at speaking with and communicating with doctors, nurses, and medical specialists. Collabatoring, and communicating with different professionals and family members continue to help me determine the right treatment fit when this wasn’t clear from the start.
Given my research experience with Alzheimer’s disease and related dementias, I was the first to diagnose my father’s dementia five years ago. Diagnosing my dad was pretty straightforward. My dad’s general presentation was shifting. He was having memory problems. My dad’s memory was never spectacular. I couldn’t help but notice five years ago the rate of decline. It was as if his memory issues were speeding up and intensifying. They weren’t following the normal slope for his age group at the rate and pace of degradation.
Five years ago, up until one month ago, his dementia was slow-moving. During those five years, despite my dad’s pushback, I was finally able to connect him with a neurologist. The doctor did a full diagnostic workup at a primary care facility. After it was ‘confirmed’ my dad had dementia he was prescribed medication.
Five years have since passed since my dad’s initial diagnosis. Until a week ago, my dad, while ever slightly more forgetful, was still driving a car, taking care of himself, and getting out and about the community.
A month ago, my parents were visiting my home and bringing over breakfast. I received a phone call from my mom. She was in the car with my dad traveling with my dad down to visit: “Max, you have to come downstairs…”. I had first thought my parents were too busy to stop by and wanted to move on with their daily activities.
I took the building elevator down to the lobby and didn’t see my dad and mom at the front door as usual. I began walking outside to find my dad clutched to a metal pole by the foot of my building. His chief complaint was he couldn’t walk any further. He was shaking, and his voice sounded strange.
We knew something was wrong but didn’t know what. My dad up until that morning was gardening, bending over, and walking around without restriction or diminished functioning. Both my mother and I agreed to take my dad to a secondary care facility, a hospital, for evaluation at an ER.
Going back to his primary doctor was out of the question, How would we get him there if he couldn’t walk? We didn’t have a wheelchair, and my dad didn’t use any assistive devices. So we took him to the Emergency Room (ER). The ER doctors were generally pleasant, but after a week in the hospital, we didn’t get a diagnosis.
I’ll never forget the astute words of my mom when said to me: “how do we prevent this from happening again if we don’t know what it is?” The plan moving forward was to send my dad to inpatient rehabilitation to strengthen up. A week later, my dad returned home dependent on a cane, but only slightly better.
Four days after returning home, my dad bottomed out completely. The man who taught me English could no longer speak cogently or even sensibly. My dad couldn’t walk at all.
The newest symptom in his rapidly worsening condition was extreme agitation and pronounced memory issues, much worse than ever. My dad kept trying to stand and walk forgetting he was having issues with ambulation and mobility.
Now he in addition to all the mounting problems he was a fall risk. Growing more and more concerned for his safety and knowing something was seriously wrong, I called an ambulance and we had him taken back to the hospital. My dad went through more testing at the hospital, this time targeting his brain. After not discovering anything clinically significant, the doctors, at a total loss simply decided he had Parkinson’s disease. This didn’t make much sense and we were beginning to get extremely nervous. The nursing care manager met with us before his discharge from his second hospitalization, except this time his prognosis seemed even less promising. It was as if the clinical team didn’t want to rehab him or think it would help him much.
As a family, we wanted to try, and hope, that a second stint at rehab would help strengthen him. Perhaps with this new trial of Parkinson’s medication, the aggressive progression of his confusion would at least slow down.
My dad went back to rehab. This time, we witnessed even less improvement and more confusion than ever. Knowing the condition he was in, and what we would need to do to bring him home and care for him safely, we installed a lift on the staircase and brought in a hospital bed.
Due to my dad’s increasing difficulty remembering his condition, and that he couldn’t walk without assistance anymore, we hired health aides to watch him at night and during the day so he didn’t fall and hurt himself further.
Not four days from arriving home, my dad is almost totally incoherent when he spoke. He was more confused than ever. He can barely stand up. He needed feeding and 24-hour supervision. We had an appointment scheduled with his primary care neurologist a month out because the doctor wanted to see how he would respond to the new medication for Parkinson’s. We knew in our hearts, that if we waited any longer, my dad would be in serious trouble. With our health aide and my help, we got my dad to the neurologist.
The doctor was quick to note “He’s much worse…” than when they met after his first hospitalizations, and now very impaired compared to when they had met regularly during the past five years. After completing some tests, the doctor turned to us and said: “At this point, we are looking at an obscure neurological disorder. Were going to need to get him to a tertiary care hospital. He won’t survive outpatient at this rate of decompensation”. Tertiary care, advanced specialists, at a major hospital center, because a standard community hospital simply does not have the specialists, or equipment, to diagnose and treat his condition.
Telling the aide to go home for the day, we drove down to NYC to New York-Presbyterian Hospital with a packet of papers from the neurologist, a special note explaining everything, and a script for a neurological workup at the ER. I hoisted my dad from the car to a wheelchair by the ER, screaming for help, because my dad was agitated and just can’t stand up nevertheless turn and pivot. The diagnosis from the primary neurologist is rapidly progressing dementia.
The third hospitalization and the last stop on the train for medical intervention is tertiary care. Any hope of halting or treating my dad’s condition would be at this level of care.
My dad was declining quickly. We knew, if we didn’t seek out this specialized level of care, the outcome would be extremely unfortunate.
Our hope was the last stop in terms of medical intervention. Given my dad’s train had already left the station, this was the only path forward.
I once understood levels of care as abstractions when sifting through a clinical grey area. I now understand each of these precious stops in the system of care as levels of hope.
Remember, when you need help, medical or otherwise, keep in mind the seriousness of what you are dealing with and the treatment you get. If you believe there is more gains or improvement possible, or hope of better care, do just that. Get the care you need for the quality of life you deserve.
Categories: Self Help
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