As a clinical social worker, I am always interested in the level of care abstraction that defines systems in medical and mental health facilities. As a person who has had more hospitalisations than he can remember, I have learned how to navigate and understand systems of care as a prosumer. As a professional consumer of services, I consider myself really adept at speaking with and communicating with doctors, nurses, and medical specialists.
I diagnosed my father’s dementia five years ago. He was having memory problems. While my dad’s memory was never spectacular, I couldn’t help but notice his memory was worse and not following the normal slope for ageing at the rate and pace he was forgetting. The dementia was slow-moving, and I was finally able to connect my dad with a neurologist, with a full diagnostic workup at a primary care facility and dementia medication. Five years have passed and my dad, while more forgetful, was driving a car, taking care of himself, and getting out and about in the community and functioning well.
A month ago my parents were visiting my home and bringing over breakfast. I received a phone call from my mum who was travelling with my dad 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. Taking the lift down, and walking outside my apartment building, I found my dad clutching a metal pole by the foot of my building. His complaint was he couldn’t walk any further. He was shaking and his voice was 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 ER. The ER doctors were generally pleasant, but after a week in the hospital, we didn’t get a diagnosis. My mum said to me: ‘How do we prevent this from happening again if we don’t know what it is?’ My dad was discharged to inpatient rehabilitation. A week later my dad returned home dependent on a cane, but generally better. Four days later my dad bottomed out. He couldn’t speak intelligibly, or sensibly. He couldn’t walk at all and kept getting up and falling.
Because we were concerned for his safety and knew something was seriously wrong, I called an ambulance and we had him taken back to the hospital. My dad went through more testing, which targeted his brain this time, but nothing significant was discovered. The doctors decided he had developed Parkinson’s disorder, and the prospect for rehab, when the nursing care manager met with us, seemed less than promising. It seemed as if they didn’t want to rehab him or think it would help him much.
As family, we wanted to try, and to hope, that rehab would help strengthen him and, with a new trial of Parkinson’s medication, slow down the progression of his confusion and mobility impairments. He was sent 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 fitted a stairlift and brought in a hospital bed. Due to my dad’s increasing difficulty remembering his own condition and inability to walk without assistance anymore, we hired health aides to watch him at night and during the day so he didn’t fall and really hurt himself further.
Not four days after arriving home, my dad is almost totally incoherent when he speaks and more confused than ever. He can barely stand up. He needs 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 hospitalisations 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. We’re going to need to get him to a tertiary care hospital. He won’t survive outpatient at this rate of decompensation.’ Tertiary care, using advanced specialists, is provided at a major hospital centre, 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 never mind turn and pivot. The diagnosis from the primary neurologist is rapidly progressing dementia. As I said, I pride myself on communicating with doctors and medical specialists. But this whole affair is just as exhausting as a social worker as it is as my dad’s son. This is the third hospitalisation and the last stop on the train for medical intervention and hope of halting or treating my dad’s condition: tertiary care.
Speaking with ER workers, doctors, and other specialists about this rapidly progressing dementia is as taxing as it is beguiling to those listening. Doctors want to know the emergent acute problem. My dad doesn’t have an acute problem per se, but is, in fact, declining so fast that if we don’t act quickly, this outcome will be extremely unfortunate for him and my family. We hope, I hope, that the specialists in this tertiary care hospital will be able to treat my dad or, at least, give us an answer on what really has been happening and why it is happening so fast.
I once understood levels of care as just about access. I now understand them as levels of hope and the urgency of the emergent condition at hand. When you are in need of help, medical or otherwise, keep in mind the seriousness of what you are dealing with and the treatment you get. If you believe there are more gains or improvements possible, or there is hope of better care, do just that and seek the care you need for the quality of life you deserve.
Max E. Guttman, LCSW is a psychotherapist and owner of Recovery Now, a mental health private practice in New York City.