My husband, Alan, suffered a massive myocardial infarction (MI) and cardiac arrest at age 62. Alan was resuscitated for almost an hour before coming back to life. The prolonged lack of oxygen caused a severe anoxic brain injury. In an instant, the brilliant professor of physics became a brain injury survivor fighting to regain his abilities to read, write, walk, talk, think and remember. Alan lost all memory of his life, decades of accumulated knowledge, and his identity. We were both devastated, confused and depressed.

The Brain Injury Association of America (BIAA) estimates that 1.7 children and adults sustain a traumatic brain injury (TBI) each year. An additional 795,000 people sustain an acquired brain injury from non-traumatic causes. Alan soon joined the 5.3 million American who live with a disability related to brain injury.

We were visiting Chicago when Alan became ill. He received excellent care in an intensive care unit for one month before stabilizing enough to return home to Boston. The case manager for our medical group practice coordinated communication between doctors, and arranged for an air ambulance flight to transport us home.

Alan participated in three months of superb inpatient brain injury rehabilitation at Spaulding Rehabilitation Hospital. The initial evaluations showed that he had profound cognitive-linguistic impairments, including fluent aphasia. Every type of memory was affected. Alan could neither retrieve a long-term memory nor remember what happened 10 minutes ago. All of his executive functions were in disarray, so he could not think logically or keep himself safe. His personality was changed in both temporary and permanent ways.

Alan’s motivation was unrelenting. He made steady progress in learning the alphabet, walking steadily, putting his clothes on the right places, and relearning the words for common objects. When he was discharged, he was just beginning to speak in short sentences, read a first-grade book, and display his characteristic curiosity about everything.

The most valuable service the nurses, speech-language pathologists, physical and occupational therapists, and neuropsychologist performed was to teach me to carry over every lesson. For every hour of rehabilitation treatment a professional provided, Alan and I did two hours of practice. When he came home, we integrated cognitive rehabilitation into every aspect of our new routines. He continued outpatient treatment with a speech-language pathologist for two months. Eventually Alan read at a third-grade level. With intense effort, he wrote his activities in a daily log book. If he stopped practicing a skill for a week, the skill began to slip away.

Five months after the cardiac arrest, Alan underwent a quadruple coronary artery bypass to relieve the blockages that caused his myocardial infarction. Alan slowly regained his strength, and we built a new marriage and life together.

The BIAA now recommends that brain injury be reclassified as a chronic disease because studies show that brain injury can affect every bodily system, cause other diseases, and make existing diseases worse. That was certainly our experience. Alan developed psychiatric problems, including depression, agitation and even intermittent psychosis. A combination of behavioral approaches and judiciously prescribed medications helped. As a psychiatric RN, I recognized symptoms and intervened early. However, psychiatric problems cause distress for both the patient and family.

Shortly after the brain injury, Alan developed vascular dementia, which further impacted his memory and cognition. He relied on external memory devices such as written instructions and his log book. Even with dementia, Alan made strong gains in language, reading comprehension, and relationship skills for three years after brain injury.

Then Parkinson’s disease (PD) struck. It took months of evaluation to finally diagnose Parkinson’s. We spiraled back to grieve and adapt all over again. Fortunately, Alan’s symptoms responded to medications and physical therapy. However, after a brain injury, it’s much harder to regulate medications that work on the brain and nervous system. Every few months, Alan’s medications for PD, depression and anxiety needed to be rebalanced.

Catastrophic illness is not all about diseases, medication and crises. Yes, we had piles of debt, derailed careers, endless medical appointments, and constant adjustments. But the most important lesson is that we managed to build a new life full of purpose and pleasures. Alan used his teaching skills to become a motivational speaker. He shared his story to bring a powerful message of hope and motivation to patients, families, professionals and the public. Five years after his brain injury he told me, “I have everything I need to be happy – lots of love, a great dog and good books to read.”

Alan lived for seven years after the MI and brain injury. He died in 2005 of heart failure. Our experience led to a few suggestions for case managers:

1. There is a tremendous need for long-term case management. We had a case manager for only the first year. Families need skill coaches and behavioral therapists when new problems arise.
2.  Consider suggesting a palliative care consult as cognitive decline and medical issues progress.
3. Ask the caregiver what she needs to care for herself. Can you arrange a family meeting, respite care, or home services?

These firsthand insights will create a meaningful intervention for patient of brain injury and their loved ones.

Janet Cromer, RN, MA, LMHC, is the author of Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury. Contact: janetcromer2@gmail.com.