Building a Life
My first date with Mike was a walk across the campus soccer field on a cool September night. We sat on a blanket talking for hours, watching the stars and drinking wine out of big red party cups. Mike sat extra close to me, using the excuse that it was “cold out.” And even though that night was heavy with the promise of romance, he was too shy to try to hold my hand on our walk back to the dorms.
Mike made friends wherever he went and he was always quick to lend a hand. His big laugh, outgoing personality, and open heart made it easy for me to fall in love with him.
Married just months after graduation, we spent our twenties sharing one old Buick, going to graduate school and plotting and planning for our future. We settled into a 3 bedroom home and Mike became a high school theology teacher while I was working as an evaluation specialist for the state child welfare agency. Most weekends we hosted dinner parties for friends and had Saturday afternoon dates at Home Depot. I remember one morning waiting in line at our regular bagel place before work and Mike leaned down to kiss me, and it was like a Saturday night kiss on a Tuesday morning.
We were a happy couple. Eventually the love that we had for each other became too big for just two people. Weeks before our 5th wedding anniversary we found out that a baby was on the way.
It was during my pregnancy with our son Noah that things began to change. I noticed that Mike was becoming socially withdrawn and he rarely wanted to talk. His behavior became erratic and unpredictable. He purchased things we couldn’t afford, walked for miles in the middle of the night and began having trouble meeting deadlines or following the dress code at work. I started getting phone calls from Mike’s friends wondering if he was “mad at them.” Mike was different, and I didn’t know why.
In September of 2008, I accompanied Mike to his annual physical appointment with his primary care physician. I asked, “My husband is acting so weird, does he have a brain tumor?” She was the first of 8 medical and mental health professionals to misdiagnose him.
Mike saw two primary care physicians, three counselors, two psychiatrists, and one neurologist. He stayed overnight at the hospital and spent a week in a secure psychiatric unit. He had many tests. But, it wasn’t until I brought him to Boston in February of 2009 that he was properly diagnosed with Frontotemporal Degeneration.
Mike and I were 29.
Noah was 10 months old.
Diagnosis: Caregiver (again)
4 days after receiving Mike’s diagnosis and letting the weight of that terminal prognosis set in, I returned to work wondering how I would explain all of this to my boss. Wondering what this would mean for my ability to work and support my family.
But, I never had that conversation because I received a phone call that morning from my sister saying that my mother had a heart attack and died. She was 58 years old.
Mom’s unexpected passing came with the expected tidal wave of grief and loss, but carried an added complication for our family. During the past year our father had displayed a concerning level of forgetfulness, agitation, and cognitive issues that were impacting his ability to function at work and at home.
17 days after Mom’s passing, a diagnosis of early onset Alzheimer’s was confirmed for him. At the time, Dad was 59.
The Tidal Wave
The morning after my mother’s funeral I woke up early and went down to the kitchen by myself. I stood at the counter next to the stove and thought about how Mom’s feet had been in the same spot only a week before. I noticed that a sweater was hanging over one of the kitchen chairs. Her sweater. She had likely been the one to place it there. I was suddenly engulfed by the roaring silence that her absence created. The quiet in the kitchen that morning was deafening, reminding me of the way the beach sounds seconds after an angry wave has finished crashing upon shore. I thought of that sound many times in the following months and years after Mom’s death. Carried by the current of swift and irrevocable change, I recognized early on that I wouldn’t be able to swim against the tide. So, I learned to ride the wave.
Decisions were made quickly. I left my job, let our home go to foreclosure and Noah and I moved in with Dad. Because I couldn’t safely care for Dad, Mike and Noah under one roof, Mike’s parents cared for him until I found a skilled nursing facility 9 miles away from us where they could meet Mike’s ever-changing needs. I spent every dime of our retirement savings and relied on public assistance to provide Mike’s care. Every day felt like triage and crisis management, all while I was emotionally vulnerable, experiencing loss and learning to be a single parent.
Currently, there is no treatment to slow or stop the progression of FTD. It began by taking Mike’s personality and his ability to work. Eventually, FTD confined Mike to a wheelchair and made him dependent on others for every activity in his life. This vicious neurological disorder stole Mike’s ability to talk or even swallow. But, he still had a voice.
As Mike’s wife, I was his biggest advocate. I worked with staff and clinicians to develop a plan that would ensure Mike’s comfort and dignity while not prolonging the illness or his struggle. Mike passed away on April 19, 2012 at the age of 33. Just over 3 years from his diagnosis, twenty-one days after Noah turned 4 and only months before we might have celebrated a decade of marriage.
Eight misdiagnoses. No available treatment to stop the progression. A terminal outcome. This is a conversation that has to change.
Taking The Power Back From FTD
After Mike passed away, I felt as though FTD had been all powerful in our lives. Taking Noah’s father. Making me a widow at 32. Forcing me to leave the community and the home where Mike and I had planned to raise a family. And, I was so angry about it. I became determined that FTD would not have the final word in Mike’s life or in my family’s story. In the summer of 2012, I contacted The Association for Frontotemporal Degeneration and offered myself as an advocate and a volunteer. This was the start of a relationship that enables me to be a voice for families and take some of the power back from FTD.
In the past six years I have spoken at colleges, conferences, hospitals, the Massachusetts State House and on Capitol Hill to share Mike’s story and our family’s experience with rare disease. I have become the Director of Caregiver Support Services and Public Relations at the MGH Frontotemporal Disorders Unit. I have been appointed to the National Alzheimer’s Project Act (NAPA) Advisory Council on Alzheimer’s Research Care and Services. I now sit on the Advisory Council of the Massachusetts Alzheimer’s Disease Research Center. I have reached hundreds of caregivers. But, it is not enough. More people need to hear about the experiences of caregivers. More people need to know how they can support their loved ones, friends, neighbors, and colleagues who are struggling with rare disease. We all need to be reminded that resources, support and love are out there.