Posted on June 23rd, 2011
On May 13 my world changed. It was a change I thought might be occurring. It was a change I had been researching. It was a change that I desperately did not want. On May 13, my husband was diagnosed with frontotemporal dementia or FTD. With those words, the care manager became a caregiver.
The journey has been difficult to date, but nothing compared to what lies ahead. In 2009 my husband was diagnosed with hyperthyroidism. He had lost around 25 pounds and was demonstrating symptoms of depression. But being a salesman in the current economy was a daily exercise in frustration to say the least, so I thought I understood. His symptoms were treated but only the thyroid tests showed significant improvement. The depression lingered, and none of the usual medications seemed to help.
There was one symptom that made me quite curious. My husband declined to help with our finances. I would ask him questions about unusual bills or investment decisions that needed to be made, but he said he didn’t understand how I was handling our money. After several attempts to explain my way, I asked him to lay out our monthly payments in a way he understood, and we would talk from his perspective. He never quite got around to doing that.
In the meantime, our loving bond seemed to be strained and sometimes felt non-existent. What in the world was happening??? Was our marriage in trouble? My husband showed little interest in planning anything whether it was a trip to the grocery store or a trip to Mexico. Something was really wrong. Where should I look to find more answers?
Since we had covered the possible physical ailments, I decided it was time to take a look at his emotional and cognitive well-being. I asked his doctor for an order for neuropsychological testing. I half expected him to decline my request; instead he gave the order to me without hesitation. The test results indicated some depression and some deficit in the executive functioning area of the brain – the frontal lobe. Fear set in. This must be a mistake. Surely not MY husband!
From there we visited a neurologist who ordered an MRI. The results were normal for my husband’s age – but we expected this outcome. Then the doctor asked if we wanted to have a PET scan: a high-tech imaging test that looks at the brain differently than an MRI and is more accurate in diagnosing FTD. We said yes; and the scan said yes. Degeneration of the frontal lobe, and some left temporal lobe as well as some right temporal lobe degeneration. Frontotemporal dementia.
Since May 13th, we have attended more doctors’ appointments, adjusted to changes in medication, applied for Social Security Disability Income (SSDI) and quit his job, completed a driving assessment (he passed with restrictions), are very thankful we had decided to buy long term care insurance, and are now living as normal as possible until the disease changes our lives completely.
I will continue my work as a geriatric care manager, but I am closing down both my blog and my podcast session with Kevyn Burger. Both decisions sadden me deeply, but I know I want as much time to be with my husband as I can find. Every minute of every day that I know he is in our home with me makes me happy. I feel his presence even when he’s sitting on the deck reading or vacuuming the rugs or taking a nap. I want to imprint these moments in my mind.
Thank you for being loyal followers.
