Our Frontotemporal Dementia Journey
A long, hard road . . .
Tonight I am a weepy mess. I can’t even rationalize why. There are so many emotions. I took my husband to a simple doctor’s appointment to draw blood this morning. I looked over, and he had tremors. It was a new symptom. One I had not noticed before. His head was shaking front to back.... Continue Reading →
Today is Easter Sunday. It doesn't look like a typical Easter. We are in the midst of a world health crisis like no other in our lifetime. Storms are raging outside my window. Storms. It's a great metaphor for my feelings today. Secretly, I am relieved that folks can't dress up in their Sunday best... Continue Reading →
He doesn't remember. He doesn't remember our current house. It's one he lived in for over two years. He's only been in memory care three months. He was still driving a year ago. He is slipping away. It feels like the declines are accelerating. Yet, he still says every day that he is getting better.... Continue Reading →
A little over a month… that’s where we are on my husband’s placement. Two family members have alluded to his placement as being an opportunity for the kids and I to be free to live our charmed life. They’re wrong. Dead wrong. There is nothing charmed about placing your husband or father in a memory... Continue Reading →
Do I start from 22 years ago when I first met my husband, and he shared that his dad had passed from early onset Alzheimer's (incorrect diagnosis but the closest the doctors could get to the real disease at the time)? Do I start from 10 years ago when my husband started exhibiting embarrassing child-like... Continue Reading →
It is easy to wallow in the negative emotions. There are many. It happens often. But, in peeling back the layers, there are many blessings as well. We've been on a journey of self-discovery. One that has reshaped our family's priorities. One that has bonded us through grief. Finding and embracing the blessings have pulled us through the firestorm of the first two years post-diagnosis.
My understanding of love has changed in nineteen years. It's no longer the simple shared emotion of young people with a life full of promise, the wonder at starting a family.
Yesterday was another trip to Vanderbilt Hospital in Nashville. It's a two hour drive on a good day. It's two hours to reflect on the limited conversational abilities of my husband. It's two hours listening to comments about the passing billboards and buildings that have no real relevance to our lives. Yesterday, the trip was... Continue Reading →
I'm asked all the time about how my husband is doing. He has a degenerative frontal lobe disease called FTD (Frontotemporal Dementia). As suggested by someone on a FTD forum for spouses, my response will now be, "Would you like the 5 second or 5 minute answer?" Either response is absolutely fine. I have no... Continue Reading →
Standing on the wooden platform of the Chicago "L," I wondered if I were strong enough to face the AFTD Annual Conference. AFTD is the non-profit for Frontal Temporal Degenerative diseases.
Over 350 people from 32 states and multiple countries were in attendance at the conference. One thread connected us all - FTD.
Our Frontotemporal Dementia Journey 