The FTD journey an emotional experience filled with grief and frustration, but it is one punctuated by moments of happiness, love, and connection. The following essay and poems by Sandy Moss Moder that capture the intense emotions of her experiences with her husband’s FTD, and the impact it left on her.

The disease called anger pulls like a cat’s claws in a ball of yarn, unraveling, tearing and stretching until it no longer has a taught shape, lying in shredded pieces on the floor. I think of rest and healing, trying to tuck bits and pieces back into the ball to recreate the shape of a sphere, looking better, more whole, although disheveled.

I sit across the room and watch him sleep and fade away. I will never fully understand the disease trail left behind, only occasionally seeing the truth of how it affected him or his personal thoughts and feelings on having this disease. The FTD anger, resentment, and fear translated like a film over us. Watching and listening to the rage of his inner turmoil roared towards my face like a hot wind. I wanted to turn away and run. But I stood and felt the hot air and voiced my sadness and loneliness. He said he wanted to be left alone. I lived no longer within his scope of awareness. I tried to enter back in, begging, crying, swearing, hoping. I gave up the fight and left him at the place he now resides, the inevitable decline to come in fits and spurts, falling to another lower plateau until there is nowhere else to go but to take his last breath. That I cannot fathom today – not yet.

Night Moon
Black sobbing night
Full moon covered with clouds
Heart within collapse
Breaking, mourning
Cannot breathe past what is gone
Need, held, loved
Honored, cherished
Hopeless needs
Couples holding hands
Laughing
Gazing into each other’s eyes
Alone
Weighted
Turn and tell self
Do not think
Do not feel
Watching and hearing
A muted mind
Deadened and helpless
The ship sinks
I watch from the shore.
–Sandy Moss

There is a cost to choosing to care: a painful, emotional, and physical toll. Everything I thought I knew didn’t seem to be true anymore. I could not care for him, care about him, without love best known among the emotional highs and deep lows within, experiencing everyday happenings. I know that I gave all I could to keep him safe and cared for. There were two in this living with the disease: Norm with the disease and me on the other side doing the caregiving. A lopsided affair, one receiving, although not always wanting my care or showing any gratitude, and one of giving, sometimes unwillingly and frightened.

After his testing and diagnosis in 2014, I sought knowledge about frontotemporal dementia. Many of the physicians gave little information to us. Sometimes, they admitted they knew little more than a paragraph in their medical textbook. A book here or there talked of the clinical terminology and possible manifestations of the disease, but I needed more information. The doctors would say, “Don’t say this, don’t confront; distract, and keep him safe.” Then I ran across AFTD and began receiving the newsletters. I would devour each periodical, searching for identification of what continued to happen in our lives –and also to see what scientific progress was made in clinical tests and trials.

There were no right answers to the disease behaviors. I would flounder with the challenges as they progressed. It takes courage to feel along the way, and an element of trust to take the next step forward and know you will find solid ground for now. The need for problem-solving increased to the point my head hurt. I learned to release, through feelings, what will never be again with the two of us. Sometimes it was awful, sometimes we laughed. Sometimes, I curled up in a ball and watched the downward spiral. Then someone listened, cared, and hugged, or sent a note with the exact words I needed. Sometimes, I got it right in the care I gave to him, but then I could not do it all and felt guilty. Sometimes, I screamed into the night. Sometimes, I wrote in my gratitude journal. On many days, I wrote exactly how the day progressed.

I could not seem to find my equilibrium; the foundation of all that stood firm within the relationship was mostly gone. The ground rises and falls, my footing uneven. One cannot keep up. I felt sadness as I watched his life slowly move along like an inevitable train wreck. Dementia is not a peaceful place to live, with the agitation and turmoil existing within his brain.

“Since I now have more energy than he, I find myself running twice as fast. Partly because all that energy is bottled up in me – and that isolation…do errands…as an escape, I suppose…a new and different unbalance in our relationship.” – Anne Morrow Lindbergh.

As the day wore on, he came out twice into the kitchen, yelling, “You’re going to hell!” I think he is feeling lost when he says these negative words. I stand there, starkly alone. He used to be so different, so caring and helpful. When he went back into his room, I fled to mine, locked the door behind me, and sat on the side of the bed, knowing more will come. Beyond our wedding vows, I felt I should honor him with care, for he remained a person of value, to do my best for him. I did not stop caring for his well-being, but sometimes, I wanted to run away from the long haul.

Before I could no longer leave him alone, I would go to the grocery store to get out of the house, touching tangible oranges, pears, and apples in the produce department. I would see people looking about, putting grocery items into the carts they pushed down the aisles. Normalcy. I looked for moments of goodness, smiles, sun on a spring day, freedom from worrisome thoughts, and the urgent thought that I need to do one more thing before I can sit down for the evening.

I will survive, but we cannot win this battle. No cure exists. The disease takes its course. There remains much more to understand about FTD, but sometimes, I was not wanting to adjust one more time. He saw me as his enemy, no matter how hard I tried. He became self-centered, dependent, his FTD ordering me about to do this and that: expectations beyond reason, time, and energy. In the midst of surviving, I wanted more. More than grieving and sobbing. I looked to inner wisdom and strength to understand the brokenness of our lives, the shadow of loss hanging over our heads. Some days, I question if I can handle it anymore.

I found a day with little to do. I decided to purchase a couple of plants for the patio pots, adding to the spring colors of white, orange, and red glory in my back garden. I purchased a large tangerine and some ham and cheese for lunch. The sun warmed my spirit; the dogs played and chased sunbeams and early flying insects. I sat on the swing and found myself relaxing. I went shopping and bought a pair of orange shoes. I sat on the porch rocker. So this is how the day remained: to rise, blow off the hurt and exhaustion, write, and find peace at bedtime. And as I walked outside, there, up in the night sky, a quarter moon hung low, a bit of a halo surrounding its light. A couple of bright, distant planets glowed in the dark. Out of the week-long gray clouds and rain, the clearing brought the reassuring lights. Today, I needed the constant of the night sky, for my heart has fallen into sadness.

We live separately now. FTD wants to live without me. He says it is peaceful. Behind the closed doors of his in-home apartment, and later assisted living, he does not wonder what I am doing, thinking, or feeling. I feel the loss of each decline, my grief strong and intense. Strange that he sits three feet away from me, but I feel like a ghost that lives in this house. Another day, another moment. Then, a note of kindness he wrote shows up on the kitchen counter. With the help of a friend, he brought me grocery store flowers. And I hold these moments deep within.

Our home is now an assisted living facility. I am the Executive Director, Finance Director, Medical Director, Medication Dispenser, Chef and Kitchen Detail, Transportation Director and Shuttle Driver, Facility Management and Staff. Most needs are met, but as with most assisted living personnel, burnout is prevalent. The option to look for other work is nonexistent.

I feel thirsty as if the fallen tears have left my body bone-dry. I get up for a glass of water and lie back down. I feel sadness all over the place, hanging like a gray dense fog. So sad that Norm deals with this disease every day, taking away his intelligence and vibrancy, his very essence. As he holds his out-of-control hand, I see his tremors as they worsen.
I have little elasticity left to spring out and back. He spouts that I have all the control, but little does he understand that I have none – only fear of the ticking time bomb. And his volatility escalates. My spring has sprung. I lay in the dark, angry, feeling alone and uncared for, the two of us beyond repair. There seems too much to forget.
I can hardly remember how life used to be. I made homemade ice cream for Norm’s birthday. I wonder how many more birthdays he will have. The last activity he still enjoys with me is going for ice cream.

He began falling on Monday, saying the sheets were slippery. I visited each day, sensing something changed. By the fifth day, he fell and could not move, like an infant. After four days in the hospital, he returned home to assisted living. Family and friends came to say goodbye. I would stroke his arm and say, “I love you.” All the hurt and despair fell away as I focused on his final care. The evening before he passed away, I held his limp hand and said, “I love you.” He opened his eyes and whispered, “I love you,” and lightly squeezed my hand. We held for a few seconds. On May 16, 2019, the end came. I stood in the darkened silence of the room in his apartment, alone, frozen in place. Now what do I do? I said out loud to myself, “Just go home, Sandy.” I closed the door, walked out of the building, and headed home. The only color of the night: red and green traffic lights.

I kept a record of what happened in our lives to share what we experienced and learned, making his life count for something. To show the fear, grief, doubts, change, and mortality. To show what sustained me while FTD had control of our lives.

Each evening, as I let out the dog, I look up to the night sky, searching for the moon still shining.

Ancient Moon
The ancient moon hangs high
Ever eternal, ever nocturnal
Spider web clouds diffusing light
Strength, power, immeasurable in its fullness
More than I feel
–Sandy Moss