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Dementia makes caregiver out of a daughter

This photo of the Smith family was taken before Craig Smith was diagnosed with Frontal Temperol Dementia. The family remains close as they navigate a reality none of them saw coming. It is a favorite of his daughter Emily, who is her father’s chief caregiver. From left to right: daughters Caroline Smith and Emily Smith, son Charlie Smith and his wife Kate, Jennifer Smith and Craig Smith. (submitted photo)

Emily Smith could not have foreseen how her life would change just a few short years ago. At 26 years old, she went from being a daughter at the start of her professional career and a fiance preparing for her wedding to a caregiver for her father, someone who had always been there to take care of her and her family.

Craig Smith is 53 years old and has been diagnosed with  FTD — frontotemporal dementia, a debilitating neurological disease. According to the Alzheimer’s Association website, FTD is a group of disorders caused by progressive cell degeneration in the brain’s frontal lobes (the areas behind the forehead) or its temporal lobes (the regions behind the ears). The cell damage leads to tissue shrinkage and reduced brain function in the areas which control planning and judgment, emotions, speaking and understanding speech, and movement.

The disease usually develops in people in their 50s and early 60s and is often misdiagnosed. There is no cure and treatment is confined to the symptoms of the disease. Once considered rare, it now accounts for up to 10 to 15 percent of all dementia cases. In those younger than age 65, FTD may account for up to 20 to 50 percent of dementia cases.

The Smiths have lived in Hudson since 1988. Craig and his wife Jennifer have three children — Emily, Caroline and Charlie. Craig worked as an ironworker, a difficult physical job, all over the Twin Cities area. He was also a member of the Hudson Fire Department as a volunteer firefighter for 26 years.

But Craig’s behavior began to change as long ago as 2007. It was a gradual change at first but progressed over time. He wasn’t the man Emily grew up with. He said and did inappropriate things, had very emotional outbursts, angered easily and did impulsive things.

The family started consulting doctors but were unable to get a diagnosis until a few years ago. They tested Craig for diabetes, Parkinson’s disease, even syphilis, but couldn’t find an answer.  Finally getting a diagnosis of FTD was difficult, but despite the cruelty of it, at least it explained what was going on.

With two of their children still at home, Jennifer Smith had to make the difficult decision to separate from Craig, ultimately divorcing him. Emily says her mother did what she had to do to keep her children in a safe environment as well as provide for the family financially as Craig’s care increased.

“I don’t want anyone to think that my mom divorced Dad just because he has dementia. She did what was best for our family both then and in the long term, and I support that decision,” said Emily.

The role of primary caregiver is now Emily’s, a customer service representative at Regions Hospital in St. Paul. She gets support from her mother and siblings, but she is the one making the decisions for her father. For a time, Craig lived with his own father, who had a difficult time accepting what had happened to his son. When he passed away, Emily needed to find a new, safe place for her father to live, and she found it in the Red Cedar Canyon assisted living facility. He moved there in 2015.

“It has been a great place for him and right here in Hudson. The staff really seems to understand FTD and know what they are doing. Dad is pretty popular and helpful to the other residents. It’s a good feeling to know he is somewhere safe and where they treat him with kindness and respect.”

Emily credits St. Croix County’s dementia specialist Nancy Abrahamson for getting her through the tough transition from daughter to caregiver. She describes it as a long process of not only educating her about what was happening to her dad but getting him to understand that he had dementia.

“Nancy really helped me understand what had happened and what was going to happen. I found myself in a position I never expected to be in — the caretaker for a parent. Nancy explained that  a lot of people don’t understand what dementia looks like and don’t understand that the behaviors are part of the disease and not who the person really is.”

Emily says her dad tends to stare at people when they are in public, “because he is trying to figure out if he knows that person or not.” She knows this can be unnerving to people and she said he often “gets the look like he’s creeping them out.”

“That hurts. I know they don’t understand but I just wish people wouldn’t judge so quickly. Sometimes I feel like I have to say, sorry, he has dementia,” Emily said. She said if he came in dressed as a fireman, those same people would look at her father as a hero.

Craig Smith does remember a lot about his life before FTD — people, events and his grandson. But the prognosis is not good, and Emily says it is hard to know that one day the disease will take him and there is nothing she or anyone can do to prevent his premature death.

Her biggest hope now is that he will be able to walk her down the aisle at her February wedding.

Emily regrets that it took almost 10 years before her father was diagnosed, and she speculates what he would be like today if he had been treated for all those years.

Emily hopes to reach out to other young people like her who find themselves in a similar position. She says there is so much to learn, not just about the disease of dementia, but about all aspects of caregiving.

She has spent considerable time on estate planning for her father and the family, getting his power of attorney learning how to get him the assistance he needs, protecting assets for her mother, insurance issues and how to extend what they have for as long as possible.

“When you are 25 you aren’t equipped to do all that, but you have to. It is as big a part of it as dealing with stress and grief the disease brings. People my age don’t get that but I think more and more of us are going to have to learn about it.”

Craig Smith is one of the co-chairman of the 2016 Walk to End Alzheimer’s in New Richmond on Sept. 17. (See separate story for details). Emily will be with her father and accepts her new role in his life.

“I’m my dad’s person,” she said. “His life’s going smoothly because I’m there, and I’m glad about that.”

For more information go to the Association for Frontotemporal Degeneration website to learn more about the disease and the latest in research

Meg Heaton

Meg Heaton has been a reporter with the Hudson Star Observer since 1990. She has a bachelor’s degree in anthropology and Native American Studies from the University of Wisconsin-Eau Claire.

(715) 808-8604