The person I knew is gone forever.
As told to Our Health Matters
Tim spoke to Our Health Matters candidly about how his father’s battle with dementia affected his family.
What was your father like before he got sick?
My dad was a very hard worker his whole life. When I was growing up, he always had a full-time job, was part-time National Guard, and went to school to get his master’s degree. He eventually retired from the National Guard as a major but continued to work for the US Army Corp of Engineers as a civilian. Dad was also very active with genealogy and historical groups, such as the Sons of Union Veterans and Sons of the Revolutionary War Veterans.
What tipped you off that he may not be well?
About 12 years ago, he started getting a little “quirky”. He would sing Civil War songs all the time and tell the same story over and over. Then, a few years later, he started telling inappropriate jokes at inappropriate times. He had never done that before.
When was he diagnosed? Did family have to impress on him to go to the doctor, or was he willing to get checked out?
- Increasingly inappropriate actions Loss of empathy and other interpersonal skills
- Lack of judgment and inhibition
- Apathy
- Repetitive compulsive behavior
- A decline in personal hygiene
- Changes in eating habits, predominantly overeating
- Oral exploration and consumption of inedible objects
- Lack of awareness of thinking or behavioral changes
His quirkiness started to affect his job. He had always excelled in reviews, but now he was on the verge of getting fired. At first, the doctors thought he was suffering from depression. Eventually, they did a brain scan that showed there were parts of his frontal lobe that were deteriorating. The diagnosis was frontotemporal dementia, one of the more aggressive forms of early onset dementia. His impulse control was impacted, so he ate constantly, which in turn, impacted his diabetes. He hung onto the memories he had by constantly repeating the stories he could remember. Eventually, the stories became less complex. He would lose the name for words or names of family.
Dad also became aggressive. I think he became frustrated because he could not communicate the way he wanted to. At times, he had to be physically restrained. That was hard.
…this is the continuation of Tim’s story…
How did his illness impact your family?
My mother was the primary caregiver. At first, she was in deep denial about his illness and put off a lot of decisions about his care. We often clashed with her approach and it negatively affected our relationship.
Dad eventually deteriorated to a point where my mom could not take care of him and he had to be placed in a nursing home.
How is your dad doing now?
He is completely non-verbal. My mom visits him occasionally, but I can’t. It is hard for me to see him in his current state. I have come to accept that the person I knew as my Dad has passed away. He is no longer there, in my opinion.
If you are a caregiver or family member impacted by dementia or Alzheimer’s disease, help is available. Visit the Alzheimer’s Association, at www.alz.org, to find a support group near you.
Source: The Mayo Clinic
