Steamboat Springs Janet Panebaker first noticed signs of Alzheimer's in her mother when the 85-year-old woman could no longer orientate herself between Howelsen Hill and the Steamboat Ski Area.
"I said, 'Mom, what's going on?' and she said at that point, 'Something is wrong with my brain,'" Panebaker recalled.
"I told my mom she should talk to my dad, but then my mom didn't talk to him, so I kind of encouraged the conversation to get started. She knew that something was different and that it was scary, so we talked about it quite a bit, but I wanted it to be her to be the one to talk to my dad about it."
Panebaker's mother is one of 64,000 people living with Alzheimer's in Colorado, according to the Alzheimer's Association. The disease destroys brain cells, causing problems with memory, thinking and behavior that render those diagnosed with Alzheimer's eventually needing full-time care.
Panebaker's 89-year-old father serves as her mother's full-time caretaker in an independent living center on the Front Range. Talking with her mother about the disease was the first and easiest step in the process. Talking with her father was much more difficult.
"He is an engineer, and he doesn't like to talk about things," she said. "But it's important for me to understand what he goes through, and I pass him as much information that's available to help him in his care of mom."
The first diagnosis
A short time after the Thanksgiving visit when Panebaker first noticed some changes in her mother, doctors conducted a series of tests - including a CT Scan - to determine the health of her mother's brain.
"All the tests came back and the neurologist said she was OK," she said. "And then I noticed next summer during a geriatric field trip with my parents to Kansas that my mom was not able to navigate for me like she used to."
Panebaker said doctors later attributed the memory and concentration problems simply to old age, but her intuition told her otherwise.
"That's when I called the Alzheimer's Association," she said. "She still does very well on the memory test, but don't ask her to go find the toothpaste. It's not normal and part of getting older, and you can tell in a loved one."
Joan Lucas, social services coordinator at the Doak Walker Care Center in Steamboat Springs, said even family members have a hard time noticing the subtle changes associated with dementia. Alzheimer's, which accounts for about 80 percent of cases of dementia in people older than the age of 75, afflicts almost 50 percent of those who live at Doak Walker.
"We all have memory problems and we all have a day where we forget what's going on, but in retrospect, a lot of families will say to me, 'Knowing what I know now, I saw these signs a few years ago. My mom was forgetting things that she was making excuses for.'"
As the disease progresses, Lucas said the signs become much harder to ignore or excuse.
"Sometimes it is what seems like a personality change, and it may not seem like your mom or dad anymore," she said. "They may not even remember you."
Lee Dickey, Doak Walker's administrator and director of nursing, said safety also is an issue if Alzheimer's sufferers are not diagnosed at an early stage.
"That's when people start leaving the stove burner turned on or going places and forgetting how to get back home," she said.
Struggling with care
The challenges change as the person progresses through the disease, Dickey said, but the biggest step is trying to provide care to those suffering from Alzheimer's once they start forgetting the ones who love them.
"It is different than a physical illness because it is easier to understand a physical illness - it's still the person you knew," she said. "With Alzheimer's, or any forms of dementia, as the disease progresses, what they lose is their personality. That is more heartbreaking for friends and family than physical decline."
Dickey stressed taking care of the needs of those suffering from Alzheimer's at Doak Walker is done on a case-by-case basis. Some residents need a strict schedule developed by staff, while others need to stick with their patterns developed over the years.
"One thing we try to do here, which would be like in a family environment, is be consistent caregivers," she said. "Our staff, for the most part, always work with the same group of residents every day they work. The residents start seeing the same faces day after day. They may not know their names, but they know the blonde one may be really nice."
Having a consistent caregiver is important to establish a routine, which Panebaker said can be a tough job for any caregiver.
"It worked out this fall for Mom to come and spend 10 days with me," Panebaker said. "Dad went to a college reunion back in Illinois, so I got to be full-time caregiver for 10 days, and it was exhausting but fun. It was like going on a great vacation where you are busy all the time, but you are always watching out for things to happen. I learned so much about what she needs over those 10 days and what my dad has to do."
Panebaker said that when her mother was first diagnosed with the disease, she didn't know where to turn for help until she was referred to an Alzheimer's caregiver support group in Steamboat Springs facilitated by Barbara Bronner.
"It's a small group and it's been so valuable to hear what other people are doing," said Panebaker, who noted about six people regularly attend the monthly meetings.
"I thought everybody would be on the same step or at least the same road we are on in my family," she said. "But in the group, there are currently three different patients we are talking about, and they are all completely different. You can see your own situation in each of the other stories though, and it is very supportive to be able to tell your stories, but to also see where my mom may be going."
Bronner, a licensed clinical geriatric social worker, said the group is a good place to brainstorm about different care-giving strategies.
"The group is a very warm and accepting atmosphere," said Bronner, whose father-in-law was diagnosed with Alzheimer's.
"There are times we can laugh about things because we understand what we are saying, and there are times where people will cry. It's a very safe environment where people feel free to talk from the heart."
Panebaker said the group, which meets at Yampa Valley Medical Center, is a diverse group of people who have all come into each other's lives through the common bond of Alzheimer's.
"One of the things I talked most about at the early caregiver support meetings was the fact that Dad wants to do everything," she said. "He doesn't want help. His thinking is that, 'It's always been the two of us and we can take care of this, too.' What I've learned is that it's way too much for one person to do."
Panebaker is apprehensive about what lays ahead for her mother, but she noted the family, including her mother, are taking the disease in stride.
"What struck me that is very cool is that my mom and dad have always laughed a lot, and Mom is still able to talk about this and laugh about it," she said. "But she is progressing. She no longer says, 'Something is wrong with my head.' She has kind of accepted that. It was really scary for her at first, and she has gotten past that."
Two years into the disease, the family moves forward, and Panebaker's mother still retains moments of sharpness.
"My mom has always been the one to find things and remember who was doing what, where and when," she said. "One of my first senses was thinking that my mom's dementia and who is going to help me find my mittens? But she remains very lucid. My dad and I will discuss something with her and she'll come up with an answer that will make us think, 'Why didn't we think of that?' You just don't know what is going to be a problem, but you can still laugh about it."