Difficult Diagnosis Strengthens Couple's Commitment
By Tiffany Eckert
Last week, President Obama called for a National Brain Initiative to focus more funding and research toward education and treatment of cognitive disorders. Scientists keep seeking the answers to what makes our brains work and what we can do when they don’t.
Forgetfulness is a part of life. Why did I walk into this room? What was that guy’s name? As we age, memories can slip through the cracks. So, when does that "fuzzy" feeling in the head become a reason for concern?
Meet Phil and Jane.
"I’ve been diagnosed with short term memory problems," Phil says. "Specifically, um what’s it called Jane?"
"Mild Cognitive Impairment," she responds.
The couple asked that only their first names be used. Phil is 75. He bikes and skies regularly. His condition is an intermediate stage between the expected cognitive decline of normal aging and the more serious dementia.
People with mild cognitive impairment, are often aware that their memory has "slipped."
"I’ve lived in Eugene over 30 years, and I started having problems keeping the street directions and where I’m going in the car," Phil explains. "And the other thing is, that I’m having difficulty with names of some people that I’ve known for a long time."
According to the Mayo Clinic, people with mild cognitive impairment may progress to stages of dementia. But some never get worse and a few eventually get better.
"We go through brain exercises, brain teasers and things like this. I work puzzles. And, it seems to me like intellectually, I’m still there with this memory issue."
Jane adds, "And we try to follow a healthy lifestyle in general with exercise, meeting with friends, a good diet."
Photo: Active Lives, Active Minds Cognitive Wellness Program participants. From Tiffany Eckert.Phil has looked into different drugs with mixed results. He says there are other things he can do to minimize memory loss.
Jane and Phil knew each other in high school. Fifty years later they re-met and got married. Soon after, Phil received his diagnosis.
I asked Jane if she worries about the future.
“I used to have panic attacks," she says. "Does that answer that question? It was a shock, it is a shock. It was a shock to both of us to really face this.”
Phil talks to close friends about his cognitive impairment and he says they look out for him when he needs a little help. Quite different from the reactions people used to have about memory loss.
“Wooey, senile, crazy.”
Despite changes in the way people view it -- memory loss is scary.
“People my age are fearful of it," Jane says. "More worried about that than actual dying.”
Yet, through it all, this couple tries to keep a sense of humor.
“When we can’t find something in the house -- which is very often -- I’ll say you have my problem don’t’ you Jane?” Phil says with a laugh.
“Active Lives, Active Minds” is a program in Eugene for people with cognitive impairment and early to moderate Alzheimer’s disease. Program coordinator Diana Jacoby takes me to an activity room where men and women at different stages of memory loss are engaged in a lively game of charades.
“The idea for the socialization part of the program is just to forget that you have memory loss," Jacoby says. "It doesn’t matter in here. It’s a great equalizer and just can enjoy being together and laughing instead of thinking about and worrying about what’s happening to your cognition.”
Twenty families are served by this program. Participants here use long term insurance or privately pay for the service.
“They do live at home, they all live at home and they come there for a variety of reasons," says Jacoby. "It’s an opportunity for respite for the family caregiver—gives them a little break."
And caregivers need breaks. The CDC found a link between family care giving and depression, anxiety and increased mortality. Last year, more than 17 billion unpaid hours were provided by family and friends caring for people with memory loss and dementias.
This took its toll as caregivers themselves accumulated $9.1 billion in additional health care expenses.
Jane understands she may soon be a part of these statistics. The costs could be high but she's in this relationship with Phil for the long haul.
“We just do not want to be apart," Jane says. "We have a serious commitment to each other.”
I asked Phil if thought the same way. He answered, "I asked Jane, would we have been better off not being together? And I got a resounding 'no!’”
As they head down the path to living with memory loss, the vow Phil and Jane made to remain true "in sickness and health" has never meant more. They don’t know what will happen tomorrow. So they've made the conscious choice to take it one day at a time--together.
Active Lives, Active Minds (Cascade Health)