Joan Uronis turns Alzheimer’s diagnosis into a way to help others.
A few years ago, Joan Uronis of Hudson started noticing she was having trouble remembering everyday things.
Her primary care physician attributed it to possibly being job-related, as she was a general manager in a hospice facility. The physician suggested that she also go see a neurologist, who determined her condition was a mild cognitive impairment. The doctor mentioned this could be a precursor to Alzheimer’s disease.
Two years later, after another exam, along with a PET scan, Uronis received a call from her doctor, who said she did indeed have Alzheimer’s.
“I was shocked. A terminal diagnosis is a hard pill to swallow at age 62,” she says. “I had two choices. I could sit there saying ‘poor me’ and wait to die, or I could continue to live. I am dying to live.”
Uronis is not alone, more than 5 million people in the U.S. are living with the progressive disease, which causes loss of memory and other intellectual abilities. It is the sixth-leading cause of death in the country. And Uronis isn’t a stranger to this disease, as she served as a caregiver for her mother who was diagnosed with Alzheimer’s. Her uncle also had the disease.
In response to her diagnosis and her will to make the most of her life, Uronis has become a voice for the people with the disease by getting involved in the Alzheimer’s Association Greater East Ohio Chapter.
“I believe whatever is handed to me, I can turn it into something that benefits others,” she says. Working with the organization gives her a lot to do. “I couldn’t be more pleased and honored to have the opportunity to work with them and get their mission across.”
Helping Family Members Understand
Through taking care of her own family as well as countless others at hospice where she was employed, Uronis understands the difficulties in caring for and communicating with loved ones with Alzheimer’s.
“Be supportive of a person with Alzheimer’s,” she advises. “Let that person express their feelings. You need to be a good listener and listen to their fears.”
In fact, she and her husband Al also learned through the Alzheimer’s Association how to communicate with each other.
“I talk to him in a different way,” she says. “I let him know what my frustrations are.”
Programs such as the SHARE (Supporting Health, Activities, Resources and Education) program at the association are designed to help families prepare for the future.
“With the SHARE program, they talked to me and Al separately,” Uronis says. “To start planning. (They asked me) who I want to take care of me, if I can’t take care of myself. The choice was my husband’s and mine.”
Also try to still “take time for yourself, and live the life (you want) with your partner as much as you can. Make a bucket list of some of the things (you) still want to do.”
Uronis says the caregivers have to come into that person’s world because they can’t go back into theirs. “It’s very hard to understand,” she says.
An example she provides is by using an ordinary occurrence in everyone’s lives — losing your keys. While most people can retrace their steps or look in common places the keys might have been set, it’s not the same for those living with the disease.
“We don’t know where to go or where to start,” she says. “It’s a blank slate. I would put it in the same place all the time, if I could remember that same place.”
Taking Care in Advanced Stages
As Alzheimer’s disease becomes more severe, cognitive thinking worsens. According to the Alzheimer’s Association, personality changes may take place and individuals may need extensive help with daily activities at this stage.
Caregivers are not only dealing with physical difficulties of their loved ones, but are also struggling with their own emotions.
“This disease not only impacts the individual, but the whole family,” Uronis says. “They can’t get paid for what they do. It’s so much work, time and energy and so much out of their own pockets to care for their loved ones.”
It’s OK to take a break from everything. Area support services help give the caregivers a breather — time away to think or just take care of themselves and their own needs.
For more respite information, Uronis suggests looking to local churches, neighbors and/or adult daycare centers.
The Ohio Department of Aging is working with the Ohio Family Children First Council and the newly formed Ohio Respite Coalition to enhance respite services across the state.
It’s also a difficult experience when a mother, sister, father or brother doesn’t remember loved ones’ names.
“She may not know your name, but you (still) have a special place in her heart,” Uronis counsels. “You are someone special to her. It’s so important for people to understand, just because you lose your memory, you don’t lose your heart. The disease has taken their memory, but you will always be in their heart.”
Children not familiar with nursing home facilities, may be uncomfortable on initial visits.
“You have to be realistic with (the children).” she says. “Just sit with Grandma or Grandpa, hold their hand, tell them you’re their grandchild.”