FOUNTAIN HILLS, AZ — Advocating for their community - and beyond.
Two Fountain Hills women are working to make their town "dementia friendly" so that other caretakers know that they are not alone, feel supported, and have the resources to not just care for their loved ones, but also care for themselves.
Like a key to her past, photos unlock countless memories for Linda Rode, who feels like she has lived several lifetimes before settling down in Arizona.
"It's been an exciting adventure," Linda explains.
And she's done it all with her husband, Paul, by her side.
"He's perfect...and I miss him."
But Paul is still very much alive, married to Linda, and living in Fountain Hills.
"He's there, but he's not," explains Linda.
That's because her husband Paul is living with Lewy Body Dementia.
"I think that losing him is one of the hardest parts," Linda says. "Every day, you lose a piece and you don't know what that piece will be."
It's something Linda has seen up close since Paul's diagnosis in 2020.
According to the most recent data from the Alzheimer's Association, 292,000 Arizonans are serving as unpaid caregivers for their loved ones living with dementia.
"You're kind of a detective. You always have to stay on top of it...and constantly adjust your way of being for them. That was hard."
In 2023, Paul's condition got worse and Linda had to make the difficult decision to move him to a memory care facility in Fountain Hills.
"I said, if I don't take care of me, I'm not going to be there for him. And that's where I think caregivers make the biggest mistake."
And that's why Linda is now advocating for other caregivers, working alongside town leaders to make Fountain Hills "dementia friendly," a designation given by the organization, Dementia Friendly America.
"It gives identity to the word, 'dementia' and it opens up the conversation," explains Fountain Hills Councilmember Peggy McMahon.
McMahon, who is friends with Linda, had been working alongside other town officials to make her town more inclusive to people living with dementia and their caregivers.
"They don't have all the information," explains McMahon. "Every day changes for them."
It's something that McMahon could come to know first-hand.
"When you're hit with it, you're hit with it."
Not long after she began helping Linda and other families dealing with dementia, McMahon's husband also got the devastating diagnosis.
"You watch your husband disappear and there is nothing you can do about it... So to be able to have a good friend already be educated on it, listen, and support and help me was immeasurable."
Dementia may be the ultimate thief, but what these women have come to realize is that there are certain things in life this disease can never take away.
"I feel like I am still leading Paul's legacy of leadership and being a mentor," says Linda. "He would have wanted it that way."
The Town of Fountain Hills will host its second annual Dementia Friendly Fountain Hills Summit on Saturday, February 8, from 8:30 a.m. - 1 p.m. to help connect caregivers to resources. You are asked to register and it is completely free to attend.
For more information, click here.
