SOUTHWEST FLA. — When we talk about Alzheimer's and dementia, a lot of focus is often times on the person diagnosed. But that person's caregiver takes on so much. Fox 4 Anchor Lisa Greenberg talked to her Grandma about what it's like to be a caregiver for her husband who has Alzheimer's disease, and when she knew she needed help.
“The stress of 24/7 is a lot," Terry Wilgus Knisely said. "Especially if the people are close to the same age. I told Stanley, 'You should've married a younger woman! She could have taken better care of you then I could,'" she said.
She was, of course, joking. But she said with her being 79 and Stanley being 80, it's difficult.
"Especially when it comes to isolation, personality changes, the incontinence problem which comes along with it," she said. “You lose you lose yourself. You do. Your life becomes the life of a caregiver, which is is a very worthy position but it's very stressful.”
“There's over a billion hours of unpaid caregiving -- of family, friends operating as a caregiver -- that's happening every year," Susan Nimnuan, the Vice President of BrightStar Care in Fort Myers and Naples, said.
That number is only for Alzheimer's cases. Nimnuan said that's why it's important to understand the signs of caregiver burnout.
"Are you still taking care of yourself? Are you putting your health aside? Are you not sleeping? What are the impacts on your life? Because if you're not able to fully take care of yourself, you're not able to fully care for anyone else," she said.
She said a caregiver who's burnt out may get frustrated and stressed.
"If you find yourself snapping at your loved one or getting frustrated, or trying to rationalize with them, maybe it's a little much for you and a little help, a respite to just give you a break, would be wonderful for you and wonderful for your loved one,” Nimnuan said.
Terry said she realized she needed a little bit of respite when she noticed her entire life revolved around making sure Stanley's needs were met. That's when she started with an adult daycare in Port Charlotte once a week.
"It's fairly expensive if your insurance doesn't pay for it, which most of them don't. But it was worthwhile," Terry said. "I didn't realize until I did that, how much I needed it. Just knowing that I didn't have to take care of anybody but me for a while."
Nimnuan said people in Terry's position need to check in on themselves regularly.
"Really have an honest conversation with yourself of ‘Is this too much for me? Is an aspect of my life being impacted?’ And understanding that it's not selfish to say, ‘I’m not having enough time with my my children, or my family,’ or whatever it may be," she said.
For Terry, that conversation came from her family and Stanley's family. They encouraged her to consider a long-term plan.
“It takes a lot of patience and a lot of love. It's a very worthwhile thing that you feel like you're doing. But you can only do it for so long," she said.
She said she knew Stanley deserved care that was more than she could give. And with the support of their loved ones, she transitioned him into a home that specializes in dementia care.
"Probably the hardest thing I've ever had to do, because it's someone that you love. And you want the best for them. And I am comfortable in the decisions that were made that we did the best we possibly could for him," she said.
For more information on Alzheimer's Disease and the resources available, you can call the Alzheimer's Association's 24/7 helpline: 1 (800) 272-3900.
