TAMPA, Fla. — Alzheimer’s doesn’t just affect the person who’s been diagnosed, but often their loved ones who surround them with support and care, sometimes 24/7.
Mary Daniel knows all too well the challenges of being a caregiver.
“I wouldn’t trade this for the world,” said Daniel. “Being the person that gets to sit with him and hold his hand and rub his back is something that I cherish, even when it’s the saddest thing I’ve also witnessed.”
Daniel’s husband, Steve, was diagnosed nine years ago at the age of 59 with Alzheimer’s.
“He went to the wrong city for a conference, and he called me with the fear in his voice that he knew something was wrong,” said Daniel.
In 2019, Daniel said she placed him in long-term care, calling it the hardest decision she’s ever had to make. Still, she’d go and visit with him in the evenings.
“We would watch the same television that we’ve watched our whole marriage. We’ve been married 26 years,” said Daniel. “I did that on March 11, and on March 12, they called me and said you can’t come back.”
Daniel grabbed headlines in 2020 after taking a dishwashing job at her husband’s facility as a way to see him.
“After 114 days, I walked through the door,” said Daniel. “He turned around when he heard the door open, and the first word out of his mouth was ‘Mary.”
Daniel, who is also the Founder of Caregivers for Compromise, acknowledged it’s a difficult role because every day, you’re faced with new decisions.
“As difficult as it can be emotionally, physically, financially, I think that there is such great honor in doing the right thing and caring for someone that you love,” said Daniel.
“As this disease progresses, it becomes absolutely overwhelming for the caregiver,” said Eileen Poiley.
Poiley is the Director of Education at the USF Health Byrd Alzheimer’s Institute. She said the benefit of joining support groups, going to caregiver programs or workshops, and learning is critical.
“I can’t tell you the comments that I receive from caregivers that say if it wasn’t for this group of people, I don’t think I would’ve made it,” said Poiley.
Poiley shared they have a very active support group, offer workshops, and even have a caregiver podcast.
“We really just don’t want to see caregivers doing this alone,” said Poiley.
Both experts and caregivers like Daniel want other people to know that help is out there, and no matter what, you are never alone.
“Get help when you need it, ask for help when you need it, get support from people going through it, but always know that you can do this, and when you’re finished, you will be a better person because of it,” said Daniel.
If you’re not sure where to start in looking for help, Poiley suggests calling the Florida Department of Elder Affairs’ Elder Helpline at 1-800-96 ELDER (1-800-963-5337). She also recommended the national Eldercare Locator helpline at 1-800-677-1116.
USF Health’s Byrd Alzheimer’s Institute has a number of caregiver resources you can find more information about here.