Whether it’s helping an aging parent, supporting a partner through illness or raising a child with special needs, millions of Americans are providing unpaid care to a loved one. And if they were compensated, it would cost around $600 billion a year.
WWNO and WRKF have partnered with the producers of the PBS documentary, Caregiving, to shine a spotlight on America’s caregiving crisis. We talked to people living in south Louisiana about their caregiving situations and the unique challenges the region brings when caring for others.
On Monday, we heard from Marirose Bernard, a registered nurse with nearly 50 years of experience who found that the role of caregiver was just as difficult as anything she encountered in her profession.
This interview has been edited for length and clarity.
My name is Mary Rose Bernard. I'm a nurse, and I am married to Dale Bernard. Since 2022, he has had six surgeries, 21 back procedures and 16 MRI PET scans. During the course of this time, in caring for him, we noticed he was dizzy, he was off balance. He fell over 20 times. And in December of last year, we did get the diagnosis of multiple system atrophy, Parkinson's disease.
There's a timing thing to the medication. When can you eat? When do you take the medicine? Scheduling his PT, scheduling his OT, trying to get him to get up and exercise. Taking blood pressures. You know, we probably take blood pressure, I don't know, eight, 10 times a day.
It's all consuming. It is totally consuming.
I don't know what would prepare someone to step into this role. I mean, if I felt like I was prepared and then realized I wasn't prepared, then who, who could be prepared?
One day last year I was in a weepy mode, an overwhelming mode, and my husband says, “I want my wife back.” And I'm like, “well, I'm still here.” He says, “no, you're my care provider.” And I, I, you know, I, I boohooed, I, I, I lost it. I was very sad and. And I said, you gotta stop this. You've gotta live one day at a time. And I stepped back and I realized, it's not good for your mental health. It's not good for your physical health. I had gained weight, I wasn't exercising.And that was kind of a turning point for me in terms of my role as care provider. I wanted to have the wife roll back too. But I felt guilty because I'm not the one that has the rapidly progressive neurodegenerative disease and needs help. I am okay, but I still felt very guilty in needing some me time and I just had to get past the guilt.
And part of the way I did that was getting help from people, friends, relatives, to come over and stay with him while I went and did something else. And so slowly I could see that it was okay for me to ask for help. You know, I used to wake up every morning and say, “please God, give me patience and kindness, patience and kindness.” And I feel like since I've taken care of me, I'm able to do that better.
Once a patient has this significant of a diagnosis, why don't the provider say, “let's talk about you, care provider. What do you need from me? What questions do you have? Um, it's important to take care of yourself. What can you do for yourself?”
But none of the providers have said that, and I think that's a big thing that's lacking in our care. No one says, “what can we do for you?”
