The Centers for Disease Control and Prevention expects the number of people over age 65 to double by 2030, and the Alzheimer’s Association projects the disease will increase by nearly 27% in Georgia by 2025. Meanwhile, the number of people trained to care for those with cognitive and physical degeneration is not keeping up.
The Rosalynn Carter Institute for Caregiving is working to fill that gap.
Gayle Alston is the director of its training center in Americus. Morgan Rowe of Decatur has been caring for her father, John Rowe, since he started developing symptoms of dementia in 2013. He is now in an assisted-living facility, but Morgan still visits him up to five times a week.
On why former first lady Rosalynn Carter focused on caregiving as an issue
Gayle: It was very personal. Her father had Leukemia and actually passed away when Mrs. Carter was only 13 years old. Then, a year later, her grandmother passed away and her grandfather moved in with them, so she not only witnessed caregiving but she's also very much involved in the caring for family members who had chronic illnesses or frailty. Then, when the Georgia Southwestern [State University] came to her, they said, ‘We'd like to have an institute to honor you.’
She said we need to be doing something for family caregivers because she remembered how it affected her family, and that was back in 1987.
On elder care and finding caregivers
Gayle: Elder care is already falling to families more. Most care is done in the home by unpaid care workers such as family or friends. In 2013, $470 billion dollars in paid care was given. So, we're already shouldering most of the care of family caregivers. Now, the real issue, of course, is going to be, as families dwindle, what's going to happen next.
On realizing her father needed more attention
Morgan: Dad started slipping about 2013 or a few years prior. I'd lost my mom in 2002, lost my brother in 2014, so kind of everything was left to me. But, I started noticing it really in 2013, and then started to take steps to help him. He lived in North Carolina. I lived in Georgia. He was adamant about not moving — abrasive about it, as you can imagine for a man who has lived alone for a lot of years.
On the decision to move her father to Georgia
Morgan: I really started seeing things really getting bad. He'd had a couple of accidents. Bills were a problem; he couldn't pay his bills right. There were a lot of things that I just wasn't able to do from afar as easily. I was traveling every other weekend to go visit my dad to take care of these things and sometimes during the week just because some things need to be taken care of during the week. I knew that he needed to be in a safe place. I was finding food on the stove that had been burnt.
On ending up without the help needed when age or disease curbs independence
Gayle: There's a phenomenon going on now of 'elder orphans,' which are the growing number of people, such as me, who never got married and never had children. And, as my mother used to say as I was caring for her, ‘You don't have a Gayle; who's going to take care of you?’ So, now I have to be planning as I get older for that as best I can figure it out.
There's the idea that the workforce has to grow, and we're going to have to find ways to make direct care working a more appealing profession: honor them for the value that they are and also give them the training they need.
On caregivers getting the help they need
Gayle: Both the family caregiver and the direct care workers need so much more training than they're getting. The family caregivers are going to need the information about the disease that they're dealing with, and then they need training, problem solving and stress management. You know, stress is a terrible hazard for family caregivers. It takes a toll because they forget they set aside anything they’ve ever done in their previous lives that that would address stress because they're putting all their attention toward what their loved one needs.
Morgan: I didn't sleep a lot because [Dad] had Sundowners. Elder patients with dementia or Alzheimer's tend to, when the sun goes down, start walking around, and they become more alert. And, he was opening doors and I just wasn't able to sleep. If it wasn't for my neighbors and friends, I couldn't go to the grocery store or to the gym.
I recognized that I couldn't do it on my own. And even with my dad in assisted living, I was going seven days a week taking care of things with my dad, helping my dad do things [such as] shaving and helping my dad get dressed. All these things and it took a toll on me as well. And, it wasn't until this year that I sat down on the couch, looked around and started realizing that my life was totally on hold. My whole house was on hold; everything was on hold.
My dad's in palliative care now and the palliative care team offers therapy for caregivers and family members. I took advantage of it and it was huge because the therapist said to me, ‘Why do you go seven days a week? Does your dad need you to go seven days a week?’
And, I said, 'Probably not.'
‘Does he even know that you're there seven days a week?’
'No, he doesn't.'
‘Why? Why do you need to have him shaved?’
And, I said, 'I've never seen my dad grow a beard.' You know, all my life, my dad never grew a beard.
So, she's saying to me these are your things and you need to let go of these things. And it was huge for me. It was really huge, and so I was able to kind of step back. Now I [visit Dad] five days a week, maybe four.
Gayle: Let me say kudos to [Morgan’s] therapist because, as caregivers, we do need to rethink our priorities. I'm so glad that she had a therapist to help her rethink that. I see so many times people put their loved ones in a facility for safety reasons and then they feel guilty or they are just so concerned that they spend all their time there, but they do have to let go and start easing back into their own lives.
On creating a better industry for caregivers
Gayle: We as a society need to look at what are we going to do to build up this position so that it gets the honor that it deserves. Now, we can do that first by better wages and benefits, of course, but also by creating easier career ladders for them to be able to move up in the fields because they need that opportunity. More important, they need to be getting more training because, when it comes to dementia care specifically, direct care workers are getting maybe around six hours of dementia education as their certification. And, that's woefully inadequate because caring for someone living with dementia takes some very specific knowledge and skills. And, you can also make the family caregiver and the working caregiver job easier if they know how to respond to those difficult behaviors and how to make the experience easier for everybody concerned.
On the burden of expense
Gayle: I was just reading about how employers don't realize that this is an issue in their workforce. They could be doing things to make it easier for caregivers to have the time off they need, maybe work part-time, and have some additional training and education at their business. Harvard Business School did a survey of 1,500 employees. They found that three out of four people were providing care [to adults or children], and a third of those people had to quit their jobs to provide care. We need to find a way to combine someone's work life with their caregiving because, when you have to quit your job, you not only lose salary. You're losing retirement benefits as well. That will affect them for the rest of their lives. So, really, all aspects of society need to be looking at caregiving as an integral part of what needs to be addressed.
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