Care managers make a difference in the lives of consumers and their families. To highlight the experiences of consumers, guest editor Jennifer Heston-Mullins interviewed a couple receiving care management through a local property tax levy program. Gaye (age 67) and Jack (age 69) have been married for forty-four years. Gaye lives with a progressive condition that causes a lack of muscle control and coordination of voluntary movements. As her condition has progressed, she has experienced increasing difficulty with walking, as well as with personal care tasks such as feeding herself. Gaye has diminished hearing and uses an electric scooter to navigate their home.
Diana is their levy program care manager. Gaye started receiving levy services in 2016 and Jack began receiving services in 2020. In addition to care management, they receive home-delivered meals, respite care, and an Emergency Monitoring Response System. In this brief interview, Gaye and Jack talk about their experiences with care management, the services they receive, and how working with Diana has impacted their lives.
Jennifer Heston-Mullins (JHM):
How did you first get connected with Diana?
Jack:
We were needing help. We live alone. We have three children, but they’re all out of town and, you know, living their own lives. I was looking for some respite care and Gaye figured out we could get on Meals on Wheels if we asked, so we did. And then Diana, she was the person who came out the first time and introduced us to the levy program. At first, we didn’t take it all that seriously, I suppose. Well, we have this need, but we’re still pretty independent. But as time has gone on, we’ve become less independent. If we didn’t have the help, I figure Gaye would be in assisted living by now.
Jack:
We started with Meals on Wheels and we needed help with housecleaning. And then Diana got us on with Help at Home [a service agency]. So now we have help with some of our personal needs. Gaye takes a couple of showers a week. I give her one shower, and then somebody from Help at Home gives her a shower during the week. And then we have some respite hours where I leave and get a little break and go shopping. Help at Home comes in and they clean up things and take care of her.
JHM:
Gaye, you started off receiving meals first through the levy program, and then at some point, Jack, you came on to that as well. What prompted you to start getting meals yourself?
Jack:
Actually, Gaye ate better than I did. When Diana came for an annual review or biannual review, she always came and talked about how we were doing. I said, “Would I qualify for meals now?” And she wrote a few things out and said, “Yeah, you would. Would you like me to get you started?” And I said yes. They’re really good meals. I love them.
JHM:
So, how often do you usually see Diana or talk to her? I know it’s a little different now with the pandemic, but before that, how often were you seeing her face to face?
Jack:
Twice a year, and she would call occasionally. At first, I never took her or the whole thing that seriously, but I came around to realizing, you know, what am I doing? We can’t be independent here. We have to get help. So now I really believe in them and I really appreciate them. And they’ve really helped us.
JHM:
What other kinds of things has Diana done for you?
Jack:
They installed a walk-in shower for us. That was through Diana. We had to pay 50 percent based on our income, so it was a good deal for us. And the respite hours are so important so I can get out and get a break and know that someone is taking care of my wife. She’s a very friendly lady. She loves everybody who comes in.
JHM:
Gaye, during that time when someone is there with you for those respite hours, what are the kinds of things that they do with you or for you during that time? Gaye: Probably the most important thing for me is giving me a shower. One even painted my toenails. And if Jack is gone, they get my meal ready. And they just talk to me.
Jack:
I’m glad they talk with Gaye. I think that’s one of the best things that happens. The folks we’ve had are very personable. They just talk about life and that’s good. But they also get out there and wash a load of clothes, too, and sweep the floors and kind of clean up the place, which I really appreciate. It’s so nice to walk in a house that I didn’t have to clean.
‘It’s so good for Jack. He needs every break that he can get.’
JHM:
What would you say has been the most positive aspect of getting connected with those services and having a care manager?
Jack:
I was trying to figure it all out on my own. I was just stubborn. Mostly I just wanted to do it myself, but I didn’t know what to do. And I felt very frustrated for a long time. And it was probably right there under my nose, but I was looking in the wrong places. At first, I didn’t know what to do. And I was very concerned, and then I finally came across the levy program. So, Diana has helped us get these services in and now we feel like things are running smooth.
Gaye:
It’s very important to me, but I think the reason that I feel it’s so important is because it’s so good for Jack. He needs every break that he can get.
JHM:
So, when you run into bumps in the road or challenges with services, what do you do?
Jack:
Diana will call somebody for us to see what’s going on. Or she’ll at least say to us, “You’re not the only one. Everybody’s dealing with this.” That helps to know we’re not the only ones having issues.
JHM:
Can you give an example of something that you reached out to Diana for help with and she was able to do that for you?
Jack:
With Help at Home. I called Diana and asked if we could switch from four hours once a week to two hours twice a week. And she said, “I don’t know, but I’ll call for you.” And she did, and Help at Home called us right back and asked us if that’s what we wanted. And so they’ve been trying to work on it. It hasn’t happened yet, but I did have Diana go to bat for me on that.
JHM:
Have there been any downsides to being involved in the services or having a care manager in your lives?
Jack:
No. Well, like I said at the beginning, I really felt like I could do this on my own. But I realized that I can get help from a professional. It was hard at first to have somebody come to the house. I’m a little bit of a private person. I don’t want people walking around my house. So, I had to get used to that whole thing. But I’m over that now.
JHM:
Is there anything else that you would like to share with me about your experiences with the services or your experiences with having a care manager?
Gaye:
So, the most important fact is that I get to live with the best caregiver in the whole world. There is no better than Jack and I always count on that, even the middle of the night. And he’s right there for me.
Jack:
Yeah being committed is really essential if you’re a married couple. We’re committed to going this route at home. I’ve thought about, “Oh, let’s just go to a retirement community and forget about it.” And then I go, “No, not for me.” So, we’re trying to do this at home. I think there’s more freedom and I think it’s better for us. We’re just glad to have Diana to help us do that.
*Names of individuals and agencies in this interview have been changed.
Jennifer Heston-Mullins, PhD, LISW, is a research scholar in the Scripps Gerontology Center at Miami University in Oxford, Ohio.
