Caregiver of the Year Award Winner: Ron Gladis, Malvern, Pa.
Caregiver of the Year Award Winner:
Ron Gladis, Malvern, Pa.
Care recipient: Mariah, Ron's wife
Nominated by: Dori Middleman, a colleague of Mariah's; read the nominating letter.
In Ron's words:
When I feel stressed, I: Breath. I make sure I take a deep breath, almost like a college basketball player will do before taking a foul shot. It helps me relax and see what’s really important.
My current challenge is: I'm getting older. I'm 66. Though I’m still strong, I can see the beginning stages of my body feeling some wear. Recently, my doctor told me I had tennis elbow and golf elbow at the same time. It’s kind of funny since I don’t play either of them. Which means I need to take better care of myself so I’m available.
When I have an extra five minutes: I often sit quietly, almost as in meditation, and focus on how blessed I am to have my life as it is now, with my wife and two sons and the good people, family and friends, who surround us.
My mantra is: Mariah is precious cargo. She can't do much for herself over night, so she may wake me and need help. As I walk her unsteadily to the bathroom, I’m aware that I must pay attention to what I’m doing; that I'm taking care of precious cargo. There is no way I will let anything happen to her.
Recommended reading: Tales of the Wounded Healer by Mariah. One of the chapters in the book is called "Death As the Great Advisor." She talks about the terminal diagnosis and it's affect on her life and her work and what she has learned from the disease. I, too, have learned about my strengths and weaknesses and about how I want to live my life.
The legacy I would leave to another family caregiver is: Love. You have to love. In those times, when it's not easy to love, then you rely on loyalty. I may not feel all that loving at the moment but I will do this because you are my wife. Then, if I'm not feeling loving or loyal (maybe at 3 a.m.), I'll rely on my personal integrity, which tells me this is what needs to be done.
My 2009 goal is: I need to make sure I take care of myself, to sustain myself. It becomes easy to center my life around someone else and lose myself. There are times when I need to say, “No.” It's not an easy thing to say, but I have to say it. I can't right now, I have to talk care of myself, which is really important. A goal for me is to get back to things I need to do for myself. My interests. I want to make sure I'm happy with me, that I'm sustaining me. I can't give to someone else unless I have myself.
Mariah and Ron met when she was 32 and he was 37. They met at a function Ron didn't plan to attend (“I wasn't up to going into the big city,” he says). But he went. They met. They spent the rest of the night talking.
A true love story. But, not one without a wrinkle.
Mariah was diagnosed with Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease) in 1981 while they were still dating. Her doctor gave her a 10% chance of living another two years.
So, with that news, Ron proposed and three months later, they got married and began their life together, a life that expanded to include two sons, Luke born in 1982, and Cole, in 1984.
“When I got the diagnosis, I think I had some kind of sacred denial,” Ron says. “I told Mariah that she was going to be fine. We were going to fight this diagnosis and that we needed to go forward and live our life. I knew we needed hope. That there was a solution, and that we would find it.”
That's not to say that Ron's hope kept anger at their situation at bay. He quickly points out that the disease has made their life as a couple and as individuals very difficult. “Would I rather not be in this situation? Yes!” Ron says. “It is a terrible disease.”
Over time, Mariah would tell Ron that the disease has made her a better person. At first, this was difficult for him to hear. “I agree with her now. I'm probably a better person, too,” Ron says. “ I make sure my life is what I want it to be. I don't tolerate small things or small people. Everything has to go toward life and living. If it's not authentic and honest, it's not worth my time.”
Like second nature, Ron lists the lessons learned as a result of caregiving: He's more patient, he cares more, he's more sensitive to people with disabilities. He's very grateful for his life and his wife. And, most importantly, he has learned to ask for help. “I thought I could do it all,” he says. “I can take care of my wife, I'll do it all. Mariah has taught me to reach out. By reaching out, by getting help, we're having great experience making contact with others.”
At a movie theater a year ago, they emerged from the show to find a parking lot covered by several inches of snow. As Ron looked back-and-forth from Mariah and her wheelchair to the car, obviously silently questioning how to get from here to there, a stranger approached with an offer to help. “I said, Sure,” Ron says. “We had such a great time getting Mariah to the car. It's a memory. It's wonderful to see people be of service and to get involved.”
Ron now has help with Mariah's personal care, but the help has days off. When it's Ron’s turn to manage the care, he likes to break their morning caregiving routine into sections—for dressing, for care at the sink, for hair and makeup, and then cooking and eating. “Breaking it down into sections helps me get by,” Ron says.
For Ron, the hardest part is sometimes feeling that he gives himself up for another person's needs. “I want to be there, but the constancy, the 24/7, can be overbearing,” he says. “Caregiving is a lot of work. I will never make light of it. I’m lucky. The progression of her disability has been over 28 years. Because of that, I’m often not aware of some of the caregiving things I’m doing. They’re second nature now.”
As with all challenges, there's a flip side. The disease and the resulting caregiving role have increased their bond as a couple and as a family. “Mariah says she's better in our relationship because she can't run away when we get into an disagreement. Because the other person is not leaving, either physically or emotionally, we can really share, and say what you need to say,” Ron explains. “We have deeper discussions because of that.”
They also know the meaning of true intimacy. “I wash her face. That helps us with our relationship. Couples should try it sometime. There's a closeness, a privacy, a connectedness.”
Oh, and one last perk: “I get to put my wife's bra on her,” he adds.
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