Living, Loving & Parenting With My Terminally Ill Husband
As her husband, Don, enters hospice stage with advanced Parkinson's Disease, Maura Horton reminds their two young children the importance of embracing life.
Compassion is practically imprinted on my children's DNA. On any given day, Libby, 13, and Hadley, 8, will hold doors open for the elderly or talk to me about a friend's under-the-weather sibling—they're hyper-aware of other people's limitations. It's a beautiful quality they came by honestly. You see, all their lives, they've watched their father—my husband—struggle with Parkinson's Disease.
To say that Don's diagnosis in 2004 was a surprise would be an understatement. At 48, he was a successful football coach at the pinnacle of his career—no stranger to 16-hour workdays or daily workouts. Sure, he seemed a little slower than normal and he had trouble extending his left arm, but I figured he was either exhausted from the season or from helping me care for Libby, who was almost two years old at the time. Don assumed he had pinched a nerve or angered an old football injury. Thankfully, the team doctors also sensed something was amiss, and after an exam, they suggested he see a neurologist.
The diagnosis was humbling and swift. The neurologist conducted a couple of finger dexterity tests and watched Don's gait as he strode down the hall. Fifteen minutes later, he delivered the news that would change our lives forever: Parkinson's Disease. We looked at each other and said, What does that mean? The doctor encouraged us to read up on it and come back with any questions. He also said, of all the diseases out there, Parkinson's is one of the best to get, because the odds are that a cure will be found in our lifetime.
To be honest, in the months that followed, we didn't think a lot about the diagnosis. Don and I read up on the disease, of course, but he figured he'd just live with it, like he would a broken arm. In the meantime, we kept trying to have another baby, and after four rounds of IVF, we welcomed our daughter Hadley. Our family was now complete.
But as the years wore on, Parkinson's continued to ravage Don's body. Our children began to notice his limitations, like not being able to pick them up. (He was worried he'd drop them.) We purposely kept the conversation about the disease open and open-ended. We addressed issues as they happened. We explained that the condition may change the way he is but not who he is. He's still the affectionate father whose morning routine involved tucking sweet notes, such as "Libby—Be Quick But Don't Be In A Hurry. Love, Dad" into their lunch boxes. He's still the man who proudly whirled his little girl around at the father-daughter cotillion dance, despite any physical difficulties. In moments of frustration, we encouraged them to get mad at Parkinson's—not their father.
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Today we continue to struggle with the realities of living with someone whose abilities are being slowly and systematically stripped away. I think it's been the hardest on Hadley. When we need to move Don from one spot to another, she goes into what she calls "Turtle Time," where she closes her eyes or leaves the room so she doesn't have to watch. She doesn't know what her father was like before the diagnosis, and you can only tell her so much through stories. Libby has caught Don's falls, which are common among people with Parkinson's Disease. She knows to text or call hospice in the event of a fall and, if the EMTs are called, to show them Don's do-not-resuscitate order.
That's not to say we haven't been aggressive in fighting the disease. Four years ago, Don underwent a newer treatment called deep brain stimulation. The procedure involved drilling four holes into the brain and inserting four metal rods with leads that talk to a Pacemaker and help send messages to the brain to move. You basically become a bionic person. He had some limitations and challenges after the surgery, but it probably did buy him some time. Still, as Don pointed out, there is no remission with Parkinson's. He told me, "I can fight this every day but it's a fight I'm never going to win." We know we've given it our best shot.
Though a cure may be on the horizon, Don most likely won't be alive to benefit from it. In the last three months, his quality of life has shifted dramatically. He's no longer able to attend the girls' sporting events, something he adores. Instead, we film the games and watch them together at home. We've brought hospice into our home, where we'd like him to stay as long as possible, and falls often. We can't help but think that there will be this unbelievable moment of death during one of those falls. The kids are almost stuck in it. Every time he falls, they think, Is this going to be the one that does it? Are we now fatherless?
Their concern is understandable, but at the same, they're children. Though it's a struggle, Don and I want to teach them to live even though they're helping him die. We tell them it's okay not to be with him every waking moment. We remind them that they still have to live, to go and be a kid. I'm hyper-focused on pointing out new experiences and highlights in their lives, like a school dance or someone's birthday party, so they can get excited and think about something besides worrying their father. Their worry is always going to be there, but they need moments of relief as well.
Our network of friends is also a source of comfort. Don coached at a number of universities and helped 18 of his players reach the NFL. Once we got hospice involved, a friend of ours asked friends and former players to share some of their favorite Don stories with the girls. I want our daughters to remember him the way we saw him, not what this disease did to him. We've gotten some amazing letters so far, and I think it's helping him have some peace that he did all right.
A few players took it much further and recently started a GoFundMe account in his name to help preserve a future for him. On the account page, they have shared how much Don has changed their lives, how he saw them as people first and players second. He's made such a difference in so many young men's lives and sacrificed a lot for our family. It's beyond gratifying to see it come full circle, and we've been so moved by the outpouring of love and support.
I'm learning that I can't limit my kids' dreams just because Don is dying. When he was diagnosed, our hopes, dreams, and expectations for them changed. The sky had been the limit. We went from thinking our daughters could go to any school, be whoever they wanted to saying they'd probably be in a state school and we would have to limit what we do because so much of our money would go to pay medical expenses. But now I'm back to believing that we'll figure out a way to make whatever they want to do happen. Education is so important in our family, and I want to try to make Don proud by keeping their schooling a key focus.
I've also found a way to help other people who, like Don, struggle with dexterity. A few years ago, inspired by his difficulty dressing himself, I designed and created MagnaReady® shirts, which use small, easier-to-close magnets instead of buttons. I was a one-woman shop until recently, when I partnered with the world's largest shirt wear company, Phillip Van Heusen. This fall, our shirts will be available in major retailer stores this fall. Tommy Hilfiger also used my magnet technology to create a line of clothing for children with disabilities, under the nonprofit Runway of Dreams.
I may not be smart enough to help find a cure, or rich enough to fund a cure, but this can be my small way of giving back. I have to do something. Don has changed so many people's lives through his coaching, and hopefully I can do the same and the girls will see that. Our journey won't end with the diagnosis of this disease. That's not the end of our story. Hopefully they'll see that and want to step up to the plate themselves some day.