The idea is that even after we know we're dying, we can make decisions that shape the quality of our remaining time.
High Peaks Hospice and Palliative Care serves patients across a huge swath of the North Country, from Warren County all the way to St. Lawrence County.
Brian Mann has been working with the organization to profile one family that has entered the program, the Gallaghers in Saranac Lake.
In the weeks ahead, Brian's series will follow the Gallagher family, telling the story of their lives and their work with hospice.
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The first time I meet Bill and Tomi, it’s a little awkward. We live in the same village, but in the way of small towns somehow our paths have never crossed.
So I go with Ryan Mellon, one of the social workers with High Peaks Hospice who’s working on the Gallagher’s team.
“How are you?” Tomi says, greeting us at the door. “It’s good to see you.”
The Gallaghers live in a beautiful, rambling house in an old neighborhood in Saranac Lake.
On this morning, Bill is in a big chair in a sunny room, with an oxygen tank sitting nearby.
Bill is a Princeton graduate, a former soldier, a former history teacher, who once served as town supervisor in Harrietstown.
Tomi — her full name is Thomasina – was a professional musician for years, a piano player and singer, who was also Winter Carnival queen a few years ago.
In the way of small towns we talk a while about the people we know in common, our kids, local politics. Then I explain the reason I’ve come.
“I’ve been talking to the folks at hospice for a long time,” I say, “I want to tell the story of the work they do, while getting to know a family that’s working with them.”
I ask if they're comfortable talking about their own experience and Bill says, “Fine, I have no reservations.”
“Do I come in on this?” Tomi says, with a laugh.
When I assure her that she’s an essential part of the story she grins and says, “Lovely, because I’m nosy!”
Now, these are three people – Bill, Tomi and Ryan — who I want you to get to know.
They’re fascinating and complicated and in the weeks to come, they’ll have a chance to talk about their lives.
But first I have to point out that while we talk, Bill’s big, eager laugh, often dissolves into a heavy cough.
Bill is eight-seven years old and he’s been using oxygen for a long time, mostly at night and when he played golf. But last winter his health got worse.
“He came down sick in November and it was a very sudden drop,” Tomi says. “And he can’t really get it together since November.”
For the first time, Bill’s doctor told him that his lungs are weakening, deteriorating steadily. And there isn’t anything more to be done about it.
“He looked at my CT Scan and it was very bad,” Bill says. “I said, ‘Where do I go from here?’ And then he read the scenario, a gradual reduction [in lung capacity] and hospice or the hospital.”
"When he said that did he give tell you how long that process might take?” I ask.
“He said some patients last eighteen months. Not getting better, but somewhere around eighteen months maybe.”
After consulting with their doctor and one of their daughters, the Gallagher’s did something fairly unusual.
Even though Bill still has some time, they decided to call Ryan and the people at Hospice.
“I can’t say we weren’t aware of hospice,” Tomi says. “Yes, I was. I had two dear friends who I worked as a volunteer during their last days. But I didn’t realize that you could come aboard fairly soon."
Tomi says her husband's diagnosis was devastating and the two of them felt that they needed more support and guidance.
"I think we didn’t realize that Bill wasn’t going to get better until the doctor said it very frankly," she says. "So you kind of have to face that. So we needed some help and direction in kind of trying to continue with life. I mean, hey. Let’s not pull the lid over yet, you know?”
Hospice put together a team, a nurse, a clergyman, volunteers, with Ryan coordinating.
Together they help Bill and Tomi with just about everything you can imagine, from managing Bill’s oxygen and medications to counseling and basic companionship.
“We have volunteers all around in all the communities pretty much there is a volunteer for hospice,” Ryan says.
“Say Tomi needed to go do something and she didn’t want to leave Bill alone, a volunteer could come and sit with Bill for peace of mind.”
That may not sound like a big deal. But this thing that has happened to Bill and Tomi, this monumental change in their lives, is isolating.
“I feel very limited,” Bill says. “My goal is to go out and play golf, if it kills me. But I feel as if I’m in a spaceship and people out there they can breathe.”
As you’ll hear in the weeks ahead, hospice isn’t designed to make all this go away, or hide how hard it is.
The simple truth is that Bill is dying. It’s a fact that can’t be changed or denied.
But Hospice can give the Gallaghers resources and ideas and friendship and support that allows them to maintain more control right through the process.
“To know that you can call them any time, so you're not walking this alone,” Tomi says. "I think this is the biggest thing that they have going. You’re not alone.”
By the end of my first visit, sitting with Ryan in Bill and Tomi’s living room doesn’t feel so awkward anymore.
The three of them are funny and gracious and they’ve assured me that they’re comfortable talking about all this, even the hard and private stuff.
So that’s where the path of this series will go. We’ll follow the Gallaghers and their Hospice team as long as we can, and we’ll talk about their experience as honestly as we can.