We’re Still Living
Kristi Voelkerding & Donna Leria
Kristi Voelkerding and Donna Leria will soon take in the awe-inspiring views from the edge of the Grand Canyon, a place Donna has long dreamed of visiting. If they can afford it, they also hope to vacation in Europe. Meanwhile, Donna spends her days puttering in the garden at home in Southbridge, picking strawberries and planting tomatoes. She’s crafting keepsake quilts for her grandchildren, and one for Kristi, too.
“It’s early retirement with a sort of big exclamation point at the end of it,” says Kristi of Donna’s activities since she was diagnosed with early-onset Alzheimer’s disease late last year.
“We’re still living,” Donna agrees.
Of course, it’s not always easy. Kristi knows there are painful days ahead. Donna, a nurse, sometimes struggles with her forced retirement. “For me, I’ve always lived for working, so when there’s no more working, there was the depression, and so it’s been difficult for both of us,” she explains. “We’re working on that.”
They hope her disease progresses slowly. But as health professionals who have worked with long-term care patients, Kristi, 49, and Donna, 60, are also being practical—taking care to make medical and end-of-life plans while Donna is still able to participate in the decision-making process and keeping Donna’s two adult sons, who are supportive, informed about Donna’s wishes. “I wanted her to feel comfortable with what we were deciding now because there may come a point when she really fights me on some of the decisions that we’ve made and I know I’ll just have to grit my teeth and get through it because that’s the way the disease goes,” says Kristi, an assistive technology specialist for Easter Seals Massachusetts. “I don’t want there to be any questions later on that she signed or said something that was not captured by our lawyer.”
Assuming more responsibility for Donna’s care has also brought Kristi face-to-face with the limitations placed on them by DOMA, which prevents the federal government from recognizing their marriage. As a result they are unable to file their federal taxes jointly, which comes at great expense to Kristi and Donna. Kristi prepares their taxes—what she calls the “yearly reminder of how much money we should be getting back on our taxes but we’re not.” Had they been able to file last year’s return as a married couple they would have received an additional $6,845 says Kristi.
Because Donna is no longer able to handle her own finances, Kristi has been designated the representative payee, or the person legally authorized to accept and manage Donna’s Social Security disability payments on her behalf. She notes the irony in the fact that though the federal government entrusts her to administer Donna’s money while she’s alive, because of DOMA, she’ll have no access to her Social Security benefits when Donna passes away. “I won’t have access to any spousal benefits,” says Kristi, “even though I’ll be the one who gets her through and keeps her out of a nursing home and spares the federal government and Medicare as much as I can.”
It’s an injustice Kristi describes as “an extra little stick in the heart.” But she and Donna understandably don’t dwell long on the negative and instead focus on their 22-year history together and the delight they still take in one another’s company. “You know you don’t like somebody when you come home and they’re gone and you’re glad to get that moment of being alone,” Kristi theorizes. “But it’s never been that way with us. And that’s when you know that you really like somebody - when you’re just glad that they’re there at the end of the day.”
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