Mary Delaney discusses the challenge of caring for her husband with Parkinson’s disease and three children
First, the plain facts, according to the Family Caregiver Alliance:
- 65.7 million informal and family caregivers provide care for someone who is ill, disabled, or aged in the U.S.
- By 2050, the number of individuals using paid long-term care services in any setting (e.g., at home, residential care such as assisted living, or skilled nursing facilities) will likely double from the 13 million using services in 2000, to 27 million people.
Mary Delaney of Hudson Valley, New York, is but one of these caregiver statistics. At 63 years old, she has been caring for her husband, Vin, since 2003. That was when life took a dark turn as Vin, just 53, was diagnosed with multiple system atrophy (MSA), a variation of Parkinson’s disease.
Q: No one expects to receive such a terrible diagnosis. How did your family cope at first?
A: Vin was always so active. He was a plumber, taught soccer, played Celtic drums, and painted every moment he could. He was a very accomplished artist and even won a Jackson Pollock grant. Initially, the doctors thought he had carpal tunnel syndrome. Our children were 11, 13, and 15, right in the middle of their teenage years. I had gone back to school to become an art teacher and was substitute teaching to make some extra money. In between specialist visits and hospitalizations, Vin was still working when he was able. We all went to family counseling and that helped. But even then we lived with anticipatory grief knowing the course his disease would take.
Q: When did things change significantly for your family?
A: Just three years after his diagnosis, Vin was no longer able to work. He was in and out of the hospital with bladder and kidney stones, issues with his medications, and tremendous anxiety. It was scary to see the way his disease progressed and how he was physically changing before our eyes. I ended up going back to work in child services in order to make up for the lost income and ensure that we had excellent health insurance. I drove three hours each day to Albany, New York, working from 4:00 p.m. to midnight, and later, midnight to 8:00 a.m. By working nights, I could count on the kids being home—doing homework, sleeping, and caring for their dad. We all worked as a team, but the kids obviously felt torn, wanting to be kids but deeply impacted by all that was changing.
Q: How is your husband today?
A: Vin is basically bedridden at this point. He lost his ability to speak in 2011, and though he has a tracheostomy, it’s difficult to communicate. Today he uses one finger to signal yes or no.
Most patients with MSA live a decade; Vin is in his 12th year.
Q: What’s the effect Vin’s illness has had on your children?
A: My kids willingly gave up their own time and energy to care for their dad and have obviously been through a real emotional roller coaster. My youngest daughter, Mairi, actually became an EMT during high school. The upside, I suppose, is that they have developed deep empathy and compassion for others. Our situation will not have a happy ending, and the long-term impact on my children is yet to be seen. Society can benefit from a more compassionate younger generation, especially given the massive number of baby boomers coming into their elder years.
I’m happy and proud that our children finished college, which was a primary goal for both Vinnie and me. Our oldest daughter, Caitlin, is returning to school for music therapy and hopes to someday work with the elderly. Our son, Deven, works for this very website, and Mairi is headed to an internship in Guatemala to study women’s health.
Q: What about long-term care?
A: We never expected to be in this position. Who does? And you can’t qualify for long-term care after this kind of a diagnosis. Honestly, Vin’s disease has been financially devastating. Everyone should make sure they have long-term care in place because you just never know what can happen in life.
Q: How are you holding up?
A: I retired from my job in December 2015 to care for Vin full-time, and it’s only now my feelings are catching up with me. I put my life on hold for so many years, shelving my own dreams of pursuing my art to do what was needed for my family. I was just on autopilot. The stress has taken its toll as is customary for caregivers, so now I need to take care of my own health. I’m trying to seize time for myself each day—gardening, walking, and making plans to return to my art. I just converted the back of our garage into an art studio for myself. I’m really happy about that.
Q: What advice can you offer other women in this situation?
A: Accept as much help as you can from family, friends, and paid support. It’s also important to give yourself a break as often as possible. I neglected my own physical and spiritual needs for many years and am now paying the price.
Q: Anything else you’d like to say?
A: All we have is today.
Some of Delaney’s art:
Original artwork by Mary Delaney
Nancy Sharp is an author, a keynote speaker, and a storyteller who frequently speaks publicly about loss, transformation, and bold living. The author of the award-winning memoir, Both Sides Now: A True Story of Love, Loss, and Bold Living, she lives in Denver with her second husband, her twins, and her two stepsons. You can find her on Twitter at @BoldLivingNow and Facebook at Nancy Sharp.
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