“I lost my dad in increments every day” – a son becomes a caregiver
Boys look up to their dads. They are role models. They are mentors.
But all of that changes when dad is diagnosed with a chronic illness. And when that son is still in middle school, the script for a typical childhood gets turned upside down.
For Nick Masny of Thornton, November’s designation as Family Caregivers Month (and Alzheimer’s Disease Awareness Month) comes with a very personal meaning. For the five years before his dad, Mike, passed away in May at age 71, Nick was the primary caregiver for his divorced father who had been living with Parkinson’s disease and related dementia.
“When I was younger, my dad was very much the stereotypical parental figure,” said Nick. “I thought of him as determined and capable, and I watched him build and manage a successful life. It seemed like nothing could really stop him if he put his mind to it, and I knew he would be there for me when I really needed a parent to lean on.”
Nick and his dad spent plenty of quality time together, often hiking in Rocky Mountain National Park. But the first symptoms of Parkinson’s that emerged when Nick was in middle school – stiffness in one hand and arm – never subsided. Within a year or so after the symptoms surfaced, the diagnosis became official, but Mike continued to live independently for 15 years while Nick finished his education.
“A few years ago he was still living on his own and, in retrospect, I know that his symptoms were worsening but I didn’t realize it at the time,” Nick recalls. “It came to a head when he started to experience some really terrible hallucinations and delusions.”
At that point, Nick assumed total caregiving responsibilities for his dad to ensure his safety. With his partner, Nick helped move his dad into an assisted living community and became his financial and legal representative while managing his medications and medical care from that point forward.
“In the last few years of his life, our relationship almost completely reversed,” said Nick. “I became the one who was taking care of him, keeping him out of danger, managing his affairs and just generally being the ‘parent’ in the relationship.”
In many ways, that may have been the toughest part of the journey Nick took with his dad. Beyond the responsibilities that Nick assumed to care for his dad, he lost the parental figure he assumed would always be there.
“It was really hard for me,” said Nick. “When other things went wrong in my life, and I would have liked to go to my dad for support, he couldn't always be there for me in the same way.”
Watching a loved one change
As Nick learned, not only did Parkinson’s diminish his dad’s physical health, but it affected his cognition as well. The problem is that the physical changes are easier to spot. But the dementia that may come with Parkinson’s disease, much like the dementia that comes with Alzheimer’s, Lewy Body disease and other similar diseases, can be tougher to see in real time.
“Something that I wish I had understood earlier is that my dad was really changing as a person over the course of his disease,” said Nick. “I didn't recognize that, and it made some parts of caregiving so much harder and more painful for both of us. It wasn't fair and it wasn't productive for me to expect him to be the same person that he always was. It felt like I lost my dad in little increments, every day, many years before his body actually died – and it took me a long time to frame that in a way that made sense to me.”
And Nick’s dad felt that sadness too.
“I know it was really hard for him too,” Nick said. “In his more lucid times, he felt overwhelmingly guilty to see the impact that his disease had on my life. He told me, ‘I didn't want things to be this way. I wanted you to be able to live your life. I didn't want to be a burden on you.’"
Care for the caregiver
The typical unpaid family caregiver provides over 30 hours a week of unpaid care for their loved one living with dementia. The caregiving process, which can last from several years to as long as 20, takes a physical, emotional and psychological toll on caregivers.
According to the Alzheimer’s Association, dementia caregivers are
41% more likely to become increasingly frail during their time as caregivers. And, tragically,
32% of dementia caregivers with a mean age of 64 think about or make plans for suicide versus
2.7% of U.S. adults age 56 and over.
For those caregivers, the Alzheimer’s Association offers a broad spectrum of educational programs and services, as well as a free 24/7 Helpline (800-272-3900) to help caregivers at any point in the process. The Association also organizes support groups, which often deliver the most meaningful assistance for individuals providing care for loved ones.
“I think it's important for caregivers to be very intentional about setting up support for themselves,” Nick said. “I wasn't very good at that, and I'm really happy if I can help other people avoid the same mistakes that I made. I've become a big proponent of support groups; the Alzheimer’s Association of Colorado group that I joined was an absolute game-changer for me. I especially love that this group focuses on Parkinson’s disease dementia and dementia with Lewy bodies, because the advice was so directly relevant to my own experience and folks understood just what I was going through.”
Sometimes the focus needs to be on self-care, which can be simple, such as taking a walk every day at lunch, or turning off your phone one evening a week, Nick believes.
“Just make sure that you carve out some time and some energy to take care of yourself while you're taking care of the person you love,” he said.
And part of that self-care is remembering to enjoy moments with your loved one.
“So, for caregivers of anyone with dementia, I would tell them to make sure to step back sometimes and just do something warm with the person they love,” said Nick. “Look through photos and tell family stories. Maybe watch a favorite movie together or take a drive to somewhere that makes you both smile. And just enjoy that time. Try not to get hung up on the little stuff.”
Nick and his dad took several day trips in the last couple of years of Mike’s life.
“I really cherish that time we spent together, even though it’s bittersweet to look back on it,” he said. “Everything I did to care for my dad – all the doctor’s appointments and researching medications and my phone ringing in the middle of the night – I did all of that because I loved him. But time together is what really counts and if I could do it again, I would really try to remember that.”
Manage the “business” of dementia early
Beyond self-care, Nick’s counsel for other families facing a dementia diagnosis is to address the essential details early so that you can prioritize spending quality time with your loved one.
“Get powers of attorney in place, write a will, maybe set up a living trust if that's helpful for you and your family,” he said. “Go and check out assisted living communities, memory care communities, hospices, and see what you might like if you need it down the road. Getting those things out of the way can really create peace of mind for you and your loved ones, and it will free you up to focus on things you care about, instead of having to worry about the mundane things later on.”
To learn more about the programs and services provided at no charge by the Alzheimer's Association, go to
alz.org or call the Association’s free 24/7 Helpline at 800-272-3900.
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.