Dennis Dulniak discusses his experience caring for his wife Nancy Dulniak, a retired librarian who was diagnosed with early-onset Alzheimer's in 2015. This journey led to the founding of Central Florida Dementia-Friendly Dining and the Nana’s Books Foundation.
Like any family affected by dementia, there were times of hardship for Dennis Dulniak and his late wife Nancy Dulniak, who passed away last year. But following Nancy’s 2015 diagnosis of early-onset Alzheimer’s, the couple forged new relationships and connections. Along the way, they began sharing their personal experience publicly, speaking to the media and spreading awareness of the disease.
Inspired to create safe and enjoyable dining experiences for people impacted by dementia, Dennis went on to establish an initiative called Central Florida Dementia-Friendly Dining.
In a LiveTalk with Being Patient, Dennis speaks about his experience as a caregiver for Nancy, and his advocacy work both during and after his caregiving journey. Now, through Nana’s Books Foundation — which aims to educate youth about Alzheimer’s, dementia and other disabilities through books — he honors Nancy’s legacy, her love of books and her lifelong career as a librarian.
Being Patient: Can you share with us some of the early symptoms of Nancy’s illness?
Dennis Dulniak: The difficulty came about when Nancy struggled in her job as a catalog librarian in terms of accuracy and all the details in the requirements of her position. Unfortunately, she would come home crying. This created such repeated stress that we decided we could afford for her to retire. She was aged 62.
We didn’t recognize that her difficulty was a form of dementia or disability until after she retired. Two months after retirement, Nancy was diagnosed with mild cognitive impairment, MCI. The neuropsychologist termed that a disability. Many of us in employment have long-term disability insurance, and had we recognized [her disability] earlier, she would have received long-term disability insurance versus just Social Security.
I advocate very strongly to people employed in jobs that if you are struggling in terms of cognitive issues, get yourself tested through your general physician.
Being Patient: Through participating in research, Nancy was then diagnosed with early-onset Alzheimer’s in 2015, about a year after her MCI diagnosis. How did an early diagnosis help?
Dennis Dulniak: We found that there were resources available that we could tap. Support groups in our area gave us a new network of friends, because our old network of friends suddenly disappeared, including family members who couldn’t relate to what was happening to Nancy. That was difficult. However, we found that it’s not the end of life with [a] diagnosis.
Early diagnosis gave us a lot of opportunity to get our legal matters in order, have very in-depth discussions with our boys through the Conversation Project on end-of-life decisions [in] terms of our preferred actions, wills, powers of attorney and durable health surrogate. All of that [was] very important that we were able to complete it early enough when Nancy could take an active role in making decisions and communicate her wishes. I was very proud of her [for] doing that.
Then, she even participated in media segments in the local area on TV and radio talk shows, talking about what this disease was like. Even today, I recall one person asking her, ‘What’s it feel like to have dementia [and] you forget something?’ She says, ‘What does it matter? So what I forget something. Big Deal. Move on.’
For me, it was being sure that each day we had together were good days. To this day, that’s been my forte: Have good days and bad moments. That [was] exactly what we wanted as we [moved] forward, including placing her in memory care where I [knew] she was well taken care of, safe, and did enjoy the experience in memory care, even though for me, it was the most difficult decision I’ve had to make.
“For me, it was being sure that each day
we had together were good days. To this day,
that’s been my forte: Have good days and bad moments.”
Being Patient: How did Nancy adapt to the memory care community?
Dennis Dulniak: Initially, she had a major problem with it. The first couple of days, she refused to take her medication that helped control some of her abilities, functions and mood swings. I had to come in and help her through that, and I was able to stabilize her and make her feel comfortable.
Then, the community itself really reached out and worked with her. The caregivers in that facility really did an excellent job. She developed some relationships with other residents and staff in that facility that really made the difference. People with dementia and memory issues need to find others like themselves with whom they feel comfortable with, and the friendships that she developed there were very strong.
When I would go in there, she would be mostly engaged in activities or with some of her neighboring companions. It was very sweet that she would be so involved. Pre-COVID, I would be able to take her out, and she never fought coming back to her community because she felt it was more like home for her.
On caregiving during COVID-19:
Being Patient: Can you talk us through the timeline of events during the pandemic, and how difficult those times were for the family?
Dennis Dulniak: That was tragic. The date’s still fresh in my mind. March 14 [of 2020], I was there that morning. I took pictures of her. That afternoon, the state of Florida closed the facility to outside engagement. From then on until September, I was basically locked out of being able to visit Nancy for 28 weeks.
The only connection we had was a window visit on our 47th anniversary and two outside drive-bys, which [were] so unnatural because they had never let the residents out the front door. I was not allowed outside my car during these drives-bys. It was just heartbreaking.
During COVID, we did have access to FaceTime, but in Nancy’s case, she had a severe disability to communicate by telephone. I could not call her on the phone and talk with her, although I tried. The efforts that were made on the iPad with FaceTime were unsuccessful, because she could not relate to a picture on a tablet or connect to me through that picture.
Being Patient: And Nancy was eventually infected with COVID.
Dennis Dulniak: The facility itself had a major outbreak of COVID where 40 of the 60 residents and 14 of the staff tested positive. That was in October of 2020. They closed the facility again and decided with the major outbreak to transfer some of the residents out. Nancy was transferred, because the only symptom she exhibited from COVID was extreme fatigue. I saw her walk out of [the] facility and onto the stretcher [as she was transferred] to a ‘skilled,’ quote-unquote, nursing facility. That was the last time she walked.
Being Patient: Why do you say ‘skilled,’ quote-unquote, nursing facility?
Dennis Dulniak: The problem with the facility was they created a COVID wing out of an end of a hallway that obviously I was locked out of. When she was there, the physical [therapists] did not understand that she had dementia and couldn’t relate to any [of their] communication. I feel this facility was understaffed, underprepared for dealing with COVID, and definitely unprepared in dealing with my wife’s Alzheimer’s.
She stayed there for 75 days where she developed severe bed sores. She declined significantly, because my access to her was limited to just a couple of 30-minute visits outside while she was in a Gerry bed. She was covered up, drugged and incapable of communicating. [It was a] very sad situation. I could not wait to get her moved out.
After I had her placed on hospice, the hospice staff assisted me in getting her transferred to a facility that I thought was better prepared in dealing with her. [After the transfer], she lived for another nine days.
Throughout the COVID experience, I participated in numerous advocate activities related to opening up the facility in Florida. Fortunately, we had an advocate who helped in having our Governor create a task force that gave us access as the “essential caregiver.” Recently, we created a book Saving Them To Death that I wrote a section on. I credit the writer of this book Mary Daniel for being able to put this together, sharing many stories of people who experienced isolation in [Florida’s care facilities].
[There] is a bill before the Florida House and Senate giving access to up to two family members or designated officials, regardless of the pandemic. The isolation created from COVID led to the severe decline of Nancy. Although Nancy did not die from COVID, the isolation shortened her life significantly. Advocacy is very important.
On dementia-friendly dining:
Being Patient: Tell us about the inspiration behind Central Florida Dementia-friendly Dining.
Dennis Dulniak: I credit my son Craig, who shared an article from The Washington Post about a dementia-friendly dining experience in West Virginia. It just so happened that Nancy and I would visit a family-owned restaurant in Orlando called The Meatball Stoppe. In talking to the owners there, they understood Nancy had dementia. They themselves [have been impacted by dementia]. When I talked about [Central Florida Dementia-Friendly Dining], they perked up immediately and said, ‘We want to be first,’ and they became our first restaurant in Central Florida.
They started in January of 2020. Unfortunately, three months later, they had to close down serving patrons indoors because of COVID, and we have not been able to restart Dementia-Friendly Dining since that experience. But last Friday, I got a call from one of the restaurants that I’ve been recruiting and they said, ‘We’re interested in getting back into Dementia-Friendly Dining. Are you willing to come train our staff and help promote this?’
I’m excited because this is the opportunity we’ve been waiting for. The rate of COVID is down in terms of the positive numbers and the incidence, so we’re looking to restart Dementia-Friendly Dining in Central Florida. That’s where families could take their loved ones to restaurants, where the staff are trained on dealing with their disability of dementia, and I’m excited about being able to reach out and explore other restaurants who would be willing to do this.
Being Patient: More broadly, can you share with us strategies for navigating dining out alongside loved ones living with dementia?
Dennis Dulniak: Some of the strategies [involve] keeping it as simple as you can for the loved one: not tossing a menu in front of them and having them choose from this large number of choices, but knowing what that person likes and [making] suggestions. Those suggestions are simply A or B and let them choose if they can. If they can’t choose, say ‘I really think you would like this menu choice.’ [Have] those ideas in mind before they go [to the restaurant].
If need be, [talk] to management and [make] sure that [a loved one] can go to a safe place where there wouldn’t be a lot of activity. Noise and activity do affect people who have dementia. Alzheimer’s and dementia should not restrict that person from still living like a regular human being.
On educating youth about dementia and other disabilities:
Being Patient: What was the inspiration behind Nana’s Books Foundation?
Dennis Dulniak: For Christmas, rather than providing Christmas presents for us, one of my sons would buy books and send [them] to [a friend] who was a teacher in a Title I school, and would do that in Nancy’s name.
Kids would write to Nancy, thanking her for the donation and really appreciating it. She lit up. When she was near death, my sons and I decided to create a foundation called the Nana’s Books Foundation. We’re a nonprofit foundation awaiting 501(c)(3) from the IRS.
Last summer, we donated 31 books to her hometown library. These books are specific books that we’ve critiqued and evaluated, and they’re books on Alzheimer’s, dementia and other disabilities. This semester, we’ve actually chosen books, which are grade-appropriate books, and have already ordered over 700 books that will be sent to her hometown school district.
We’re targeting Title I schools. We’re identifying students in those classrooms who will receive at least one book from us on either Alzheimer’s, dementia or a disability. The kind of resources on Alzheimer’s and dementia available for kids are very limited. I myself am looking at creating an activity book to help with that as well.
“It’s important that we educate not only our adults,
but our children as well. They are our future
caregivers, and we are going to be dependent
on them for their love and compassion.”
We’re willing to accept volunteers to help with Nana’s Books Foundation. Not only are we looking for volunteers, but our foundation will be recruiting some board members as well. If there are people who have an interest in helping out, we would be more than willing to hear from them, because we do have books that need to get reviewed and determined whether or not they would be appropriate for students. When it comes to public libraries, we’re also making sure there are resources that relate to Alzheimer’s and dementia for adults.
The myth that goes along with dementia is that it should not be talked about. Well, that’s no longer true. We now have over six million people in our country that are facing the Alzheimer’s diagnosis. We have over 11 million care partners [for people with dementia]. Certainly, the numbers are only going to increase as our population ages. It’s important that we educate not only our adults, but our children as well. They are our future caregivers, and we are going to be dependent on them for their love and compassion.
The interview has been edited for length and clarity.
Contact Nicholas Chan at firstname.lastname@example.org