By Pattie Cullum, 2025 Dole Caregiver Fellow, New Hampshire
Caregiving often begins with a diagnosis—an event that changes everything, alters our daily routine with our loved ones, and leads us to find new ways of supporting them. For me, it was my dad’s dementia diagnosis. As his daughter and caregiver, I’ve found that even though the path can be uncertain and filled with challenges, there are also moments of connection and clarity that help us make it through the hard days.
My dad, an Army veteran who just turned 88 in April, was always healthy and independent. He didn’t have any prior medical conditions, never had surgery, and didn’t take any medications. It wasn’t until 2021 that we started noticing signs that something wasn’t quite right. He was having difficulty walking straight, and after some testing, he was diagnosed with Parkinson’s disease. Despite the diagnosis, he continued to drive himself, run errands, go grocery shopping, and remained largely independent.
However, in 2022, things started to shift more noticeably. My dad began to experience double vision, and within about six months, we started to see his memory decline. While his long-term memory is still very strong, his short-term memory has deteriorated rapidly. It’s a strange feeling to watch someone who was once so independent start to slowly lose pieces of himself.
The true turning point came when my dad was officially diagnosed with dementia as a result of his Parkinson’s disease. It was almost like being hit on the side of the head or running into a brick wall. The freedom and flexibility our family had taken for granted was now gone, and a lot of plans had to be put on hold. The emotional weight of that diagnosis didn’t just affect my dad—it affected all of us. The change in our roles and routines was a difficult adjustment at first, but we’ve come a long way since the diagnosis.
Today, my dad has a routine that helps him feel secure. He wakes up and has the same breakfast at the same time every day, and while he has a home health aide to assist with his Activities of Daily Living (ADLs) such as assisting as needed with showering, getting dressed, going for walks, and doing exercises, he still does a lot of things for himself like making the bed, folding his clothes, and fixing his own lunch. Evenings can be difficult when he “sundowns” and gets more easily confused, but we’re still able to have dinner together and go on walks. He takes medication, which has made a drastic difference, and he has a personal certified geriatric trainer to help him with his balance and physical therapy.
Part of this caregiving journey has been discovering strategies that help my family and I stay grounded and connected, especially when things are harder. Here are a few of the things I’ve learned when caring for a loved one with dementia:
1. Write Things Down for Communicating and Visual Cues
We use a lot of sticky notes and keep a message board with helpful reminders for my dad. We also encourage him to write down questions he has if someone isn’t there to answer them right away, which doubles as a good mental exercise for him.
2. Simplify Mental Tasks at Night
We’ve learned that too much mental stimulation at night overwhelms him. Limiting activities like using the computer and focusing on simpler tasks has helped him stay calmer.
3. Use the APR Method
The APR method—Anticipation, Participation, and Recollection—has been useful in helping Dad stay engaged and practice memory recall. Writing down details or thoughts about activities and preparing for an event he has planned for the next day, actively experiencing the activity, and discussing the event’s details after the fact helps with memory recall and encourages cognitive activity in a meaningful way.
4. Take Breaks and Show Empathy
When Dad gets frustrated, reminding him that it’s okay to forget and showing empathy helps ease some of the tension. Also, taking short breaks, even if it’s just walking away and taking a deep breath, has been essential for recharging and preventing burnout.
5. Seek Support and Connect with Others
Caregiving can often feel isolating but learning about the Elizabeth Dole Foundation’s Hidden Heroes Caregiver Community and online care groups has been game changing. Sharing my experiences and hearing from others has helped me find not only valuable advice and resources, but also a sense of community and emotional support when it’s needed most.
Are you someone who takes an active role in a service member or veteran’s care? The Elizabeth Dole Foundation provides a wide range of resources including peer support groups, educational tools, and practical assistance like financial grants and budgeting help. Whether you’re new to caregiving or have been in the role for years, these services can make a meaningful difference and provide a trusted network of others who understand the unique challenges of caring for someone who served. For more information, please visit our website at elizabethdolefoundation.org.
