A Resilient Life: Battling Pain & Dementia with Hope and Hard Work

The intersection of chronic pain and dementia is a deeply challenging reality that far too many of us face. It is a dual burden, with each condition actively complicating the other. A long-term study published in 2017 in JAMA Internal Medicine tracked older adults over a decade and found that those living with chronic pain experienced a 9.2% faster memory decline and a 7.7% faster increase in dementia probability than their pain-free peers.

Why does this happen? Chronic pain constantly floods the brain with stress signals, leading to prolonged inflammation in the nervous system. This can cause important areas of the brain – especially the hippocampus, which controls your memory – to physically shrink faster than normal. As dementia progresses, the ability to self-report pain plummets. In early-stage dementia, about 80% of people can accurately use a standard 1-to-10 pain scale. In later stages, it’s just 3% of patients. Because people with advanced dementia cannot say “my hip hurts,” their pain can manifest as behavioral and psychiatric symptoms that look like dementia: sudden aggression, agitation, pacing or withdrawal. How awful for someone who’s suffering so intensely!

My Story

I live with Ehlers Danlos Syndrome (EDS) and Complex Regional Pain Syndrome (CRPS) Type II. I am fortunate that with good care, my CRPS has gone into remission. I no longer experience constant severe pain, but I still live with chronic pain. It’s my reality. Years ago, I had a firsthand look at the intersection of pain and dementia when I worked part time for a renowned pain doctor, helping with new patient intake and office visits. He was deeply concerned about the patients who were missing appointments or forgetting to take their medications because their memories were failing. That’s when I learned that dementia was common for pain patients. Interacting with these people, fellow patients, had a profound impact on me. I knew I had to do what I could to prevent my own cognitive decline.

What’s particularly upsetting about dementia is the exploitation experienced by countless people with this progressive disease. In my own family, I saw how insidious this can be.

Gran’s Story

My grandmother was the matriarch of my family and the strongest woman I’ve ever known. Her decline started with small lapses, the kind easily dismissed as normal aging, but gradually grew into profound vulnerability. I found myself dropping by more regularly, moving from simple check-ins to helping her to manage bill payments and household duties.

After my grandfather died, Gran became very generous with friends and family, not understanding how important it was to save her nest egg for her future healthcare. People who were barely in her life before were suddenly visiting Gran often. She paid for a fancy trip that a friend and her husband convinced Gran to accompany them on, paid off various debts for people and more than half her savings was depleted in a very short time. I’d tried my best to get the family to take action, but too many of them were benefitting from her generosity to act.

Then, my mother decided to make her move. On October 30, 2014, she put a trust in place, naming herself as the person responsible for all my grandmother’s decisions, financial and medical. Just six days later, on November 5, 2014, Gran was officially diagnosed with dementia. My mother knew the diagnosis was long overdue, so she leapt into action before my grandmother’s impending neurology appointment.

While my mother assumed total control, she was utterly unequipped for the task. She was dealing with her own medical crisis. Having developed brain inflammation from encephalitis alongside a lifetime of severe anxiety and what appeared to be borderline personality disorder, my mother had volatile mood swings and a strict “my way or the highway” mentality.  She also had undiagnosed EDS and refused to get total knee replacement, instead experiencing major mobility issues. Her reasoning? Armageddon was coming soon and she thought it unnecessary. It was obvious to the entire family that she could not handle the immense weight of estate management, yet she refused to be challenged. Her lawyer made sure of that.

Despite the havoc it would wreak on my life, I then officially became my grandmother’s live-in caregiver. I did this out of a fierce protective love for Gran, knowing it would ultimately get ugly with my mother. The emotional toll was devastating. Watching Gran deteriorate was almost too much to bear. The relentless stress of the family dynamic paired with the physical demands of caregiving triggered brutal flares of my chronic pain. I was barely sleeping much of the time, dedicating myself fully to what was best for my beloved grandmother.

Worse still was watching my mother treat this amazing woman like a child, while turning her volatility on me. Because I was standing up for my grandmother’s wishes, I became the target of my mother’s hostility. It culminated in an agonizing irony: my mother called Adult Protective Services (APS) in an attempt to target me, despite my being one who was protecting Gran’s interests. My family came together to fight this unwarranted attack. At the meeting with social services, my mother backed down immediately, admitting I had done nothing wrong. It didn’t matter; the meeting continued much to her chagrin. APS ended up asking my mother to provide documentation regarding the management of my grandmother’s finances as she was deliberately keeping everyone in the dark. She sadly never did, and they never forced the issue. I have no way of knowing if she took advantage of Gran at that time, but I do know she had asked my grandmother to pay off her credit cards at least twice before the trust was in place.

The APS meeting would be the end of my relationship with my mother as well as my being my grandmother’s live-in caregiver. As soon as she possibly could, my mother placed our matriarch into a facility. She blamed me for the outcome with APS and took it out on both Gran and me. Appearances were very important to my mother, and what happened with APS didn’t look at all good for her. My family tried desperately to convince my mother that it was the wrong choice to put Gran in a home. She didn’t listen and was never legally challenged for her actions. I didn’t have the resources to fight my mother, so I had to make peace with this. It was a heartbreaking nightmare for me, but thankfully I could still see Gran on a regular basis. I held onto that because it was all I had left.

My Mother’s Story

My mother passed away two years before my grandmother did, ironically, having neglected her health and losing her grounding after my stepfather died. During my mother’s health decline, her estate became heavily entangled with her church. She left half to them and half to my brother, while writing me out entirely for the crime of standing up for my grandmother. I thought about fighting the will, because my mother hadn’t been in her right mind for over a decade due to the encephalitis and eventual memory impairment, but I didn’t have the strength to do it. Not financially, not physically, not emotionally.

Her passing was tragic. My mother had unexpectedly landed in ICU with sepsis. She was hooked up to machines, unresponsive. When members of her church designated to carry out her wishes decided it was time to pull the plug, they did so cavalierly. They left her alone there to die. My brother was notified of their decision but couldn’t be present because he lived hours away. He called me in a panic. Even after all the family strife, I rushed to be by my mother’s side when she took her last breath. It was incredibly hard, but I was there for her then just like I always was.

Aftermath

What happened to both my grandmother and my mother is a travesty. I know now more than ever that I need to protect myself. I’m over 50, so shielding myself against neuroinflammation and early cognitive decline have become major priorities. I have lived with chronic pain since the late 1990s, so I know it’s just as crucial for me to fight for my health now as I did years ago when my pain became unmanageable.

Today, my CRPS is in remission, and my chronic pain is beautifully managed through rigorous emotional and physical healthcare. I am now actively building what neurologists call cognitive reserve, creating a dense resilient network of brain connections that act as an insurance policy against decline. My focus is on something called brain-derived neurotrophic factor (BDNF). BDNF is a vital protein that triggers the growth of new brain cells, shields existing ones from stress and helps the brain rewire itself when we learn or form new memories. High levels of BDNF keep the mind resilient, while low levels are closely linked to memory issues and depression. There are many ways to pursue a sharper more resilient mind. My current preventive routine:

• 10,000+ Daily Steps: Walking this distance reduces the lifetime risk of dementia by 50% to 62% by flooding the brain with BDNF. It’s good for the body, mind and soul to get some sort of exercise regularly.
• Language/Musical Defenses: I’ve been studying Italian since August 2025 with plans to transition to Spanish in time, which builds structural detours in the brain. Statistically, bilingual individuals delay the onset of dementia symptoms by 4 to 5 years compared to monolinguals. Learning a new instrument forces the left and right hemispheres to rapidly communicate. I got a ukulele for my birthday and I plan to pick it up soon. All of these are pathways to increasing vital BDNF.
• Building Community: Pain increases isolation for far too many. I make it a point to connect with a friend/family member in person at least once a week whenever possible & reach out via phone/text even more regularly when we can’t be together in person. Being social is said to decrease cognitive risk by 26%. Chronic loneliness and social isolation act as major stressors that actually suppress BDNF production, so it’s important to reach out to others as much as possible, by any means possible, to keep yourself well.
• Cultivating Serenity: Things like deep breathing, meditation and walking in nature are fantastic scientifically proven ways to boost BDNF.  They target cognitive decline from a slightly different angle, by lowering stress, which removes the biological brakes on your brain’s growth. They also make me feel much better physically/emotionally, especially on tough days.

I’ve got other goals as well, such as mastering my sleep, managing my diet (reducing sugar intake is a big one!) and challenging my brain whenever possible with puzzles and games. In the fight against dementia, I am standing up for myself the same way I would stand up for anyone I love. I wonder, what will you do to increase your brain’s neuroplasticity, its ability to rewire itself? I challenge everyone reading this to naturally increase your protective factors, to help grow neural connections and shield your brain from stress.