My Story
Like many of you visiting this page, I know first-hand how dementia can affect a loved one and what that can do to you personally.
In 2017, I started receiving calls from longstanding friends of my aunt. They raised concerns about her repeatedly asking for help with how to use her dryer or log into her computer, constantly misplacing things such as her keys, and growing piles of papers all over her home.
She had already mentioned to me she was having trouble remembering things, and she scheduled herself with a neurologist. Given my experience in neurology, I knew what was really happening. I also knew I had to act fast. I encouraged her to consider making me Power of Attorney (POA), and she agreed.
She was diagnosed with early onset Alzheimer’s Disease shortly thereafter. I knew even then to be grateful that she scheduled herself with neurology, and trusted me to act as her POA.
Sure enough, this is where the smooth sailing came to an abrupt halt.
In addition, my aunt lives in Connecticut.
I live in Illinois.
And then the pandemic hit…
While I knew what to expect from a clinical standpoint, after nearly six years of caregiving for her, I am still continually shocked at the lack of understanding around what dementia caregivers face. I am disappointed at the lack of support from societal institutions. And I am saddened by the misinformation on the internet and in online groups.
I spent up to 8 hours per day on caregiving responsibilities. And everything was a battle.
Why did the Social Security Administration have their own process for verifying me as a had Power of Attorney?
Why didn’t her cable company have a protocol to pick up cable boxes for long distance caregiver scenarios?
How is it possible her long term care insurance doesn’t have an online portal, and why is their mail STILL not coming to my address?
Why was her bank unfamiliar with the “gifting” clauses in a POA document?
And how dare her eye doctor tell me my aunt “seems fine.”
Could this possibly be the first time any of these institutions we posed with the scenario of a long-distance caregiver for dementia?
Plain and simple - our society is not ready for dementia. As a long-distance care giver for dementia, and as a neurology Nurse Practitioner, I have ways to help you through that.
On a more heartfelt note, my aunt is the one who encouraged me to volunteer in a hospital when I expressed interest in switching my career to the medical field. I have to believe that this all has happened for a reason. I’m answering a higher call to provide first, dementia education and, second, create a supportive community. She believed in me, and I believe in you.
My goals are:
Strengthen your understanding of dementia through expert education, including taboo topics, and storytelling from other caregivers;
Build your confidence to navigate the disease process, and face the emotional distress it triggers;
Empower you to advocate for your loved one and yourself at the policymaking level.
My mission is to help you avoid going through what I did, and efficiently transform your caregiver journey from one of problem-ridden day-to-day tasks to one of problem-solving.
My vision to create a community armed with education, hope and confidence to face the caregiver journey, and demand changes in society to accommodate the needs of caregivers and an aging population.
Why am I doing this?
Society may not be ready for dementia, but you will be.
Gratitude
Thank you to my aunt. I credit her with encouraging me to set that first foot in a hospital as a volunteer. Most importantly, I credit her for helping to raise me.
Thank you to her decades-long friends who have stepped up to be the boots on the ground for every role ranging from routine lunch dates and walks, to selling my aunt’s car and doing her taxes. They act as an extension of her commitments to kindness, love, patience, friendship, and I wouldn’t have been able to keep her safe without them. You are truly “salt of the earth,” as she would say.
Thank you to my husband for his support, reality checks and reminders to take care of myself. It’s not easy to watch a caregiver give themselves away.
Thank you to my brother for adulting with me when I recognized I needed more help.
Thank you to everyone who cheered me on to create Minding After and who believed in me from the beginning.
I graduated from Georgetown University with a Registered Nurse degree, and from The Catholic University of America with an Adult-Gerontology Nurse Practitioner degree. I have held clinical and lab instructor positions at The George Washington University and at The Catholic University of America. Also, I frequently lecture on neurological topics at academic institutions and professional organizations.
When I’m not practicing neurology, I love the outdoors, books, film, and exercise. I live in Chicago with my husband and our cat.