Brought to you by Picnic Health.
Caregiving for a loved one with Alzheimer’s is a difficult journey that millions of individuals in the United States are forced to tackle. Part of that caregiver journey usually includes managing your loved one’s medical care, including their medical history, prescriptions, and more. Having access to your loved one’s medical records is critical in being able to advocate for your loved one and manage their care.
PicnicHealth is here to help those with loved one’s diagnosed with Alzheimer’s by giving caregivers access to their loved one’s medical records all in one, easy-to use online tool. PicnicHealth believes that better care happens when you have control over your records. Caregivers shouldn’t have to spend hours waiting in line or on hold just to get a copy of what should already be theirs. Tens of thousands of people use PicnicHealth to track and manage their health history—and to share it with caregivers, loved ones, and researchers.
Jennifer Fink, caregiver for her mother with Alzheimer’s, shares about her struggles with accessing her medical records and how having had them would have made a difference in her mother’s care:
One of the biggest challenges I faced while caring for my mom was dealing with the medical profession. Because my Dad was in charge of their health care until he died, I had a lot to catch up on when it came to mom’s care. I didn’t even know when my mom was officially diagnosed with Alzheimer’s! I thought she had dementia until her general physician shared her records with me (upon my request). Not only did I have a lot to catch up on caring for my mom, but I also had a lot to learn about her disease.
Catching up on her diagnosis and regular physical preventative care was a challenge, but it was more difficult because I hadn’t had access to her health records. I understand why my Dad didn’t feel the need to share the information; however, I desperately needed it after his death. Thankfully, mom’s cognitive issues weren’t surprising to me, but her missing medical records indeed were.
My mom had seen the same doctors for years, including the neurologist. I wish I had a photo of my face when this doctor asked me about mom’s last MRI. Why would I have that information? Why didn’t they? I still don’t have that answer more than five years later. Because of the missing records, we had to update everything, including getting a new MRI.
Some people might not understand why getting updated tests was an issue, so let me explain. mom wasn’t fond of going to the doctor. Who is? She wasn’t all that cooperative if she wasn’t in the mood to humor me on some silly request. Not that most of my requests were ridiculous, but she regularly treated them as if they were. Getting her into the car and to the doctor required a lot of patience. We’d be in the car for five minutes or so when she started demanding to know where we were going.
If I told her the truth, we’d argue about why she was going to the doctor. Knowing this was a likely scenario, I’d have to get creative. If I could get her to think we were doing something else, I’d still get her complaining about her husband being lazy and not driving her where she needed to go. (She didn’t remember he was dead or that I was her daughter. These statements frequently left me feeling sad.)
Once we’d arrived at the doctor’s, I’d have to work magic to get her to enter the building willingly. At this point in our outing, I was getting stressed and tired, but the fun was only beginning. mom never had an appointment where I didn’t have to remind all of the staff that she had advanced Alzheimer’s disease. I would quietly explain that she couldn’t answer their questions only to have them ask questions in a rapid-fire way.
Because I had to rely on their electronic medical record-keeping, I never had the confidence that they understood the patient they were treating. It was a regular occurrence to remind them how to collect urine (they thought I had magic powers to make that happen) and how to get the answers they needed from her. mom ended up with a new general physician who would ask her questions, and when I clarified, he’d look at me in frustration. This doctor was very good at making me feel like I was simply mom’s driver.
Medical visits were like this every time, whether a new office or the same people she’d seen for years. I even politely asked them to flag her chart with ADVANCED ALZHEIMER’S to help all of us avoid frustrating situations. Even today, I still don’t understand why that wasn’t an easy request to handle.
All I wanted was to take care of my mom. I didn’t want to manage her medical team (who weren’t interested in my working with them, to begin with). Most of the time, I felt like the captain of mom’s care team, but with her doctors, I was just an annoyance. Had I had all of her medical information in hand, I may have had more of a “fighting” chance with them. At the very least, I would have had the information they needed without getting it from others.
Another reason I needed my own set of her medical records was to have answers at my fingertips. mom lived in a memory care community that handled her medications. All they wanted from me was to pay the bill. It took a couple of medical visits where I didn’t know mom’s meds or their dosage to realize I had to get that information from the med tech where mom lived. I gave up asking why mom’s medical team didn’t have that information.
Until our health care system functions better, I am glad that PicnicHealth is available to take care of caregivers who find themselves in similar situations.
About the author: Jennifer Fink is the founder of Fading Memories Podcast and a Change Champion for PicnicHealth, a company dedicated to helping patients own their health. PicnicHealth’s innovative service and technology can help support you or your loved ones’ medical care by giving you access to your loved one’s medical records. Jennifer is the daughter, granddaughter, and great-granddaughter of women who have suffered from Alzheimer’s or other cognitive impairments. Jennifer is the host of the Fading Memories podcast – a supportive show for people caring for a loved one with memory loss.