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.
Jennifer Fink, who is caring for her mother with Alzheimer’s, shares her struggles with accessing medical records and how having 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 healthcare 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 not having access to her health records made it more difficult. I understand why my Dad didn't feel the need to share the information; however, I desperately needed it after his death. Thankfully, my 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 my 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. Since I didn’t have all of her 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. My 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. My requests weren’t 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’d start 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 some magic to get her to enter the building willingly. At this point in our outing, I would be getting stressed and tired, but the fun was only beginning. My 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.
Since I had to rely on their electronic record-keeping, I never had the confidence that they understood the patient they were treating. Reminding them how to collect urine and how to get the answers they needed from her was a regular occurrence. My 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 my mom's driver.
Medical visits were like this every time, whether it was 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.
Another reason I needed my own set of her medical records was to have answers at my fingertips. My 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 my mom's meds or their dosage to realize I had to get that information from the med tech where she lived. I gave up asking why her medical team didn't have that information.
All I wanted was to take care of my mom. I didn't want to manage her medical team (who weren't interested in me working with them, to begin with). Most of the time, I felt like the captain of my 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.
Until our healthcare system functions better, I am glad that PicnicHealth is available to take care of caregivers who find themselves in similar situations.
PicnicHealth is here to help those whose loved ones have been diagnosed with Alzheimer's. It gives 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, as well as share it with caregivers, loved ones, and researchers.
Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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