20 Years into a Chronic Care Journey, Record Keeping Is Now More Manageable

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Managing a loved one’s care is an experience that many of us share. Whether it’s an aging parent with a chronic illness or a child with health problems, caregiving requires time, patience, and organization. I’ve been managing my mother’s care for so long, “caregiver” has become a big part of my identity.  

Being Organized is Being in Control 

For the past two decades, my mother, Alma, has been living with Peripheral Neuropathy, a chronic pain condition that requires consistent and frequent medical care. Over the years, her medications have changed, the dosages have increased and decreased, but the condition persists. I’ve spent years trying to keep my mother’s medical records organized, but it hasn’t been easy.   

When she was first diagnosed, my mother would sometimes be sent from a doctor’s appointment directly to the hospital. We quickly learned that it’s important for the hospital to keep her on the medications she takes regularly, or she can spiral out of control and require weeks to recover.  

I would drive to her house, put all her medications in a sealed plastic bag, and meet my mother at the hospital. I also wrote everything in a composition-style notebook, but that meant we had to remember to bring the notebook with us, and we had to keep it updated when things changed.   

Ditching the Notebook for a Digital Solution 

About 15 years ago, my mother had multiple doctors prescribing medications for her, and as a result of their attempts to manage her pain, she was over-medicated. This led to a stay in rehab to wean her off her medications. After this negative experience, we realized how important it was to closely monitor her pain medications and make adjustments regularly. I became even more dedicated to ensuring her health records and any reasons for modifications were up-to-date and well-documented. 

At that point, I created a Microsoft® Excel spreadsheet to replace the notebook. That helped, but because I couldn’t update it until I was home from the doctor’s office, it would frequently become outdated. I also tried storing photos of medications and doctors’ contact information on my phone. This was better, but still not perfect.   

Then I learned that it was possible to create a personal health record using a digital app on my phone, and I knew immediately that would be helpful for me and my mother. 

Now that I use Huddle Health, I can easily find what I need when I need it. I can store everything in one place and make quick updates when medications or doctors change. My notebook and Excel spreadsheet couldn’t do that. 

I know there will be more trips to the emergency room or stays in the hospital, but knowing that I have all of my mother’s records organized makes these intakes and visits more manageable, and that is such a relief. 

Theresa Ortiz works in Operations at DrFirst. 

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