The best problems to solve are your own
Photo by Olav Ahrens Røtne on Unsplash
One of the hardest parts of being a caregiver isn’t the care itself. Rather, it’s the coordination and communication involved. In 2023, my grandma lived with my sister in Florida, I was in Virginia, my brother was serving overseas, and my parents were five hours south of my sister. Coordinating something as basic as a doctor’s visit became a logistical nightmare. Language barriers and continuity of information added to the challenge. As I step into a full-time caregiving role, I’m realizing the best problems to solve are your own.
In this article, I'd like to share a bit more into my experience, notably the challenges, in hopes that we create better solutions for other caregivers and their loved ones. As a bonus, I recently launched a caregivers app (link) for myself and my family to use to mitigate some of the problems we've identified as a nod to Paul Graham's 2012 essay: How to Get Startup Ideas.
Background
Before diving into the problems, it's important that I give some context as the location of where my grandma called home is critical to the problems I'll share later. My grandma has been living with my sister since 2017, until she was admitted to a nursing home in January 2024. My grandma has had a fairly complex medical history for many years, but her health conditions became too complex for my sister to manage alone towards the latter half of 2023 when multiple hospital admissions, emergency room visits, and rehab facilities became the norm. To this day, I still do not fully comprehend how my sister managed so much on her own, but I'm slowly beginning to recognize the challenges she faced. Also, for some insightful reading, I found a lot of overlap in the problems I've encountered with the problems described in an article I read the other day: Designing and Evaluating IT Applications for Informal Caregivers: Scoping Review.
Living at Home
The problems faced at home varied based on the progression of our grandma's health. In the beginning, it was more coordination. Things like ensuring someone was able to take grandma to a doctor's visit or pick up her prescriptions from the pharmacy. My sister handled these types of tasks herself for many years and it wasn't until the last 1-2 years that we began to help out. As I began to get more involved, the following were some of the key issues that I noticed.
Information silos
My grandma's PCP still uses paper charts, her ophthalmologist has their own information system, and her other specialists are all part of an academic medical center (AMC) that uses Epic. Ensuring each of her care providers had the most, up-to-date information was certainly a challenge. We had to carry paper copies of past appointments, lab results, and medications to every visit just to make sure their records were updated. This became more complex as I, and others, became more involved since we'd also have to ensure the information we received, during a visit, was passed to the next person. These communications usually happened via Facebook messenger, but I also had a Dropbox file I managed for many years to keep track of her medications. As expected, neither were great options and I also didn't do a great job of managing the dropbox file.
All that to say, one of the key problems we've faced is the access to the most up-to-date information about my grandma's health records. Epic's patient portal solution, MyChart, is fantastic when we need information about one of her visits from the AMC, but it's not when we needed information about her current meds, which were spread across multiple pharmacies, her PCP, or her opthamologist. Keep in mind, the problem spanned multiple caregivers for us as it wasn't always the same individual that brought her to visits. Even after moving into a nursing home, which uses PointClickCare's EHR, this is still a challenge.
Task management & coordination
Everyone leads busy lives. Ensuring tasks, especially for care coordination activities (e.g. who will take grandma to an appointment, who will renew her identification), were assigned or completed was an entire part-time job in itself. We used Google calendar quite a bit to pre-plan as much as we could, but relied heavily on Facebook messenger to coordinate as things came up. It worked until it didn't. Managing calendar invites, life events, and flights caused us to miss appointments at times or reschedule appointments last minute. Surprisingly, this became a larger issue later when she entered into the nursing home. Thus, I think the management of all the care coordination tasks, especially across multiple caregivers, is another key challenge.
Financial assistance
With health spending at 17.6% of GDP in 2023, we all know healthcare is expensive. As grandma required more assistance at home, my sister looked into a myriad of solutions that could help ease the time and effort she'd spend caregiving and/or decrease the financial strain that it was causing her. I'm unable to speak much about this as I didn't get involved towards the end, especially after she was admitted to the nursing home, but from the little I was involved, it was painfully frustrating to navigate the financial side of healthcare in the United States (US).
In one example, I vividly recall struggling to help my sister get all the information needed to submit for home health services. It was a nightmare to figure out who to call, why I should call them, and how they were related to Medicaid and/or Medicare since my grandma is 'dual eligible'. That is, she has both Medicaid and Medicare. Long story short, we needed to return the AHCA 5000-3008 that we received via snail mail by having her PCP fill it out. I scheduled an appointment with her PCP, filled it out with her together with my bookbag of notes from all her previous visits, and got it mailed back to Senior Connection Center, which is one of eleven Aging and Disability Resource Centers (ADRCs) in Florida that manage these benefits. We had to anxiously wait on their response, via snail mail, until we began to correspond via email and found out she was missing an updated medication list. The entire process probably took a few weeks of coordination and communication and represents just one simple example of navigating financial assistance. On one occasion, we needed to urgently hire private assistance and paid out of pocket for healthcare that was both subpar and expensive.
I'm sure some of the experiences here are more modernized than I lead on, however, the complexity and coordination involved in simply applying for financial assistance is extremely frustrating and challenging.
Language barriers
My grandma has very limited proficiency in English and relies on us to help translate what her doctors are saying to Cantonese. A dialect of Chinese. As a family, we all have different proficiencies in Cantonese (I'm probably the worse), but also different proficiencies in medical jargon (I'm the only one in healthcare as a pharmacist). For the most part, I think we've done pretty well when she was at home, but it's more akin to a game of telephone, if not a nightmare, when she started residing in the nursing home.
Trust is key when it comes to healthcare and I think simply speaking the same language can go a long way when it comes to the doctor or nurse being able to describe the situation in the patient's native tongue. With that being said, it was extremely challenging to find healthcare providers in the area that spoke the same language (e.g. Cantonese). This didn't appear unique to my grandma either as I've found a lot of my Chinese friends are also going through similar experiences when it comes to simply finding healthcare professionals that can speak a certain language.
Living in Nursing Home
After my grandma was admitted to the nursing home in January 2024, some of the problems disappeared, but many of them remained with plenty of new ones that arose.
Language barriers
As if communication couldn't be any worse when she was living at home, it became an absolute nightmare when she was residing in the nursing home. No one spoke Cantonese and miscommunication was frequent. Issues were no longer just medical either. Rather, they became the most basic quality of life requirements like having enough water during the night, vocalizing what food she liked/disliked, or a simple shower. It didn't take very long for us to realize that language could an very critical factor in the well-being of an individual. As I'm much more involved now, I've found a lot of benefit in physically being at the nursing home to advocate on my grandma's behalf, but also in ensuring that she is socially engaged since there is no one else that speaks her language.
Vision impairment
A nice segue from language that is very much related are the challenges related to my grandma's vision. She's completely blind in her right eye and largely blind in her left. Isolation is an understatement considering she isn't able to communicate with anyone either. Previously, she was much better at using her phone to call family and friends, but her vision has deteriorated to the point where this isn't really viable anymore. As technology, especially language language models (LLMs) and voice have come a long way recently, I took her shopping for a new phone in 2024. We ended up going with an Apple iPhone 15 given all the accessibility features they had and I'd spend the monthly visits I had with her teaching her how to use Siri with her voice, in Cantonese, to receive and make calls. To this day, it's not even close to perfect, but I've come to realize that accessibility is such a game changer when it comes to individuals that are vision impaired. We're currently working on teaching her how to use Siri to do other tasks like translation and using it to figure out the current time.
Goals
In March of 2025, I took my first month of Family and Medical Leave Act (FMLA) to be there for my grandma. She's dropped 30 lbs since she was admitted to the nursing home, she was bedridden, and she was not in very good condition. I made it my goal to ensure that she'd be able to return to her previous state, but also to ensure that we were able to accommodate any goals that she had as well. During my FMLA, I was able to spend every day with her making sure that we had a prioritized list of goals that we worked towards. Some of these were medical ones that improved her overall condition like regaining the 30 lbs she lost or ensuring her blood pressure was managed, but others were quality of life ones like getting a Chinese braised beef brisket and tendon meal cooked by my dad. I've used the list of goals to prioritize my day, but also to communicate to our family about things we should do. I've gradually come to believe that having a list of goals that we can prioritize, track, and share with the family is a key ingredient to ensuring we're doing the best we can as caregivers.
Data, Health & Monitoring
Hypertension, especially isolated systolic hypertension, is often seen in elderly patients. My grandma is no stranger to this and has had a lot of issues with blood pressure (BP) management over the years. Though, when she moved into the nursing home and became much more bed ridden, the number of BP medications became an issue and she was often hospitalized for the inverse: hypotension. Gradually, the number of blood pressure medications were reduced as they were discontinued. The issue arose again as she had multiple episodes of systolic BPs >180 after I began working with her daily during my FMLA when I had her walk with me daily, do physical exercises, and actually eat her meals.
Of course, as an informatics pharmacist, my natural instincts kicked in and I recognized the importance of tracking and trending her BP, her medications, and her weight. I went ahead and purchased a Withings Body Smart weight scale to track her weight and a Withings BPM Connect Smart Blood Pressure Monitor to capture her BP and heart rate. The data I've collected over the last few months was, and continues to be, a key talking point I use with her care team to manage her overall health. Further, my grandma has become much more conscious of what the numbers mean and more empowered and invested in her health. I may be a bit biased here, but I think leveraging personal health devices (PHDs) to monitor your loved ones health is a win-win for all parties.
Btw, I also personally use these two devices to monitor my own health and loved the integration it has with my Apple 15 Pro. I been much more health conscious about my own health and have a variety of PHDs to monitor my progress.
Caregivers app
I started experimenting with full-stack development back in September 2024. It's proven to be a very valuable skillset as I was able to ideate around a solution that could tackle the problems I've been experiencing to execution in just a few days. Granted, it's not feature rich and doesn't tackle every problem I've shared in this article. You can check it out for yourself here: https://caregivers-seven.vercel.app/, but I'll outline some of the key features that I've built out below:
Centralized location for all of my grandma's healthcare information.
Shareable with any family member. It's a web app so no downloads and easily accessible via internet. All caregivers are viewable and listed.
Easy access using social logins (e.g. Google) to ensure only certain individuals (family and close friends) have access.
Medication tracking so everyone knows when, why, and how it should be taken. I'm an informatics pharmacist, so it's fully modeled to use RxNorm & SNOMED-CT in the data model so semantic interoperabilty is preserved.
Goals tracking so everyone is aware of what's most important, how grandma is progressing, and any notes related to the goal itself.
Document management to upload and share any document, especially financial and legal documents, but also clinical notes, with all caregivers in the family.
Oh yeah, it's also Health Level Seven International Fast Healthcare Interoperability Resources (FHIR) native as I intend to make sharing data as seamless as possible. Especially when it comes to applying for financial benefits (FHIR Questionnaires & SDC for the win!). I don't have a FHIR Implementation Guide (IG) setup, but all the data that powers the app is stored in Google Cloud's FHIR Store.
Concluding thoughts
Despite being a pharmacist in the healthcare industry for the last 15+ years, it's been a very eye-opening and humbling experience for me as a new caregiver. Unfortunately, I feel as though we still have such a long way to go as a society when it comes to supporting caregivers and their loved ones. I really hope that some of the articles I write can help provide insight into some of the key challenges I'm facing and I hope that my caregivers app can serve as a bit of an inspiration to what I'd like to see and use in my day to day. Lastly, there's a lot more I want to talk about, especially about my managing my own emotions and well-being, but I'll save that for a future article.