Ten Years Ago I Created a Tech Solution to Help Caregivers, My Own Caregiver Journey Has Become Even Harder.

Ten years ago, I created a tech solution for caregivers so they could better organize all the things family members are managing when caring for a loved one. Things like appointments, medical records, legal documents, communicating with other family members, friends and even home care providers who are also involved in care and to more easily get help finding resources and guidance in a health crisis. I did this because I was a caregiver for my mom who had a stroke when she was just 58 years old and as a result, lost most of her vision.

I didn’t set out to start a tech company. At the time, I was a single mom to two daughters and a respiratory therapist who saw all the gaps in the healthcare system and was made even more aware when I became a caregiver myself. I was overwhelmed and thought others might be too. I started a professional patient advocacy service where I offered guidance to families going through a crisis and from that, created technology to better organize and connect care teams. Looking back, I honestly don’t know how I did it. It was a miracle and it took things I didn’t know I had in me and some incredible people along the way who believed in what I had cobbled together, having no background in technology but knowing a whole lot about caregiving and the healthcare system. I am grateful more people are aware and talking now about family caregivers. Pharmaceutical companies, insurance companies and many celebrities have recognized the challenges and costs of caregiving. I am grateful hundreds of employers big and small offer a solution I created to their employees who are caring for a loved one. Still, most employers and the country as a whole don’t recognize how much caregivers are suffering.

I so understand the suffering. As I write this, my entire day has been derailed. My mother, who now lives with my husband and I, bumped into an open bathroom drawer yesterday and bruised a rib. She is in a lot of pain and can barely move so, of course, I am staying home with her to make sure her pain is managed, she is fed, drinking enough water and has help to go to the bathroom. On a typical day, without an injury, I make her breakfast, make sure she takes her pills and showers. We chit chat over the newspaper, I feed her cat, make sure she has a good lunch etc. I am fortunate. She dresses herself and showers herself. I change her sheets and wash her clothes but currently she is able to do basic care on her own. I fill her daily pill minder and give it to her each day. She is doing much better since she is living with us but it is incredibly stressful in a way that is constant and difficult to describe. Some days she has severe eye pain as a result of the stroke, there is always a concern she may fall, keeping her eating enough is a constant battle and she has become forgetful.

Last December she fell just before Christmas. She said she suddenly got dizzy for no apparent reason. We found out at the hospital, she had a urinary tract infection which likely caused her to become dizzy and fall. The hospital stay was a complete nightmare. She was out of her mind because of the UTI and pain medication. The hospital staff assumed this was normal for her and insisted she had to go home as Medicare wouldn’t pay to keep her in the hospital. This required us to be with her around the clock. She was certain thousands of ants were crawling on her ceiling and that there was a waterfall in her kitchen. She became combative at any suggestion this was not the case. She was urinating in her bed, which had never happened, and I really felt like I could not care for her anymore. I was at a breaking point. The indignity of it, for her, was what got me. At one point I had to bath her as she sat on her walker because she had wet her bed. We were both in tears. I had guided and advised so many in my situation and been someone caregivers looked to for support. In that moment, I felt completely emotionally and physically exhausted and like a failure. I felt like nobody, not even my husband or daughters could possibly understand the despair she and I were feeling. I think we both wanted to run away but from what? There is no getting away from aging, from parent/child dynamics and each of our journeys are completely unknown. How long will this go on? How will it end and when it does, what will be left of us?

I remind myself how fortunate I am to still have my mom. So many of my friends have lost both of their parents. It gives me great joy to see her happy and well. A huge part of me enjoys caring for her and making sure she is happy and secure. Another part worries about the physical and mental toll it is taking on me and what shape I will be in when my mom is gone. Last year I had an accident and as a result a concussion, torn shoulder and fractured knee. Being a primary caregiver who also has physical and cognitive deficits was very eye opening. It gave me a better understanding of her feeling a lack of control and also exacerbated fears of what would happen to her if something happened to me. The worry is ever present.

Thank God we both see the humor in so many of these challenges. I still learn things I had never known about my mom. We have wonderful conversations and so much laughter. She recently shared something with me about my dad I hadn’t known before and it made me wish he was still with us too. Sometimes I feel guilty for feeling frustrated, inadequate, or even resentful. There is quite the trunk of relationship baggage accompanying us on this journey. Even the best relationships have a past to navigate and there is so little in the way of support for those of us caring and the ones being cared for. It’s all okay and normal and to be expected but it’s damn hard.

While I still think a solution to manage the technical and organizational aspects of caregiving are important and am exploring how new advances such as large language models and AI can be harnessed to help caregivers, I also want to focus on learning more directly from caregivers about the relational challenges and the things that technology isn’t so good at solving. I have ideas but I want to hear from and find community with all the other caregivers I know are out there experiencing similar and different challenges. I want to be real and open and make a space for others to be vulnerable about how hard this is and how we can help one another. So many have been trying to solve this and it doesn’t seem to be getting much better. My theory has always been that no matter how many care navigators are assigned to help, there is not way to take the burden away from the primary caregiver. From the beginning the solution I created was made to support the primary caregiver because I knew from being in the role, we are ultimately the ones doing the work.

I brought ?early recognition to caregiving as a problem, I was someone who was talking about caregiving being a challenge worth finding a solution for when few recognized it as anything more than another responsibility primarily for women to just deal with. I think my early efforts made a difference but there is still so much work to be done. Caregiving is bipartisan and impacts every race, age, and gender. I hope many will join me in creating a symphony of voices that can no longer be ignored.

Let’s start with a conversation on December 12, 2024 at 8:00 PM Eastern. I want to hear from caregivers about what their greatest challenges are and what will make things better. You can register for the virtual webinar here.