Unpaid caregivers–often family members who look after ailing or elderly relatives–are not only unsung heroes of healthcare, but one of the healthcare industry’s most impactful stakeholders. There are nearly 100 million Americans who provide–or have provided–unpaid care for an adult loved one. Some provide care around the clock, while others balance this caregiving with working a full- or part-time job. So why do 76% of caregivers say no one taught or prepared them to perform their caregiving responsibilities, and why do so many liken the experience to holding a second full-time job?
Caregivers don’t have a playbook, and that’s why significant numbers of them–whether they are members of the “sandwich generation” that care for children and elderly relatives at the same time, or those “severe caregivers” most at risk of burnout from dealing with difficult medical cases–report putting major life events on hold, abandoning hobbies and delaying vacations in order to handle all of the scheduling and logistics involved in caring for a loved one.
Caring for a family member who has a chronic condition or disability is an honor, but it can also be an isolating and difficult experience. Throw in a global pandemic and many unprecedented changes to daily life and a set of brand-new challenges ensue. I am the primary advocate and caregiver for my developmentally disabled older brother. Even though I knew for many years that I would inherit his care, and even though my parents went to great lengths to prepare me, figuring out what to do and how to do it was still a difficult journey of discovery. Perhaps it would have been easier if I had participated in Matt’s care all through my adulthood rather than starting to take it over in the last five years of my parent’s lives, but I very much appreciate that they did their best to protect me from the demands of a handicapped sibling through my early and even middle adulthood as I found my feet in life.
As time went on, I began to take over Matt’s care. He lives independently and has a part-time job at a grocery store, and when things are going well, he manages fairly independently. It’s when things change or something goes wrong – the bus doesn’t come, the errand took too long and he missed the bus, the sink is leaking – that he needs help. He doesn’t drive and he struggles with problem solving, so periodically he gets stuck someplace. For a long time, his solution was to call my father to come rescue him in the car. I work full time, and until recently I commuted to Boston by train. Not only could I not drop everything to rescue Matt at some random time of the day, but I wasn’t even near a car most weekdays. Not to mention business trips. We needed a transportation solution and it was the MBTA’s The Ride program through which Matt could take Lyft. Phew! We now had an emergency transportation solution.
Anyone who cares for someone who can mostly manage on their own — but not quite, knows, there is a long list of situations similar to Matt’s transportation problem. Eventually, you find a solution — the right service from the right agencies or the right balance of responsibilities between siblings and caregivers. I think to myself, how could I realistically provide the care I do for my brother if I didn’t have my two other healthy siblings living within a few hours of one another. None of us think Matt should ever be more than two or three hours away from one of his siblings.
Then COVID-19 happened and everything changed. The bus schedules changed. Ridesharing wasn’t a good option for social distancing. Everything felt new and unsafe and unpredictable and things we could count on before stopped showing up. In the spring, the rules changed every couple days. For Matt, he couldn’t buy the things he normally buys – for a few weeks there the grocery stores didn’t have his favorite: bagels. Substituting on the fly is not Matt’s strong suit. Change, like for many of us, is not Matt’s strong suit.
What’s more — The previous arrangements for oversight for Matt were based on integration into the community. This is the gold standard for supporting our populations with the greatest needs — from the handicapped to the aging – it’s effective, it’s emotionally healthier than handicapped-only services of any kind, and it’s cost effective. I knew that every day he would be with people– at the local Community Center, at his job, etc – that would look out for him and would call me up if something looked off.
Just like transportation – everything changed. The Community Center is closed. He went back to work, but the bus he used to take wasn’t running until early October. I showed him how to ride his bike, knowing that if the bus didn’t come back he was going to need a new job in November. Ever try to find a new job for a 62-year-old disabled man in the middle of a pandemic? Luckily, he has been able to transfer to a grocery store closer to his apartment in the same chain. It’s a long walk (and in the winter it will be a long unpleasant walk) but at least there is a solution if the bus doesn’t run.
As caregivers during COVID-19, we’ve lined up additional services to help us navigate care for Matt. Each of these services are wonderful but are all siloed by the type of service provided: cooked meals, transportation, shopping and errands, cleaning and laundry help. So now there are three or four agencies that I need to coordinate. The person who comes on Mondays is sick, so I need to make sure Matt understands that and figure out how the grocery shopping is happening. Someone else needs to come on a different day. It’s endless. Communication can be a challenge with some of the additional service providers and it takes a surprising amount of time to do all the coordinating.
For many people, a caregiver can mean the difference between positive health outcomes and continued illness, complications, and a lack of confidence in the system. But caregivers have a tough and often lonely job – especially without family members to help support. So tough, in fact, that caring for a person with a complex or chronic condition can cause problems that range from anxiety and depression to grief, social isolation and even cognitive impairment.
It’s a problem that cuts across all ages, races and income brackets. And with our country’s aging population, more people will be assuming the caretaker role as time goes on.
Support groups exist for people who are struggling with caring for a loved one, and as many as 64% of caregivers use at least one digital tool to help them to keep appointments and medication schedules straight and otherwise manage a complex care routine.
And that’s where my two worlds collide. As the Chief Engineering Officer at Quil and a primary caregiver to Matt, it’s my deepest aspiration to offer technology that can truly help people navigate similar scenarios. It’s time for technology to see the caregiver as the important player that he or she really is. With Quil, we offer a solution that gives not only connection to caregivers, but a range of helpful content and step-by-step instructions on how to do the next right thing in a complex care situation that the caregiver is likely not trained to navigate.
A person has the option to designate a loved one as their caregiver, effectively bringing that person in as an integral part of the care journey. At the same time, Quil offers caregivers their own care journey, which is separate from–and parallel to–the care recipient’s journey. For example, if a care recipient has an important medical appointment coming up, that care recipient’s journey will feature relevant content about their condition or procedure–as well as tips on how to prepare for the appointment–while the caregiver will get directions to the medical office, tips on parking and other useful information.
It’s difficult enough to take care of a loved one — a caregiver should not also have to navigate our country’s Byzantine healthcare system without help. Community and familial support is crucial but it is technology that can bridge the gaps in between and keep us moving forward all along the way.
Quil, a digital health company, delivers actionable and personalized health itineraries for patients and caregivers, answering the question “What Happens Next?” in their healthcare journeys. Quil is a joint venture of Independence Blue Cross and Comcast. We combine the powers of precision data, state-of-the-art technology, and security with unparalleled consumer reach to help individuals navigate today’s chaotic healthcare landscape. Headquartered in Philadelphia, PA with additional offices in New York City, Quil serves individuals, healthcare providers, and payors nationally.