Former First Lady, Rosalyn Carter, is attributed to a quote that perfectly sums up the impact and the deep reach of caregiving in all of our lives.
"There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."
There are over 50 million people in the United States who care for adults and children afflicted by some type of medical condition, with illness preventing these individuals from caring for themselves. Whether caring for an elderly parent, a seriously ill spouse or child, or some other special person in need, those individuals who are on the front lines of caregiving put themselves second as they immerse themselves in a life of personal sacrifice of time, energy, and income.
In this Medable blog we celebrate November as National Family Caregivers Month and highlight the lives of four individuals who are caregivers. Legions of people call themselves caregivers and do so in quiet strength and without expecting anything in return for their selflessness. It is an isolating existence; one that often produces a sense of frustration and despair. We live in a culture where a growing contingent of Americans are thrust into this role - we call upon everyone to support them during this month and always.
Project Coordinator, Medable
My Son Ethan was born with CHARGE Syndrome in 2017, so my wife and I have had to take on the caregiver role as well as being new Parents. Caregiver duties include drawing up daily medications, giving meds, g tube feedings, trach care, suctioning, and transportation to numerous Doctor visits per month at Children’s Hospital.
Q: How do you balance your two lives; caregiver and non-caregiver?
My Son Ethan has a Physical Therapist, Occupational Therapist, Speech Therapist, Vision Therapist, and Hearing Therapist that all come to our home during the week. During the pandemic, the home visits have stopped, but the therapy sessions continue via zoom meetings. This is not ideal, but my wife and I have become a ‘jack of all trades’ to help continue Ethan’s progress. Juggling work and therapy sessions has been challenging and tiring. We do what we have to as parents and caregivers to make it work the best we can.
Consultant. Public Speaker. Advocate. Non-Profit Leader
Manager, McNary Consulting
I was 18 when my oldest son Austin was born. He was a normal healthy baby but by age 3, following my second son Max’s bith, it was apparent something was wrong. Austin and Max were diagnosed with Duchenne about 3 months later. My now 13-year-old youngest son was diagnosed three years ago with primary immune deficiency at 10. So, I am a mom and caregiver to three sons with rare diseases.
I have always tried to separate being a mom from day to day caregiving by having daily help with Austin and Max's physical needs. At 21 and 18 they need total care, lifting, bathing, grooming, everything. I have had to work and have additional clients to earn enough money to supplement the personal care budget afforded to us by state medicaid. It's important to me that Austin and Max have care from professionals- I don't like the dynamic of being the only caregiver. That said, I don't have 24/7 care for them- so much of it still falls on me. James needs weekly infusions, which I have to provide him. That can be a battle- what 13 yr old wants his mom pushing needles into him every week. It's hard to even get them to shower at that age and take a multi-vitamin. Caring for the boys’ healthcare alone can be a full time job - from juggling specialists visits, appealing denied medications and durable medical equipment, to making sure they have all of their specialty meds. So much paperwork. It's mentally draining and there aren't enough hours in the day. I often joke that I need an admin, just to deal with that piece.
Q: How has the pandemic impacted the emotional strain that already existed as a caregiver?
Worrying about bringing the help we need, PCAs, nurses, etc into the home has weighed on me. On one hand, I can't do this alone- it's been almost 9 months. For the first month, I didn't have anyone come into the house. It was way too much work for me to do alone while working full time and juggling my 9-year-old daughter's remote schooling and care. On the other hand, my sons likely wouldn't survive COVID. There would be so much guilt on my side if someone I brought in gave the virus to one of the kids. Their immune systems are all compromised- I have seen James be intubated when he caught paraflu at age 9. I think I have a fair amount of secondary medical trauma so we live in fear of people. I'm also totally alone with the kids. As a single mom, I used my work travel and time away as a time to recharge - it’s going to be a long time before that can happen again.
I've also had to give a lot of thought to what we would "do" if one of us got COVID. What would the kids do if I was sick and couldn't care for them? What if I didn't survive? It's crazy, maybe, but it took this pandemic for me to buy life insurance, and to start on a will. I realized they really only have me. These terrifying thoughts are what keeps us isolating as long as entirely possible.
Q: How do you make sure that you have “me time?” Describe those private moments.
I am a huge believer in maintaining a sense of self even with kids, especially with kids with health conditions. I take what some might call excessive amounts of time to myself. I set reminders on my calendar to exercise on my spin bike or do yoga daily- I walk the dogs, I take time to read and write when I feel the urge. My kids are as independent as they can be, and I encourage them to find ways to do things themselves if possible. I also have regular help, as I mentioned. I don't believe in being a martyr - I don't think it helps your loved ones to believe you're the only one who can care for them either. With any luck, they will outlive me and need to learn how to have others do things for them as well. I used to add a few days or sometimes just hours to every work trip - just to explore. I love to travel - I love to try new foods and see new sights. The kids and I travel a fair amount together, but that's usually exhausting. Where traveling alone or with a colleague is energizing. I hope we can get back to that life soon!
VP of DCT Innovation, Medable
When my dad was diagnosed with Prostate cancer eight years ago. It was a shock for the whole family, and due to my medical background, I was the obvious choice to support him where and whenever needed. He passed away three years after his diagnosis and my role as caregiver expanded during that time as the disease progressed. The most challenging part of being a caregiver is realizing that you are about to lose a significant person in your life. In the last days of his life, you live in constant fear of the next call, is it now, is he dead, is he dying? This phase took out all my energy, making it difficult to cope. Unfortunately, I didn’t cope as well as I should because I kept all my feelings of sadness and impending grief inside without sharing with others. The experience made me think that I needed to be more open with my feelings, something I hope to improve upon in a future and similar situation.
Q: We talk often about how our healthcare system needs to account for indirect costs of being sick, such as lost productivity and the emotional toll for both the patient and their caregiver. Can you expand on what these indirect costs mean to you? What are you doing to help offset these costs?
I believe that you only have 100% mental capacity. When you are a caregiver, you allocate a big amount of this mental capacity in taking care of your loved ones. This directly effect productivity, which can and will result in increased frustration and loss of focus. We are all unique and we all have different ways to measure the value of a treatment. There is definitely room for improvement in this area. I do not believe that we will be able to measure this 100 percent accurately. But by utilizing technologies where the patients and caregivers are, we would be able to collect precious data that could help us calculate a more precise value of a treatment. As the shadow of the patient, a caregiver will rarely be recognized, but the importance of this role is a fact and will never disappear. The value, however, comes mostly from the patient and not from others outside that experience. The industry must recognize the value of caregiving and that behind a patient, there is nearly always a caregiver/caregivers involved. It has taken far too long to put action behind the words “patient centricity”, let’s not make the same mistake with the patient caregivers.
SVP, Strategy and Solutions
In February 2019, my dad was diagnosed with late-stage gastric cancer. A month later, my mom found out that she has breast cancer. My brother and I barely had time to absorb the shocking news before we had to spring into action. My brother lived in northern California, near my parents, while I lived across the country on the east coast. We immediately started looking into treatment options and reaching out to doctors for second opinions. We had to make difficult decisions to try to balance their quality of life while not giving up the fight. For almost a year, my dad and mom not only went through chemo, surgery, and radiation therapy but also dealt with multiple emergency room visits and hospitalizations in between. In January, my dad lost his battle with cancer and passed away. My mom has now been cancer-free for a year but is coping with the progressive symptoms of Parkinson's disease.
Q: The term “patient-centricity” is often used to describe how biopharma companies involve patients in each element of the drug discovery/development process. How would you define “Caregiver-centricity?”
Over the past few years, I have been working on patient-centric clinical trial solutions with the key objectives of expanding patients' access to clinical research and reducing patients' burden of participation. The focus has been almost exclusively on the patient, and the caregiver was only brought up occasionally. Through undergoing the intensive caregiving period for my parents, I realized the importance of the caregiver role. For some patient populations and diseases, many patient care activities are handled by the caregivers. Some caregivers participate in making treatment decisions. The burden on the caregivers can be immense, and sometimes a patient has to rely on multiple caregivers working together as a team. Their ability to support the trial participation, in person or sometimes from a remote location like in my situation, can determine whether the patient can participate in the trial. Therefore, we have to incorporate caregiver-centricity in our solutions. Making caregivers aware of research opportunities and providing tools for convenient study information access (e.g. managing visits, medications, reporting events, and communicating with the site team) can ultimately help the industry achieve patient-centricity.