While 2020 has been marred by the imprint COVID-19 has left in its wake, it has also been a year of raising up those on the front lines fighting this devastating pandemic. We’re thanking first responders and medical professionals in a way we never have before, recognizing the sacrifices they all make daily to help ensure we all stay healthy and well. Essential Workers’ praises are rightly being sung, but there’s one group of people who deserve heroic accolades – especially this year – for whom the silence and isolation have been deafening and discouraging: the Caregiver.
November is National Family Caregiver Awareness Month and WEGO Health wants to support this cause and shine the spotlight on all of the incredible people who freely and selflessly give all of themselves to care for their loved ones with chronic illnesses or disabilities. They are superheroes hiding in plain sight, giving 110% of what most of us could fathom each and every day.
Because their work is done in the home, many outsiders are unaware of all of the work that goes into being a caregiver. In support of National Family Caregiver Awareness Month, WEGO Health interviewed 3 caregivers in very diverse scenarios, asking them everything from the most challenging and rewarding parts of being a caregiver and what one thing could make a radical difference in a caregiver’s life. Their responses are inspiring, sometimes hilarious, and very insightful. Please allow us to let them introduce themselves below and read on to learn more about what it really means to be a caregiver.
Q: Tell us a little about yourself as a caregiver. For whom do you care, what condition(s) do they have, and for how long have you been a caregiver?
My name is Ken Taylor, I’m 49 years old and live in a town outside of Phoenix AZ called Santan Valley. I am a caregiver to my wife Barby (yes we are Ken and Barby). Barby is diagnosed with an autoimmune condition called RSD/CRPS. But if you know how the autoimmune system works, you will understand that often there is more than 1 diagnosis. Barby has been diagnosed with other conditions like gastroparesis, intestinal ischemia, and others. I have been a caregiver now for over 15 years.
My name is Elle Cole. I’m a mom to twin daughters. One of whom is living with Sickle Cell Disease and Type One Diabetes. My daughter is 12 years old so I have been caring for her needs for 12 years. As a caregiver, I have to make sure that her meals are nutritious, that she takes her meds daily, sees her medical team regularly, and that together we monitor the cues from her body about how she is feeling
My name is Regina Paris and I’ve been a caregiver to both my mother and father. My father had a stroke when I was age 13 and that pushed me to become more than a daughter. I was involved in his rehabilitation and recovery. More recently, I’m a caregiver to my mom who has Parkinson’s and Lewy Body Dementia. I’d say at least 15 years of caregiving between the two.
Q: What is the most challenging part of being a caregiver and what is the most rewarding part?
Ken: The most challenging part is knowing that you don’t have all the answers. In the beginning, I felt so helpless knowing I could do nothing to stop or even lessen the fire-burning pain she was experiencing.
All the small victories are rewarding. Many of these victories come from researching and learning from other caregivers, patients, and providers. Through failed treatments, we researched on our own and found our own path to remission. Most people confuse remission with a cure however it is not the case. We undergo continued treatments and have discovered new boundaries to keep in this state of remission as much as possible. There are many bad days but many good days now as well.
Regina: The most challenging part of caregiving is that I’m remote. I don’t live locally and have to rely on caregivers and technology like the nest cameras to help me support my mom. The most rewarding part is to see my mom live independently at her home aging with grace and dignity. She also surprises me with a little dance here and there which just tickles me! I also want to mention the amazing caregivers that are looking after my mom. They are also a very rewarding part of this journey. They give so much of themselves and have quickly become additional family members.
Elle: Type One Diabetes is very hard to regulate. We count my daughter’s carbs to dose her insulin correctly, but as she grows she wants to be more independent and handle things herself. She is on an insulin pump, so we have to change the tubing every three days, but some days the tubing has blockage issues, which causes her not to get the amount of insulin that she needs. I wish it was a simpler process, but every day we have to be on alert and her medical devices can malfunction which is the hardest and scariest part. Also, having multiple chronic illnesses means that every day is a new experience so there is no “down” time. Additionally, we have private insurance so new devices, accessories, facility fees, and co-pays are all very expensive and come out of our pockets.
Q: How involved are you in medication and treatment plans for your loved one?
K: I am very involved in the medication and treatment plans for Barby. Many times, it has helped to understand the medications and the effect they have on her. You probably shouldn’t go to the movie theater after taking a medication that causes drowsiness. Also, doctors have asked me questions about Barby’s medications while she was sedated. Because I have a knowledge of the medications that work good and bad for Barby, she has trust in my decisions. Treatment options for Barby are something I feel educated about and would suggest these options to anyone. We have learned not to take any treatment option off the table but to prioritize the treatment based on how invasive to the body it will be.
R: I’m involved on a daily basis checking mom’s fluid intake, medications, vitals, hygiene, etc via texts and calls with the caregiver.
E: As a parent, I am involved in my daughter’s medical care every step of the way. As a result of living with multiple illnesses, which are a genetic disorder and an autoimmune disease, my daughter has to visit several specialists every 3 months for check-ins and lab-work. Therefore, I am the primary person that meets with her doctors and administers her meds. Although my husband helps, his primary focus is to work hard to help her have good health insurance.
Q: What can the pharmaceutical industry do to help caregivers navigate treatment decisions for their loved ones?
K: Provide transparency and honesty in manufacturing. Provide transparency in results of clinical trials. Proper warnings on long term medications. Transparency in labeling on medications. For instance, a QR code on the bottle that allows you to scan with a smart device and brings up desired information about the medication.
R: Having a clear path, essentially a complete patient journey as a guide to help the caregiver know where they are in the full disease journey. It would enable them to be more proactive in looking ahead and planning for treatment and disease management.
E: I’d love to see more programs to help reduce the cost of co-pays. In our case, co-pays can easily run over $600 per month. We have good health insurance, but the cost of insulin and insulin supplies is astronomical. Therefore, some families have to worry not only about their child’s health but also how their medical treatment will be paid for.
A few months ago, my husband was told that he would be laid off. Worry filled our minds even though we knew he would be able to find a new job, but often the healthcare benefits are delayed. Thankfully he ended up not getting laid off. I think pharmaceutical companies should have programs for families that are not low income but are facing financial needs to help cover the cost of medicine and related supplies.
Q: If there is one thing that could make a radical difference in a caregiver’s life, realistic or imaginative, what would that one thing be?
K: My own personal gene-editing CRISPR to splice in the perfect genes for me and my loved ones to live the perfect life as we see it, or a box of Cinnamon Toast Crunch.
R: To be able to teleport at a moment’s notice when your loved one needs you!
E: Being able to have a moment of reprieve. If I were wealthy, I’d set up a self-care program for caregivers where they could have a spa day, movie night, facial, game night, etc while having reliable childcare for an hour or two. Caregivers, both male and female, would be eligible to receive this gift once a month. I think this could be a breather that some families need in order to feel refreshed.
Think about all of those you know who are caregivers. Think of how hard they work even when they’re off the clock to care for and manage the health of a loved one. Think of a small way to say “thanks for all you do,” or “I see you.” In 2020, their roles as caregivers are harder yet more important than ever. This National Family Caregivers Month, we encourage you to find a way to encourage or help them. In some cases, it could be something as simple as a box of Cinnamon Toast Crunch!