Financial, Logistical, and Moral Support: “Caregiving Is Bigger Than Myself”
A Q&A with Accessia Health Patient & Caregiver Advisory Council Member Aaron Mishoe
Millions of Americans serve as unpaid caregivers for their families and loved ones. According to AARP’s “Valuing the Invaluable” report on family caregiving, in 2021, “38 million family caregivers in the United States provided an estimated 36 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $600 billion.” Serving as a caregiver is no small undertaking, and it can look different for each individual in that role.
The role of a caregiver is to provide and facilitate care for those with a rare or chronic condition. This can be anything from managing appointment logistics or coordinating activities to handling insurance matters and organizing home health aides. Regardless of the circumstance or person’s diagnosis, having a community of support is vital for caregivers when they may often feel like they are giving their all to their loved ones.
As we recognize the importance of caregivers, we talked with Aaron Mishoe, a member of the Accessia Health Patient and Caregiver Advisory Committee, who supports his wife and daughter who both have Fabry disease. Fabry is a rare genetic disorder that requires specific – and sometimes costly – treatments. Accessia Health’s patient assistance programs are designed to shoulder the burden of these costs so patients can control their lives, rather than being controlled by medical expenses.
In this new interview series, we’re hearing from patients and caregivers about their experiences with chronic diseases and how Accessia Health has played a role in helping them manage their care. Below, Aaron shares the challenges and rewards he experiences as a caregiver for loved ones with Fabry disease.
Q: Tell us about your loved ones who are living with a chronic condition.
A: Both my wife, Deborah, and daughter have Fabry, a condition that runs in my wife’s family. She grew up in a pastor’s home as the middle child of five. Despite the challenges of living with Fabry, her father dedicated 40+ years of service as a pastor throughout the southeast. Three of my Deborah’s siblings also have Fabry. We’ve been married for over 20 years and have been blessed with two children – our daughter Abigail (18 years old) and son Hudson (7 years old). Abigail is currently a freshman in college and is pursuing a degree in nursing.
In most cases, Fabry disease manifests itself in women in varying forms with different symptoms, including burning pain in the feet and hands, gastrointestinal issues, the inability to regulate body temperature, a lack of energy, memory and focus issues, and a buildup of GL3 in the bloodstream which impacts most of the body’s key organs (heart, kidneys, etc.). Both Deborah and Abigail are currently active and able to work outside of the home.
Q: What are your primary responsibilities in caring for your loved ones?
A: My primary responsibilities include providing financial support for insurance, moral support through encouragement, and logistical support in assisting with organizing medication shipments, dealing with insurance questions, and home healthcare issues. Providing moral support requires balancing a fine line between encouraging my wife and daughter to achieve all they can, while also recognizing that sometimes they have limitations. I always remind them that while they have this disease, it does not define who they are.
Q: What challenges have you experienced as a caregiver?
A: Speaking honestly, sometimes I can get in my own way when caring for them. Balancing caregiving with life, work, and other commitments has to be done carefully, but just as I encourage my wife and daughter to achieve all they can, I remind myself that caregivers are capable of doing so much more than we think we can.
I also often feel guilty because I am unable to bear more of the burden for my family. I cannot take their infusions, and I cannot go through the different tests and studies. They have to endure that on their own, and while I am supporting them, it is their arms the needles go in.
Q: Have you encountered any challenges in advocating for your loved ones’ needs within the healthcare system?
A: Yes, definitely. The simplest way I know how to explain it is the analogy of a baseball game. If you learn and know all the rules of the game, you can play really well. Unfortunately, the healthcare system is very much a game where the rules are always changing, and half the people you talk to do not really know or understand the rules. It is easy to get led down rabbit holes that end nowhere. At the same time, we are incredibly thankful and grateful for all those who advocate on our behalf.
Q: Conversely, what are some of the rewarding aspects of being a caregiver?
A: The number of people my family has been able to meet, and the opportunities that have been afforded to us are quite amazing. None of this would have happened without my family’s diagnosis and our exposure to the Fabry community.
Q: Caregiving can be demanding, physically and emotionally. Do you have support systems in place to help you manage your caregiving responsibilities? What strategies or coping mechanisms can caregivers employ to manage stress?
A: Our local family has been an invaluable source of support, and my family is incredibly grateful for them. Although managing the responsibilities and stress of caregiving can be hard, I recognize that the task is bigger than myself. That realization is what motivates me. Life is stressful enough without being a caregiver, so I remind myself that there is no need to add stress from worry or fear. Placing trust and hope in a cause bigger than yourself can be very comforting.
Q: What advice would you give to someone who is just starting their caregiving journey?
A: Empower yourself to learn as much as you can. Ask hundreds of questions, as communication goes a long way for the patient. You have to be the one advocating and pushing for things to happen in most cases. Never take no for an answer; always push back and ask why. But also, be kind and do not burn bridges because you’ll often need to work with the same folks over and over.
Q: What made you want to be involved with Accessia Health’s Patient and Caregiver Advisory Committee, and how has Accessia Health helped your family?
A: Accessia Health has been very helpful to my family through many years of financial assistance. The Patient and Caregiver Advisory Committee is an opportunity to give back to a community that has made an impact on my family’s life.
Q: Are there resources or support networks that you would recommend to other caregivers?
A: In addition to the support from Accessia Health, the representatives from medicine manufacturers are a huge help. They assist us with our insurance and home health needs.
If you or someone you know is living with Fabry disease, Accessia Health can provide comprehensive support through case management and financial support for your healthcare expenses.
The following resources are available for caregivers and patients. For a complete list, click here.
- Caregiving Resource Center
- Family Caregiver Alliance
- National Alliance for Caregiving
- Fabry Support & Information Group
- National Fabry Disease Foundation
Pictured – Aaron and his wife, Deborah, and their children, Abigail and Hudson.