- Last Updated: 09 January 2024 09 January 2024
A Caregivers Perspective
Hi, I’m Kim Moy. I’ve been a caregiver for over a decade, which includes caring for my husband — who is now disabled from ME/CFS — while also raising our two school-aged children and working full-time management jobs. For several years, I also shared caregiving responsibilities for my elderly parents with my sister until they passed away a few years ago. My mother suffered from Alzheimer’s and died of COVID, which she caught at the nursing home she lived in. My father died a few months later.
While people with ME/CFS, Long COVID, fibromyalgia, Chronic Lyme, and other debilitating chronic illnesses suffer immensely, a second wave of suffering arises when their family caregivers feel overwhelmed and exhausted. There are several factors why this happens:
1. It’s tough to find all the necessary info & resources to be effective caregivers.
- It’s hard to find doctors who can treat these debilitating chronic illnesses that aren’t well understood.
- There’s no centralized place to find what we need to know about all the different aspects of caregiving (healthcare, emotional, financial, legal, etc).
- These illnesses are complex and involve multiple systems in the body.
- There is no cure, and there’s a huge range of treatments to explore to address symptoms. Some treatments work for some people but don’t work for others, and we don’t know why.
2. Caregivers have trouble with self-care and face burnout.
- We need to take on new roles as caregivers and patient advocates, usually with no training. For example, we need to learn about the intricacies of working with health insurance companies, multiple specialty doctors’ offices, pharmacies, and more. Many of us also need to learn about disability (e.g. applying for Social Security disability benefits, buying a wheelchair, and retrofitting a house).
- We often take on the emotional & mental burden of finding answers on behalf of our loved ones who are too sick to do much on their own. We typically feel that we need to be the emotionally strong ones since we’re the healthy ones in our families.
- In many cases, we need to take on more household responsibilities that were once shared with the family member who’s now too sick to cover these chores.
- There’s grief for the loss of the life you had imagined for your loved one, yourself, and your entire family. There’s also grief when you’re unable to do what you’d like to do because of caregiving responsibilities and required lifestyle changes.
3. We’re lonely and isolated.
- It’s hard for others to truly understand. Sometimes friends and family aren’t sensitive to the extreme lifestyle changes we’ve needed to make. In some cases, relatives question the validity of the illness and friends disappear.
To help address these issues, in 2019 I founded a support group for ME/CFS partner caregivers, a spinoff from a support group for all caregivers of loved ones with ME/CFS hosted by #MEAction volunteers. Over the past year, caregivers of people with Long COVID are also joining our monthly video conference meetups. Participants say they look forward to our meetings, where they feel heard, understood, and supported by fellow caregivers. They feel less isolated and get actionable advice from others who face the same challenges. “It’s a bright spot for my entire month,” one caregiver has said.
To extend support beyond the monthly caregiver support group meetings, in 2023 I launched Caregiver Wisdom, an online venture that focuses on the needs of caregivers of people with debilitating chronic illnesses. Along with other family caregivers, we offer expert advice, trustworthy resources, and community connection.
Why launch Caregiver Wisdom? I’m not a doctor or medical researcher, so I don’t have the skills to help solve and cure people with ME/CFS, Long COVID, and other debilitating chronic illnesses. But I can contribute to our overall community by sharing caregiving lessons I’ve learned over the past decade from my own challenging life experiences, reading stacks of books, watching countless webinars (including many fantastic MassME events that I greatly appreciate), listening to dozens of podcasts, working with three coaches, three therapists, and my mentor who’s a Zen priest, as well as talking with other chronic illness caregivers who have become my good friends and support network.
I’ve started creating a guide map to become a resilient and joyful caregiver, to help others navigate the challenging chronic illness caregiver journey. The journey has many ups and downs, twists and turns, and you often lose sight of the path because it’s so gnarly. It’s easy to feel lost, lonely, overwhelmed, unsure, demoralized, and depressed.
Like a journey traversing through mountains, parts of the trip can be tough and treacherous. There are also moments of beauty, joy, and personal growth if you’re present enough to see them. It’s helpful to follow a map through this rugged wilderness. And going on this difficult journey is easier with the good company of fellow travelers.