Living with Lyme (Part 5): The Caregivers

Posted:  Tuesday, October 24, 2017 - 7:45am

“No one told me that this was going to be difficult. I never fathomed that our primary care doctor would not be able to properly diagnose and treat him. Some days I wish her battle would just end because I hate seeing her suffer so much. We had no idea just how complex this was or how far its reach was. Every part of our life has been greatly affected by this awful disease.”

These are just a few comments shared with me by family members charged with the care of their loved ones. As I sat talking with these caregivers, one thing became very apparent to me: they didn’t ask for this anymore than their chronically ill loved one had and yet the despair and hopeless feeling that encompassed these interviews was very heavy. They were taking on the guilt and responsibility for something that was not theirs to take on. But as with any chronic illness, those in the inner circle are greatly affected one way or another. What saddened me the most was how many talked about family and friends that walked away, leaving them to bear the brunt of this.

If it’s something that we all understand, we can rally around it and support it. But when we don’t understand it, the support is just not there. That is until we are touched by it personally.

The caregivers of chronically ill patients with a tick-borne disease go through many phases. The initial visit to the doctor to figure out what is wrong. Finding out tests are normal but seeing their loved ones are still sick. Thinking if they just give it time they will get better but this is quickly followed by where denying is no longer an option. They feel helpless. Watching their loved one become more debilitated without any direction to find additional help. It’s a very tough situation to find yourself in. It brings out the worst in people where they lash out in fear at providers for not doing their job. They begin to question themselves: What did they do wrong? Did they wait too long? Did they overlook something? And while the caregivers are trying to wrap their heads around an ever-growing complex disease that even doctors don’t fully understand, they watch in fear and anger as their loved one’s health declines right before their very eyes and there is absolutely nothing they can do.

“Devastating, heartbreaking, confusing discouraging. I watched my life partner, once so vibrant, outgoing and full of life, decline in every way. No longer able to leave the house, very moody from the constant pain, withdrawing from communications. As a parent, you want to protect your child and I was not able to do that. Nothing I offered brought comfort to them. I never knew what to expect from day to day so I treaded very carefully. Sometimes even the slightest gesture was met with rage.”

“Ongoing visits to medical providers were frustrating. We knew something was very wrong and we were not being listened to. We had to be tolerant of what we didn’t understand because the care of our loved one depended on it. But once we understood, we didn’t like it, not one bit. I mean, how can tick-borne disease be so divided among medical providers? How can one say that they are sick and another say not? How can one treat and then say, “give it time” when another says, “longer treatment is needed because they are still sick” and yet another says, “they are no longer sick but repair work needs to be done before they feel better?” One patient, many opinions fighting against one another ~ its disturbing. But who are we to question them? We’re not doctors.”

Sound advice from the caregivers ~ “No matter the disease that your loved one is battling, the toll it takes on the family is great. You become their entire world. It’s important for caregivers to etch out time to do something for themselves and not feel guilty. To balance out time to spend with other family members, including other children. You need rest and nourishment yourself to be able to offer to others.”

If you are a caregiver of someone suffering from a tick-borne disease and you need help or want to talk, please contact me.

Paula is the president of the MLDSE, the Maine-partner of the national Lyme Disease Association, a member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at