How to be a Caregiver for Someone Battling Lyme Disease

So, your loved one has just been diagnosed with Lyme disease. After the shock wears off, hopefully you ask yourself how to be a caregiver for someone battling Lyme disease. Admittedly, when I was diagnosed, it never crossed my mind how difficult it would be for my husband (who was my boyfriend when my battle began). When I started this blog I promised that it would be a community, not only for Lyme warriors, but also for the angels who walk the journey with them. Your role on this path of seeking wellness is often overlooked. I’d like to offer a few tips on how best to assist your loved one in their battle for health.

Obviously, I was the sick one, so my advice comes second-hand. I know what was helpful for me and what wasn’t. Of course, we are all different and heal in unique ways. What worked for me may be annoying for your loved one. My goal is to offer general guidelines, not specificity. It will be up to you to communicate with your brother, girlfriend, daughter or father and see what they need specifically. My battle against Lyme disease was the hardest thing I’ve ever done. I couldn’t have done it without the constant support of my husband. If you’re reading this and you’re the warrior without live-in help, I hope you’ll reach out and find a support system. My goal isn’t to scare you but the truth is, you’re going to need it.

Patience

You will notice that I begin and end my short list of advice with Patience. That is not by accident. If you only hear this part, and it’s the only thing you provide your loved one, you will be a godsend to them. Depending on how long your loved one went undiagnosed, this could be a very long battle. I would prepare for the worst case scenario but hope for the best. Accepting that you have very little control over how long it will take to reach remission is a great place to start. I battled Lyme disease for two-and-a-half years and then I worked with a therapist for another year for chronic PTSD. Patience is the name of the game.

Research/Attendee

Perhaps the best advice my Lyme-literate doctor offered on day one was that my husband attend each of my appointments with me. This was for a few reasons:

1. To help me track my symptoms. There were times during my battle when I was too out of it to recognize certain things as symptoms. I would also downplay certain symptoms and he would give his account of symptoms as he was seeing them, instead of through my foggy-brain recollection. He would remember and report to my doctor for me.
2. To help me remember advice, medicine dosing, herx reactions to be aware of, etc. that my doctor discussed with us during my bi-monthly appointments.

My husband also became my researcher. This was especially helpful once I started treatment. As the medicine was doing its job my brain became incapable of reading or retaining information. So Will took over for me. One of the most frustrating things about battling Lyme disease is the obscurity of information regarding the true nature of the battle. Will helped me by researching all of the crazy things that were happening to my body. Knowledge is power and a light shining into the darkness.

He also researched for himself, to better equip for the struggles that arose. I encourage you to do the same. The knowledge he gained by reading gave him comfort and made him feel empowered. Lyme disease will do crazy things to your loved ones body…you can prepare for some of that by being in the know. The list of Lyme disease symptoms is vast, along with the list of co-infections and their symptoms. Read, read and read some more.

Diet

During my first appointment, which marked the beginning of my treatment, my doctor recommended that I follow the paleo diet. I immediately bristled at this suggestion and knew that it would be a challenge for me. Perhaps the most angelic thing my husband did was faithfully adhering to the Paleo diet alongside me. He went grocery shopping with me and helped me find alternatives to food items I wasn’t supposed to eat. He encouraged me when I collapsed like a child crying because all I wanted was pasta or bread. He took the time to research why certain foods were discouraged and explained it to me. Of course, he wasn’t overly harsh or strict with me. He just wanted what was best for me and guided me when I was weak.

Shoulder to cry on

I think this one speaks for itself. Your loved one will be scared, feel lonely and be filled with dread on any one day, sometimes all at once. They will need you to be there to soak up the tears when it all feels too overwhelming. You are their support system and they will need you more than they’ve ever needed you before. Offer compassion, patience and love. When you need a break, or to vent, that is totally understandable. Find a good friend, go out for coffee or a cocktail once a month, or once a week, and let off some steam. This will be difficult for you too. Don’t forget to take care of yourself as well.

Patience

As promised, I’m ending my short list of advice with Patience. I can only imagine how hard it was for my husband watching me suffer every day. I’m sure the same will be true for you. The best thing you can do for your loved one is offer patience. It may be helpful to know at the offset that there will be many ups and downs. As one medication starts working and clearing out its intended bacterial infection, certain symptoms will begin to clear up. However, new ones will likely appear…and this will happen over and over again. Be patient.

Your loved will likely be on numerous medications and sometimes it may be tempting to question whether it’s too much. Trust your doctor and be patient. The medicine is working, however slowly it may seem to you. Remember too, that while this is painful for you to watch, it is even more painful for your Lyme warrior. Patience my dear ones. It will serve you and your loved one well.

This will end. Remain constant and steadfast for your loved one

My husband and I had been dating for about five years when I was diagnosed with Lyme disease. One of my biggest fears during the hardest part of my battle was that he would leave me. Lyme disease has robbed many relationships and left them scattered. I am forever grateful, and fortunate, that we didn’t become a statistic. He stood by me as my biggest advocate and a faithful caregiver for this Lyme warrior. When we began this battle together we had no idea what Lyme disease was or how incredibly difficult the road to wellness would be. It was only due to patience, research, comfort and guidance that we made it through the journey.

If you’re a Lyme warrior reading this and you don’t have a live-in support system, I hope you’ll reach out and ask for help. It doesn’t make you weak to admit that you need help. It makes you smart. If that simply isn’t an option for you, please reach out and find a support group. There are many Facebook groups, online forums and peer mentor programs. You don’t have to go this alone.