A Guide for Our Caregivers

Shari and Mike

If you are a sibling, parent, child, friend, or caregiver to someone dealing with chronic illness, chances are you may ask yourself occasionally — or nonstop — How can I help? As a full-time caregiver to my wife, and also as a person with MdDS, I’ve written this guide which I hope will help you navigate the often challenging and nebulous journey of having MdDS.

Be empathetic.

I had been caregiver to my wife for six years before I developed MdDS. As much as I desperately wanted to understand the severity of her illness and how it was affecting her, I couldn’t… not completely. Sure, I was there in the ways I could think to be, but I couldn’t understand why she remained in bed, why the pain and severe fatigue persevered, why the debilitation continued to progress. And then, out of the blue, the unexpected happened: MdDS hit me. Ending up with a chronic illness myself changed my relationship to her illness drastically. Newly and unwillingly and constantly asea, my entire world was flipped upside down. I no longer knew what she should do to get better. All the ideas I had, the countless articles and books I had read, the hundreds of suggestions people had repeatedly offered me, about ways to “make her better,” vanished in less than a month of my acquiring MdDS. I suddenly understood what it was like to not have any hard and fast answers about what I should do myself to get better. And in understanding this, yet having to somehow continue to be her caregiver, I began to realize some important things about being a truly empathetic caregiver.

Let them know, with actions, that you “have their back.”

In my opinion, the most important role a caregiver can play in the life of one who is ill is to maintain, as best possible, steadfast support of that person’s journey through the illness. This can, of course, go many different directions, and may include any number of roles and tasks, all of which might be subject to change as time passes.

  • Ask how you can help; figuring this out is often a team effort.
  • Be patient. Steadfast support is incredibly meaningful.
  • If not yet diagnosed, do anything you can to help facilitate the process of finding an accurate diagnosis.
  • Understand that many things have likely changed in the blink of an eye for them; nevertheless, it doesn’t mean WHO THEY ARE has changed.

In the case of MdDS, where an accurate diagnosis can often take months or years, a caregiver’s role might be to start out with trying to help the person find a legitimate diagnosis. Before diagnosis, if symptoms suggest the possibility of MdDS or if the person does not know what’s going on, try to keep in mind that their life has changed drastically, and often it’s happened in the blink of an eye. Faculties they once had (cognitive functioning and balance, to name but a couple) are likely suddenly and severely compromised. Do your best to understand; that’s all you can do. That’s all you NEED to do.

The main answers need to come from them.

Until you’ve had a chance to get an accurate diagnosis and to hopefully talk with someone who is familiar with some medications and/or techniques to start out with, try to refrain from offering too many suggestions. However, in my own experience with MdDS, here are some things you can say that will probably be helpful and appreciated.

“Try to get as much rest as you can.”

“I know it will be really hard to do this, but do anything you can to create some calm for yourself.” (perhaps you know them well enough to offer some ideas?)

“I know you want answers, but try to limit the amount of time you spend reading about ‘it’ online.”

It will become evident fairly early on what tasks the affected person will need help with. They are NOT going to want to give up on who they are and the roles they are used to filling, the lives they are used to living. Nevertheless, they will often be forced to give up some things at least temporarily. This is where you step in… not to tell them what to give up, but to “have their back” when they need you. It could be anything, or nothing, depending on how intensely they are affected. In some cases, you will be taking over a great deal of their care; the main thing, though, is to try and let it evolve as it needs to. Being a caregiver is an unfolding journey, and we need to do our best to be patient and allow it all to unfold in time.

Self care is CRUCIAL.

As important as it is that they know you are there for them, you must make sure that you are taking care of yourself. It sounds much easier than it is, though. Being a caregiver can very quickly become overwhelming. It’s very easy to “fall apart” as a caregiver. My idea of “self care” was to push myself as hard as I could, in spite of my own health issues (before MdDS). I exercised an insane amount and filled up my social calendar to the point where nothing more could be added. On top of my already full life being caregiver to my wife, I was even taking care of friends, beyond my capacity to do so. The stress built and built. At the height of it, and during a highly stressful 7-day cruise (that was supposed to be relaxing) is when MdDS kicked in, bestowing on me the most severe health challenge I had known to date. I’ve since developed other health challenges. Would MdDS and these other health challenges not have developed had I been “better” at self care? I don’t know. What I do know is it that you mustn’t let being a caregiver define you. Make time for yourself. If you are feeling stressed or in pain, recognize it as an opportunity to stop and reassess.

Self care is up to each of us to define, as well as refine, as we go along. Other than utilizing our support network as we need, figuring out self care is largely an inner journey. I’m constantly having to tweak my self-care skills, sometimes on a daily basis; it’s rare that it looks the same from day to day.

I hope that, by sharing with you my journey as a “health challenged caregiver,” you are able to find the path that works for you in helping care for your loved one… whether it’s MdDS or another illness they are dealing with.

Mike Nelson, MdDS Warrior since 2011