How to Begin Life as a Multiple Sclerosis Caregiver

Jake Crest Health Guide
  • Normally I write to an audience that knows MS; knows it because they live with it either as caregiver or as victim. But I've read that every hour of every day one more person succumbs to the MonSter. Every hour of every day we caregivers are joined by one more brother or sister in arms. Together we singly fight lonely wars against a jungle fighter of a disease. Skilled in the use of camouflage, our enemy attacks, often without warning, while we scramble to¬† survive until the next remission.

    Welcome to our ranks, soldier. Let me start by saying that you have my condolences, both for the loved one for whom you've accepted responsibility, as well as for the unwelcome change of course your life has taken. I know that your life has not been the same since you both began the rounds of tests that led down the rabbit hole to the by-then-expected diagnosis of Multiple Sclerosis.

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    By now the reality of your situation has begun to take hold. In silence you hear familiar sounds as your old life slips away. On a very basic level you wonder just what it is you should be doing now. You wonder about what life holds in store for you and your charge?

    This is my attempt to provide you with some advice borne from my own experiences. I know that not every one of our situations is the same, but then again, nothing about MS is the same from one person to another. That's part of it's charm. Regardless, we must put that realization aside and push forwards as if our lives still have some semblance of normalcy. In fact, pretending that life is 'normal' in your home is a big part of what you must do -- in the same way that it's a big part of the way that Mandy and I have approached MS in our own home. I'm not saying that you should become delusional. Clearly that's not a good idea.

    Here's the truth as I see it. Once you become a caregiver to someone with MS, life will never again be as it was before the diagnosis. The faster you accept that as fact, the better off you'll be and the quicker you'll be able to move forward with our new goal of pretend normalcy. Whenever Mandy and I start down the road of wondering aloud about what our lives might have been like without MS, one of us will eventually look at the other and utter an oft-heard phrase: "It is what it is."

    Life doesn't come with guarantees. No guarantee of happiness, no guarantee of financial security, no guarantee that you'll have a big happy family, no guarantee of anything -- except for one thing. That your life will be full of unexpected and unexplained events. You can tell yourself that there's some grand plan, that things happen for a reason, but I've dismissed that line of thinking. We've given up all pretense of believing that some master plan simply called for Mandy to contract MS. To me, life is like running across an active battlefield with your eyes open, senses on fire, every ounce of your life's training and experience being pulled into use. With all that going for you, sometimes you're just going to get hit.

  • So, once again, life is what it is. Accept it and learn to work with it. Accept that, unbeknownst to you at the time, you approached a fork in the road of your life. Your plans went one way while you went the other.

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    So what should you do when you find yourself on an unfamiliar road with a good friend who's hurting. I don't know about you, but I grab hold of my friend, hang on tight, protect her when she needs protecting, and together we set out to make a new life for ourselves in what has proven to be a very unfamiliar and, at times, a bit scary world. I advise you to treat your new life as an adventure. Your job as a caregiver is to prepare, as much as possible, for the unexpected. But accept up front that you can not prepare for everything. Just do your best, hang on, and enjoy the ride.

    I hope it's a long one.

Published On: March 27, 2009