When You Become the Caregiver, You Must Push Past MS for Love

When You Become the Caregiver, You Must Push Past MS for Love
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I like my husband. I like his generous heart, his humility, and his penchant for Tommy Bahama shorts, T-shirts, and flip-flops. Sure, I love him. Yet our love has changed throughout our 23-year marriage. We have traded passion for patience and lust for loyalty. While each exists, they are no longer that which drives us.

His presence has been my greatest blessing. There are moments neither of us feels that way, but moments are transient. People are not. His choice to witness my life is not one I take for granted. MS is a daily reminder that nothing is guaranteed. People change, and so does their health.

Mine did. So did his.

It was early March when he spoke of symptoms. That afternoon I called his doctor. One day later we sat in the waiting room. He did not want to talk. I watched as he fiddled with the hem of his shorts. I was struck by his vulnerability. This man who so confidently guided me was lost. The fragility of life struck like a gong. I reached and placed my hand over his. At that moment, I vowed to do whatever it took to bring him back.

The stress from his experience ignited an MS exacerbation. I was leveled but so was he. I was in need of both care and a caretaker. He resented needing care. I resented myself for having difficulty providing it. We resented each other. That was enough to pull the pin from the grenade. And our marriage took a direct hit. The hurt was visceral. The fallout left us wounded. We craved the affection we purposely withheld.

It took years to truly own that neither of us was to blame. Logic does not always prevail when emotions are raw. I have always likened MS to a third person in our marriage. That which I would use to nurture my spouse is siphoned elsewhere. This can starve a marriage. A relationship cannot survive on leftovers. We had to learn how to nourish both ourselves and one another.

Six years later and he is well. His physical condition is chronic but manageable. In kind, we are learning to manage our marriage with our respective conditions. We are also learning to manage ourselves. At a time when much is lost, it is crucial to focus on that which remains. I can take it a step further and say that which is gained. I am incapable of sweating the small stuff. So much just does not matter. I gave up trying to make meaning of these trials. I am doing my best to adapt to whatever may come. MS was a dress rehearsal for seeing him through this. What I lack in physical ability I make up for in heart.

He wants to ride to the beach with the top down. My perennial beach boy. I watch him as he drives. I ask God to keep him well. And as I do, I reach out and place my hand over his.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jennifer Powell is a health writer and weekly columnist on Multiple Sclerosis. She is also an active advocate in the MS community. Jennifer imparts her hopeful optimism into real-life challenges facing the MS community. Prior to writing her column, Jennifer freelanced for several online periodicals including WebMD. When not writing, Jennifer enjoys volunteering with animal rescue, traveling and spending time with her Golden Retriever.
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Jennifer Powell is a health writer and weekly columnist on Multiple Sclerosis. She is also an active advocate in the MS community. Jennifer imparts her hopeful optimism into real-life challenges facing the MS community. Prior to writing her column, Jennifer freelanced for several online periodicals including WebMD. When not writing, Jennifer enjoys volunteering with animal rescue, traveling and spending time with her Golden Retriever.
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5 comments

  1. Cynthia says:

    Thank you ,Jennifer,for your openness .My husband and I have been married for 19 years. He was my caretaker for the first 15 and I became his 4 years ago. I am not nearly as good at it as he was.He has had to go to live in a nursing home .
    I understand what you are going through.
    Thanks.I always enjoy your column,it reminds me that I am not alone .

    • Jennifer Powell says:

      Hello Cynthia,

      Thank you for reading my column and writing in response. Having MS makes being a caretaker is emotionally and physically draining. I encourage you to change your narrative about your ability to care for your husband. There are limitations beyond our control which prohibit us from doing things. While we know this logically our hearts ache. Please accept a warm hug from me.

      Warmly,
      Jenn

  2. Adrian says:

    Dear Jennifer:
    Thanks for this . I’ve been diagnosed with MS for > 25 years. I used to be a family physician but because of my MS I had to retire 2 years ago.
    I do feel bad that my wife now has to do many things that she didn’t have to do before.
    I’m taking my meds exercising when I can etc etc.
    But this is a difficult time and I don’t expect ( sadly) its going to get any easier.
    thanks again .

    • Jennifer Powell says:

      Hi Adrian,

      Thank you so much for reading and commenting.

      This disease can take so much from us. Our livelihood, independence and ability to do some things. What it cannot do is rob our spirit. It is humbling to rely on our spouse. It can also elicit feelings of guilt. I try and establish and keep the lines of communication open. Otherwise we start to be snarky. That never ends well!

      This is difficult. It may become more so. But you’re among those who will help you navigate those tougher waters.

      Please don’t hesitate to reach out.

      Warmly,
      Jenn

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