Despite MS, I Am a Caregiver

  • Memories of an old Nike advertisement when Charles Barkley proclaimed that he was not a role model got me thinking of something I am not.


    I am not a caregiver.


    I mean, I can't be. After all, I am the one in the wheelchair. The one who no longer stands without help. The one who says repeatedly throughout a typical day, "Would you help me with something?"


    I just don't think of myself in a caregiving role. At least, I never thought of it that way. I imagine there are plenty of us in the MS community who see ourselves the same way; more of a caretaker than a caregiver.


    If you tend to think of yourself in this way, STOP IT. Don't wait until your spouse or care partner gets sick to refocus and start seeing yourself as a caregiver.

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    That's what it took for me. A few weeks ago, Dan got sick. Fortunately, it was only bronchitis (I'm sure he didn't see it that way - only bronchitis). But as he was hacking and sleeping and feeling awful, my role as a caregiver became mandatory.


    I always prepare our meals and do our laundry, but these didn't seem like much, and honestly it seldom felt much like true caregiving. However, when Dan was sick my responsibilities included these jobs and much more. I had to grocery shop for sickness essentials like juice, tissues and Jell-O. There were prescriptions that needed to be picked up at the pharmacy. Sure, I have caregivers during the day who help me to do all of these things - but my caregivers help me, not Dan.


    As Dan's caregiver these jobs were my responsibility; there were two MS-numbed hands and a sore chest that needed to be rubbed, our cat that needed to be fed, dishes to be washed, tissues to be restocked, comforting to do. These may seem routine but they were what he needed. Despite my own limitations, I had to be strong for him.


    I wanted to help him get better and thankfully he did. But I'm better too. His illness gave me an opportunity to see how valuable I really am and what an important role I play.


    I now realize that I also am a caregiver.


    Here is some valuable caregiving advice from the National Family Caregiver's Association:


    • Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.

    • Watch out for signs of depression, and don't delay in getting professional help when you need it.

    • When people offer to help, accept the offer and suggest specific things that they can do.

    • Educate yourself about your loved one's condition and how to communicate effectively with doctors.

    • There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.

    • Trust your instincts. Most of the time they'll lead you in the right direction.

    • Caregivers often do a lot of lifting, pushing and pulling. Be good to your back.

    • Grieve for your losses, and then allow yourself to dream new dreams.

    • Seek support from other caregivers. There is great strength in knowing you are not alone.

    • Stand up for your rights as a caregiver and a citizen.


Published On: April 25, 2012