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Caring For A Child With Spinocerebellar Ataxia

Gina Flores
Caregiver Advocate | Shield HealthCare
04/26/12  6:41 PM PST

Caregiver Story Spotlight | Shield HealthCare “What Makes Caregiving Rewarding?” Story Contest

Story by Gretchen V.

It’s tough to be a caregiver, BUT it’s tougher for the one to be cared for! My daughter, Robin is severely disabled with a degenerative disorder called Spinocerebellar ataxia (SCA). I have watched her decline for many years and have personally cared for her for 10 years. She can no longer care for herself. She has lost all of her motor skills, is blind, cannot use the bathroom and at times, is not coherent.

I know all of the requirements of a caregiver. We must be patient, kind, flexible, energetic, compassionate, happy and have many talents. When I start feeling over-worked and frustrated, I think about Robin; how hard it must be knowing that she can no longer see, no longer walk, no longer feed herself, no longer put on make-up or comb her hair, cannot go to the bathroom by herself and so many other things that we take for granted. I also remind myself of all the disabled people in this world who have no one to love, care for them or give them some kind of security.

The rewarding part of this commitment to Robin is that I know that I have done everything in my power and ability to love her, keep her safe, comfort her and provide a sense of security.

I want to extend a special THANK YOU to Shield HealthCare for providing special caregiving products in such a speedy manner. Also, thank all the people in the “order taking” department for being so helpful and patient. I never feel rushed or treated like I am a bother to them. They are always knowledgeable and recommend products for our needs. Thank you.

Comments

1 Comment

  1. Terri
    Posted May 5, 2012 at 3:01 am PST

    I have cared for my husband for many years before he lost the fight to this disease. I know what you are going through and applaud you for your commitment and compassion to your daughter. He is a hero as are you and your daughter. God Bless!

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