Carrie Jackson lives in Evanston, IL, where she works in long term care.  She is a Certified Dementia Practitioner, and has been a writer and a caregiver for most of her life.  Visit her at CarrieJacksonWrites.com

I was studying in England when my mom was diagnosed with Parkinson’s disease in the spring of 2000.  It was terrifying to be 4000 miles away, and not be able to go to her doctor appointments, talk to her friends, or give her a hug.  She was surrounded by love and support, however, and quickly was able to put together a treatment plan that included acupuncture, yoga, exercise, and medication.  When I came back that summer much of the hard work had been done.  Although I was glad she was in a good place, part of me wished I had been able to take a more active role in the process. 

Fast forward 14 years, and my mom still is doing fairly well.  She lives by herself, has good friends and neighbors, participates in a Parkinson’s dance group and started a Parkinson’s singing group.  She gets the groceries delivered, doesn’t drive, and wears an ID necklace with my contact information on it.  And still I worry.  She lives half a mile away from me, and I am the only family member in the area.  Now the caregiving role is all mine.  She is fiercely independent, for better or for worse.  I want her to be able to do everything for herself, by herself, but that’s not always practical.  I go with her to doctor appointments, in part because I want to know what they say but in part because I want to make sure she is giving them accurate information.  Is she telling them she has been shuffling her feet more?  Did she mention the fall last week?  That she can’t remember her closest friends’ names? 

One of my biggest concerns right now is her “white outs.”  We don’t know what causes them, but she gets dizzy and faint.  It probably has something to do with blood pressure, sensitivity to light, fatigue.  We don’t know.  She’s had every test done.  She has fallen in department stores, her acupuncturist’s office, restaurants, and in her apartment.  They come on without warning.  This terrifies me, but I have to support her and let her continue to live her life as fully as possible.  To ask her not to go for walks alone, not to go out on a sunny day, not to do her favorite things, would be way too limiting.  And it’s not my place.  So we go to yoga class together.  On the mat next to me, she has trouble pushing up to Cobra pose and starts to shake.  The teacher comes over to offer an adjustment.  Afterwards she goes up to the teacher and thanks her.  “I have Parkinson’s, so I can’t do everything, but I try” she says.  And I am so proud of her in that moment for being so strong, emotionally and physically.  And then I help her put her coat on. 

When we are out together, I see how much of her daily life has to be adjusted because of Parkinson’s and I wish I could make it go away.  At the grocery store, it takes 30 seconds to get her credit card out of her wallet and the ignorant people behind us start so get antsy.  Sometimes I help her, sometimes I let her do it herself.  I know she would get her shoes on a lot faster if I helped her but she wants to do it by herself.  She wants to open the tomato sauce by herself and will only take my help after she has tried four times.  Eating out is sometimes difficult, in part because she has trouble cutting the food and in part because her voice is so soft I can barely hear her.  But we enjoy it, so still make a point to go out a few times a month. 

I can’t make her better, and that greatly saddens me.  It’s so hard to watch somebody you love struggle and know you can’t do anything about it.  I want to support her, but I also want to protect her.  I don’t always know where that balance lies.  I want for her to be able to make her own decisions, but I also need to use my voice when I disagree with them.  Selling the car was a big issue, but it was really necessary and she has a whole list of people who will drive her places, myself included.  In the coming years, there will be many more adjustments and big decisions.  I don’t know if I will ever be “ready” for those, but I will do my very best to address them with her from a place of love and concern.  And hopefully she will be able to put her trust in me. 

Posted: 12/8/2014 6:48:36 AM by Cathy Whitlock


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