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Being principal Caregiver to my mum

Name: Liz Seger
Email: lseger@iaw.on.ca
Date: 03 Jun 2000
Time: 22:49:38
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Terry, I can empathize with your situation. Caring for a parent who has a disability when you are disabled yourself can be both disheartening and yet heart warming at the same time. My Mum developed MS when I was about thirteen, but wasn't formally diagnosed till I was seventeen. Like most teenagers I'd be embarrassed when kids would come up to me at school and say, "Your mother's a lush! My mum saw her weaving down the street at ten in the morning!" Up till that time, my Mum was a vital and energetic woman involved in her community, church, and in my school. Then suddenly, after a wheelbarrow raise at a community picnic, she couldn't get up. She began tripping over lint as my dad used to call it. Doctors told her it was a myriad of things from inner ear to stress. Slowly but surely I saw my mum become less confident in her abilities. She was a shy woman to begin with, but still managed to have many close friends. However, as her illness began to take its toll and she could no longer entertain, her "friends" called less and less. That angered me as a teenager because I saw the person she was, she had not changed in my eyes, she was just doing things albeit slower.

I realized it might be less expensive to stay at home and commute to university, so for my undergraduate degree that's what I did. Mum was still doing the majority of the housework but I began taking over more and more of it, cooking, ironing, doing the dusting, washing the knickknacks as she felt she couldn't rely on her hands. She always remained cheerful and said that she was just like any other piece of porcelain that people used, so she didn't want to be treated as a special piece of Dresden china, something that was easily broken. Because in truth she wasn't easily broken, maybe bent, but never broken.

When my father passed away, Mum, like many MS patients who experience a major trauma, went downhill. She had to become reliant on social workers and visiting nurses to do the simplest things like wash her hair, cut her nails, help her dress if I wasn't around, and help her with her toileting. Always a proud gracious woman, she tried her best to be encouraging and positive to all the help who came in, but she knew and I knew that I did most of the caregiving, and slept at the foot of her bed on an afghan near the end. I cherish those times with my Mum. We had some of the best talks of our lives during her most ill period. Oh yes, there were days when she'd get down or I get impatient, but then one of us would do something stupid and we 'd look at each other and laugh.

We transcended from Mum /Daughter to friends, then woman to woman. I am sure she found it ironic that her visually impaired daughter was now doing the majority of her caregiving and instead of vice versa. I always felt like I was just returning the favour of her caring for me.

True, we were financially able that she could allow me to take ten days off once a year to go somewhere to relax. I'd given up my teaching job and she felt this was the one way she could reimburse me, but I was slowly becoming ill myself and I think at the end, she knew I would no longer be able to care for her, so a week to the day that I got out of hospital for ostomy surgery, mum passed away in the same room, in the same bed I had recently vacated.

In the nine years since her death, I've had numerous friends who have faced having to care for elderly parents who have become ill or incapacitated. The advice I always give them is to know their own limits and accept them. Try to forget you're the child and the one you're caring for is your parent. Treat them with all the compassion you'd reserve for your best friend, your spouse, or a stranger. Enjoy the time you have with them. Listen to their stories, their fears, their ups and downs, because there will come a time when you will long to hear their voice, and all you will have left are those memories you'll cherish in your heart.

Copyright © 2000 Liz Seger. All rights reserved.

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Name: petr
Email: delta@gagmail.com
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Time: 05:50:09
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