Jump to content
  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Caregiver: Rose's story


Editor's note:  Below is a story submitted by a member for our site.  If you would like to share your story of the caregiving experience, please email webmaster@dinet.org


Rose's Story

I have been a caregiver and I have had caregiving for myself.  The experience from both sides has required effective communication. 

When I was younger, my mom developed crippling Rheumatoid Arthritis and terminal lung cancer.  I was the closest to my mom both emotionally and physically so it was a natural fit for my role as caregiver to grow with her illness and her need for help.  My mother was a fiercely proud and independent woman.  She was ahead of her time when it came to teaching herself how to use power tools and to build and fix things around our house.  Growing up in the 60's, women her age still wore dresses in public, never pants, and men still took care of the "heavy" work.  My mother wore her dresses alright, but I remember her doing that while she swung a sledgehammer and took down a wall in an upstair's bedroom.  So when she started to lose the use of her hands and have trouble walking, she was angry.  She skipped all the other parts of adjusting to chronic illness and stuck herself on the anger step and wouldn't let go.  Her independence, pride and now anger, made her a very difficult patient to care for.  She was angry at herself when she needed help and angry with me for offering it.  My patience and empathy were tried on a daily basis. I'm not proud looking back on this, but I have to admit that there were times when I would yell at her for being so ungrateful and even threaten her from time to time that I would leave if she really didn't want my help.  I was hurt that no matter what I did, she seemed not to like it.  I'd work all day to cook a meal I knew she loved and she would refuse to eat more than a bite when suppertime came.  I started to really resent her attitude, the amount of work I had to do, and above all, the terrible treatment I felt she was giving me without any good reason.  

After a particularly bad day together, my mom's friend stopped by to see her and could see that I was on the edge of tears.  I explained to her what was going on and what I was feeling.  After about 15 minutes of listening to me complain, she spoke up.  She asked why I was doing this and I said: "she's my mom".  She said "so?  You do have a sister?  She has sisters herself?  There are options.  So, why are YOU doing this?"  I said "I love her.  She's my best friend and I want her to feel good. I want our relationship to be like it was"  She said "So does she but that's impossible isn't it?  She's not the same and can't be to you what she was before.  She needs you to help her find her way to live in this body - the one she has now.  You keep trying to "help her" by trying to find ways for her to do what she did before.  Maybe if you tried to help her find ways to do new things that she CAN do, she would be happier.  She would have some independence again."  I was stunned because I had no idea I was doing that until she said it to me.

From that day until the day my mom died, we did things differently.  We adjusted as we needed to and realigned activities as we went.  Instead of my spending the day cooking her favorite meal and placing it in front of her.  We cooked together. I handled the knives or the things that required dexterity that she didn't have, but I gave the other things that she could still do.  I bought her a high stool so she could reach the sink again comfortably.  My mom's other passion was gardening.  So instead of doing the gardens for her.  I started bringing her outside and getting her comfortable at the potting bench.  She did all the potting.  She prepped all the bulbs.  She was happy again because she felt useful, she had pride in her work and she had independence.  We went from my caring for her to our caring for each other again. 

When I became ill 25 years later and required caregivers of my own on and off.  I sat my husband and my daughter down and told them this story.  We are able to skip the angry days (mostly) and bad temperament  They are able to help me in the ways I really needed help.  And we are able to care for each other the way a family should.

I hope my story can help patients find the ways to communicate to their caregivers what will help them most and I hope it will help caregivers find the ways to listen and be able to help each patient adjust to their new life.                                           


User Feedback

Recommended Comments

There are no comments to display.

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Add a comment...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...