Julie’s Caregiver Story


July 25, 2023

Caregiver Story

I was lucky enough to be my Moms caregiver for the last 16 months of her life. I moved in with her while my generous husband kept care of our home without me. She had Myasthenia Gravis and was losing her ability to care for herself in her home. As much as she resisted my moving in with her, once it happened, it was the most wonderful 16 months of our lives.

We watched tv, ate meals together, I got to listen to stories I had heard before and ones I had never heard before about her childhood, my grandparents, and my dad. We laughed till we cried, grabbing our stomachs from the pain of laughter! Those were the fun times, but the best was every night before I went to bed, she would still be up watching tv in her room. As I would cut through her room to say goodnight, we would tell each other we loved the other. Most nights, she would add how much she appreciated that I was there for her. I was so blessed to have these interactions and discussions with Mom. I am such a lucky woman!

Mom died in her home of a heart attack, having her favorite carry out lunch with her friend of 50 yrs, while talking about their great-grandchildren. She always wanted to die in her home and that’s what she did! I was blessed with that as she took away the responsibility of me having to make decisions to find a care home for her as things would have become increasingly difficult as her Myasthenia Gravis would have required bodily lifting her in and out of bed, etc. I miss Mom tremendously, but I knew I was loved. I have memories to last my lifetime, and I have so many stories to pass down to my own children and grandchildren. I am blessed.

How did you become a caregiver?
It was a decision my husband and I made for the care of my Mom.

How has your relationship with the person(s) you care for changed? If so, how?
Even though we were close and had a great relationship, we became so much closer as Mother and daughter.

What is the hardest thing about being a caregiver?
Losing the time you had to care for yourself. You know you are at their beck and call all hours of the day and night.

What is the most rewarding thing about being a caregiver?
What I learned about the person I cared for and how our relationship grew.

What advice would you give to other caregivers?
Find someone to relieve you at least an hour a day.

In ten words or less, what has caregiving taught you?
It was worth every moment, good and bad.

Describe a successful caregiver challenge that you met and how?
I needed a break at least once a week so I could go home to see my husband. I would call on her friends to come visit and stay for a few hours on specific days when Mom was in good spirits.

We want to hear your story! Why? Because your story matters. Have you ever listened to someone talk about their life and thought ‘Oh, someone else has been through that, too? I thought it was just me!’ Every story shared is a chance to aid another caregiver and help them feel less alone.

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We hope this information is helpful to you in the important work you do as a family caregiver.
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