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What’s your life really like?

Really, day to day, nothing to write home about. I am blessed that my husband requires only a small amount of care during the day and my job is close by. So I can run home at lunch and feed/toilet him if necessary. Then back to work, where people complain about their husband not being good enough for one reason or another and I just want to smack them.

Friday comes and I have begun to measure that time so that some of it is satisfying to both of us, not just him. That was a huge step for me since most of the time I was worried about entertaining him during all of my spare time. This is the quickest way to experience burn out.

Now I take lessons, I plan adult activities for myself, etc. So in that respect things are better. Since the stroke in ’09, he has learned to repeat a few phrases but still remains unable to communicate anything but essential needs.

What’s keeping you up at night?

Mostly the need to communicate with someone, anyone, anywhere, about anything. I’ve tried a multitude of different avenues. Most are disappointing to say the least.

I plan to not be alone someday, but there is no way of knowing when that will be. Until then I live with a person who barely resembles the man I was once in love with. Instead I see a person who needs me more than I have enough energy to serve. But everyday I do, and every night I wonder how much longer or will I die before him from exhaustion.

What are you really proud of right now?

Right now I am really really proud that we are mostly out of debt. I’m proud of my children and my grandchildren and that we have for the most part, a good relationship. I’m proud that I can know that I am doing what I am supposed to be doing no matter how stressful or how discouraged I become.

What keeps you going when you feel like giving up?

Humor, Humor, Humor. I love standup comedy, I love to hang out with funny people who can help me laugh at all the problems and even laugh at myself.

Music, as much as possible. I retreat into songs that have deep meaning and that were written during times of sadness but speak of better times to come.

Reading about people who contributed greatly to society against all odds.

Monster movies.

Ultimately I pray and ask for forgiveness and for a heart of thankfulness. Both of which I have been given abundantly

Written by Guest Author
The Caregiver Space accepts contributions from experts for The Caregiver's Toolbox and provides a platform for all caregivers in Caregiver Stories. Please read our author guidelines for more information and use our contact form to submit guest articles.

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2 Comments

  1. I have read a lot of these comments and I feel lucky. My Mom has Lewey Body dementia because of Parkinson’s. My Mom still can take care of herself. She forgets things sometimes and her personality is snippy at times which isn’t her, she doesn’t like to leave the house and doesn’t like when I do. But I can still give her hugs and tell her I love her every day. So I am blessed. When I begin to feel like I am “trapped”. I give her a hug and realize I am lucky to have her with me still and go and give her a hug. Try it sometime. It will make you both feel better.

    Reply
  2. I was there until 4yrs ago

    Reply

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