The Sweet Burden of Caregiving ~ inspired by Lesley @ “Under My Wing” blog

I just read Lesley Austin’s thoughtful, beautiful post about respite at her blog, Under My Wing, and was so inspired by her phrase “sweet burden”, describing caregiving.

You know when there’s a torrent of words and feelings you can’t capture to communicate to others and it feels exhausting to try?  I’m not very verbally eloquent, especially on the spot ~ a recurrent feeling throughout my life.  That’s why I write.  

And that’s how I felt the other day when I ran into an old friend at the grocery store and we were doing the oh-so- awkward trying to catch up in 6 minutes routine in front of the banana display.  As soon as I mentioned that my mom was in the state she is, I could see him pulling back with pity.  Not unkindly, but guarding himself and putting up a psychic boundary against the further details he was already visualizing – probably because we’re not close anymore, and he knew he couldn’t help.  All entirely sensible under the circumstances of what he was probably imagining.

I wanted to stop him right then and rewind, wanted to yell “wait, stop, you have the wrong story – it’s not the one you’re thinking!”   But I got frozen like I usually do when I feel people putting my experience with Mom in a compartment of their head, slowing the conversation to a creep, not realizing how many variations there are besides the plight of the woeful caregiver.  I had a mouthful of words that wouldn’t fall out of my mouth in any pattern that would be intelligible, so I didn’t even try to explain.  

Very unlikely I’ll ever see him again; not worth it, maybe, were some of the thoughts running through my head. 

But my old friend is a good person, a thoughtful man, a writer/thinking/poet, and though I hadn’t seen him for 10 years and may not ever again, he was a “heart” friend, and I felt we were both cheated in that glossed over exchange that didn’t do anyone justice (him or me or Mom), and I felt just a little emptier than I had before. 

How to communicate the riches of dementia caregiving?  ….the crazy huge world between life and death where you fall into the rabbit hole to a dimension that you didn’t even know existed.  Where a minute of time moves eons slower than the hour hand… and your worst nightmeres turn into poems and acceptance and just enough space to take another breath…  

None of us ask for this experience, but for me, it’s endlessly rich in a way that only perhaps music without words or silence or a heavenly piece of art can get anywhere close to expressing.  

Sadness, while always hanging around the corner, is only one aspect of this wild life that never turns out to be what you expected.  For me, that’s true almost every day I see Mom.

But thanks to you, Lesley, if I ever see Isaac or any other stranger from my past again and start to feel frozen in those pity headlights, I’ll be empowered by your words.  I’ll say that my life with Mom in the crazy right now is a sweet burden.  And I think anyone with the least bit of emotional intelligence will GET it.

 

 

About these ads
This entry was posted in dementia. Bookmark the permalink.

5 Responses to The Sweet Burden of Caregiving ~ inspired by Lesley @ “Under My Wing” blog

  1. Hi there,
    Loved your post. How true that caregiving is shot through with both grief and grace. There is the day-to-day grind and the grief of losing who your mother used to be. And then, out of nowhere, you get gifts. I remember when my mother was in so much pain about 2 years ago and I stayed with her to keep her stable until she could go to the hospital to get her pain meds safely adjusted. Evenings were the best. I would lay beside her in bed and read poetry or the Bible to her. And, usually, after each poem or Psalm she would say softly, “that was beautiful,” and for a moment the pain had moved away and I felt closer to the mother she used to be. Something in her tone, and the way she said those words, “that was beautiful,” gave me more satisfaction that I expected. And, you’re right, it can be so hard to explain the gifts of caregiving to those who aren’t doing it.

    Angela

  2. Megan says:

    Thanks Angela. “Grief and Grace,” as you put it, is another fantastic way to sum up this experience without needing to explain too much. I love listening to the different ways you eloquent bloggers phrase the unfathomable to others.

    Megan

  3. I loved and related to this post. I get exhausted and frustrated caring for my mom, have even snaped at her more than once, but all I truely feel so blessed to have this opportunity to care for her. I feel like we have grow closer than ever before. She makes me a better person.
    I also get that, “You poor thing,” from other people when they find out I am taking care of my mom.
    I also have loss a couple of friends, they seem to not to be around her. Not much of a real friend after all. I do have 3 friends that are just wonderful and agree with how blessed I am. They also interact with my mom like she does not have demetia and are extra loving to her.
    I just discovered your blog, so glad I did. I got a wordpress.com blog that I should have my first post in a couple of days, week at the most. The name of the blog is Being Moms Memory. Hope you will stop bye.
    Thanks again,
    Teresq

  4. Reading this, Meg, I am just grateful that anything I wrote added a little something to this journey we are on. And thankful to my sister-in-law for using those descriptive words in an email a few years ago. They perfectly describe what I am feeling these days, and are quiet in the same way my feelings are right now.

    It’s funny, your journey seems so much more tumultuous than mine right now with the place you and your mom are in and the mix of personalities and all that goes into this…but I am over and over again so glad for the connections we make through these words on the screen.

    xo

    Lesley

  5. momsbrain says:

    What I thought as I was reading this is a selfish thought. There are many people in my life who regularly ask how Mom is. But still, virtually no one asks me how I am in the context of Mom. Really, nobody does. To this day, that hurts me. Even though caregiving is also often a sweet experience for me, too, I am always surprised that people don’t realize I want to talk about myself sometimes. Then again, that would probably jack up the discomfort for the other person to a whole new level.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s