The Choice to Suffer

Many years ago, I took care of an old man with Alzheimer’s.

For over six months, I fed him, gave him his showers, dressed him, kept him company, wiped his butt, took him for walks.

Fended his ‘crazy’ spurts – like when he tried to hit me all the way out of the house, then locked me out and was laughing maniacally through the window (oh yes. Ha. Ha. Ha. ).

the old man

I took care of him because in the initial interview, I took to his wife – I really liked her. With dark circles under her eyes, she was completely overwhelmed, struggling to care for him 24/7.

But man…. the love she showed her husband! The tender way she looked at him! He had no idea who she was but still. She didn’t skip a beat. I wanted to help her. So I joined ship.

his wife

That period taught me a lot, you know. I was in such a raw state in my own life and self that I could not bear to be touched.

But this old man could sometimes only be soothed by my holding his hand. I’d have to hold his hand and get to this place of stillness inside myself and let that energy come across…and only then would he quiet whatever agitation might have stirred up.

But somehow in that all, he taught me how to hold hands. He taught me how to open up to other people again from a trusting heart space.

****

I’d watch him for hours as he gazed outside.

He saw things that I didn’t. I wondered what they were.

the old man, looking out the window
I’d wonder if his glasses were magical, that through them he could view other worlds. I’d wonder at the workings of his mind. The path of emotion that he walked upon.
You could say he was suffering, but while I’ll never know for certain, I don’t think it would be true. He looked just fine to me. His mind was almost gone to another place, that is true, but for the most part, he seemed happy and healthy.
The people that really could have been suffering in this were his family. His many children. His bright wife. But to suffer or not was their choice and they chose to not.

They consciously chose to take his Alzheimer’s in stride and learn and grow as a familial unit. Bond ever-tighter. To request help when they needed it (enter me), but to form a net of pure love and catch this man who meant so much to them.

 Alzheimer’s was a tragedy in that it took this man, while alive, from his family.
It was a gift in that it allowed them an opportunity to grow – in spirit, as a family – that they may not have had otherwise. Who knows? But they saw it that way, they took it that way and let me tell you: it had some results. They were lovely people.
****
 Now my daughter has an extra chromosome.
A lot of people like to say that she’s afflicted, that she’s suffering from the Down syndrome. I don’t know if she is. She doesn’t seem like she is.

 But what do I know? Maybe this is the face of “suffering” and “affliction“?

I like to think that she’s a maverick spirit that wanted to experience the world from a different perspective.
I like to think that she’s pushing me to understand unconditional love.
This little girl will never fit into a box; any box. The very nature of Down syndrome means that you don’t know what is going to happen.
I need to love her as she is. In this very moment. With the future as it unfolds, however that may be. 
I think this is worth learning. And so I thank my lucky stars that this person is in my life.
my little Maverick. In front of the big painting of the Old Man, looking out into his garden through his magic glass and seeing his young self out there
(originally posted on April 9, 2011)
Meriah
is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
She likes her coffee black and hot.
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18 Comments

  • Beautiful post. I feel the same way about Miss K. Honestly, the only time she is "suffering" is when she wants to sleep and the fans at our sons' baseball games are too loud and wake her. LOL And, by the way, LOVE Moxie's blue and yellow hair bows!

  • So well said. If I have read this a year ago I wouldn't have gotten it. I just wasn't in a place to. It is so nice to be able to read it today and relish such a great description. Thanks.

  • That was beautiful and such a great perspective. Did you do this work before kids? I love the idea that we have the choice to pull together as a family and grow from our experiences, no matter what they are. Are you a painter too??? Those are stunning!

      • That's incredible! And I didn't even notice the last painting until now. You never mentioned being an artist! That could be a beautiful book — with the words and the pictures. You could really open up a different way of seeing dementia. Or it could be part of an art show.

        There is so much here, so much that is really valuable and important. This could be a great way of teaching children and youth about dementia. It could also give family caregivers a sense of empowerment. And it's just a beautiful story about loss and difference, but about the humanity that ties us together. I loved that you held his hand. Just loved it. That's what I did the night my dad was dying. Touch is everything.

        Have you ever thought about sharing it with organizations that work with people with Alzheimer's??

          • I am ITCHING to paint them!! It’s really, really, really hard to paint with them so little though. To be honest, that’s the main reason why I blog – blogging is easier to do as an outlet than painting when kids are little.

        • Yes, it means a lot to me. I have all the paintings – they are HUGE, like room-sized. I would love to give them to an organization that works with people with Alzheimer’s. Thanks for reminding me to do that… *must* do.

  • You have such a beautiful spirit and I couldn't agree with you more! My daughter is liberated in many ways because she is outside the box right from the get go and there is no hiding it. I love that about her and feel such pride in her.

    Those paintings are incredible!

    And Moxie is so darn cute with all of that spunk!

  • Lovely post.  Life really is what we make it, isn't it?  We can choose to suffer or embrace.  It's all in our attitude.   Your little one is awesome!  Did you paint those paintings?  They're awesome too!  

  • I love the whole room artwork! Amazingly creative with such stories behind them. Everytime
    See you daughters little face I want to squish her cheeks! She is so cute! Bron

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