Doctor, Why Does It Hurt When I Do This?


When you love someone with dementia, it feels like your life is eroding piece by piece.  I don’t mean the daily grind of caring for them, the slip and slide beneath your feet as the ground you thought was solid turns to slurry.  I’m talking about the past you share with that person, all the little interactions through the years that make up your relationship with them.  As they begin to forget those moments (a precursor to forgetting you), it’s hard not to feel that your own history is vanishing into that grey fog.

I first noticed this phenomena about twenty years ago.  I was newly divorced and had traveled from where I lived in Pittsburgh to my parents’ home in upstate New York.  I was a woman in need to comfort and the feel of the familiar.  I needed to lick my wounds and get on with life.  I was standing in the kitchen talking with my folks when the topic of Christmas cookies came up.  One of the great memories of my life is making Christmas cookies with my mom.  She would mix and roll out and cut the dough into shapes and it was my task to decorate the cookies before they went into the oven.  I took the job very seriously and worked hard on each cookie, making it just so.  Didn’t matter to me that in a few days there would be nothing left but crumbs.  I loved making those little pieces of art with egg-white “paste” and candies and (my favorite) egg-yolk “paints” in blue, red, green, and yellow that I applied with little brushes.

I suggested to my Mom that we do up a batch of butter cookies like in the old days.  She was up for it until I mentioned the egg paints.  Her expression went blank.  She had no idea what I was talking about.  I explained (over and over) but she had no memory of those paints.  No memory, in fact, of ever having made those cookies with me.  A major portion of my childhood, erased just like that.  Snap!  (Okay, so, yes, I realize that those memories aren’t really gone if I can remember them, but do you see what I mean?)

Since my mom came to live with us, I try to stimulate her brain with things I know she’s enjoyed in the past.  Sometimes it works, others times not.  Tonight was a not.  We sat down to watch the original “How the Grinch Stole Christmas.”  This has long been a favorite of my mom’s, ever since it first was televised in 1966.  When it was over, I turned to her and said, “What did you think?”  She said, “I’ve never seen it before.”  I felt my heart squeeze in a funny little way.  (Not funny ha-ha.)  “Did you like it?” I asked.  She shrugged.  “Eh, it was okay.”

So much of what I’m experiencing emotionally is my own fault.  I know she’ll never be the same again, never be the mom I knew, but I keep hoping to retain (at least for a time) bits of her.  And it just isn’t happening.  And, of course, it can’t happen.  It won’t.  Logically I know that.  Still…I want her to be happy.  I want to bring some joy into her life while she can still experience joy, but since she doesn’t experience joy in the same way anymore (at least I don’t believe she does), I’m not sure what to do.  Christmas used to be a time she loved (despite my father’s decidedly Scrooge-like ways).  She waited all year to watch “Miracle on 34th Street,” and “Grinch” and the Alastair Sim version of “Scrooge.”  Now they mean nothing to her.  This year she seemed entertained by “Miracle” (the original), but had no recall of ever having seen it before.  Likewise “Scrooge” (although she had a clear memory that it wasn’t the version she’d seen as a child — that was the Reginald Owen version, never her favorite…until now).

I think her decline is gaining speed.  I should be grateful for that on some level I suppose, but this is the hardest damn thing to watch, like standing at a distance while someone you love is consumed (in slow motion) by an avalanche.  You are powerless to stop it, powerless to make a damn bit of difference, to slay the monster.  You can only stand there and watch.

And it hurts.

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About Melissa Crandall

Longer ago than I care to admit--although I will--I cut my writing teeth on fanzines and media tie-in novels. Since then, I've moved on to narrative nonfiction, speculative fiction, and essays. I write to explore and understand the world around me, the things I see and experience nearby or from a distance. If I shake myself up, cool. If I shake you up, even better. Not gratuitously--what's the point in that?--but to set what I know, or think I know, on end and realize, "Well, doesn't it look different from this side!" My work is neither sexually explicit nor graphically violent. Let's face it - your imaginations will come up with things far worse than anything I could write, no matter how descriptive. Besides, it's just not my thing. I live in Connecticut with my supportive husband Ed, a cat named Ruby who might just think she's a dog, and an epileptic Australian shepherd named Holly who isn't quite certain anymore who she is, except she knows she loves her mommy.
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12 Responses to Doctor, Why Does It Hurt When I Do This?

  1. Lizzie says:

    Hi Melissa,
    I stumbled upon your blog this evening as I searched the net for info about therapeutic riding programs for adults with dementia. I take care of both my parents – they were both diagnosed in 2010. I just want to thank you for sharing your stories – I found a friend in your posts and the profound loneliness that accompanies this journey felt eased in the knowing that there are others going through this and that, despite our lack of contact with each other, we are community.

    • Hi Lizzie! Welcome and thanks for leaving a message. Good luck finding a therapeutic program for your folks. Might I recommend the PATH website – http://www.pathintl.org/
      PATH used to be NARHA (North American Riding for the Handicapped Association) and they have all sorts of wonderful information. You also might look for a facility that will enable your folks to do ground work, i.e., grooming and horse care. I just signed my mom up for a six-week course here in CT. She loves horses more than anything, and while she’d much prefer to ride, this gives her some quality horse time WITH SOMEONE OTHER THAN ME (important) while we wait to see if riding in future is a possibility. Where are you located?
      My heart goes out to you and I am sending you a virtual HUG! I know how hard it is to handle one parent; I can’t imagine handling two with dementia. (My dad passed last year at age 94, but his was a physical deterioration, not mental.)
      Thank you for the wonderful compliments. I’m so happy to have helped ease that loneliness that comes with this journey, even if only for a little while. It IS isolating, isn’t it? Even if you have some help, lots of help, any help….you can’t help but feel it’s you and them. We ARE community. If you haven’t found a local Alzheimer’s support group, I encourage you to do so. You’re not alone.

    • Lizzie, I don’t know if you’ve subscribed to the blog or not, but wanted you to know that I am starting it up again…brought about by your message as well as that from a fellow named Jack who served as caretaker for his mom. As the prevalence of Alzheimer’s grows, we all need to hang together. I hope you’ll stay in touch.

      • Lizzie says:

        I absolutely will keep in touch Melissa!

        My mom has never really spent time around horses so I’m definitely looking into programs that enable ground work. I often liken her to a wild animal – she’s only 62 years old and a fireball of energy, plus her verbal communication has degenerated so much that I wonder how she might benefit from the kinesthetic and intuitive language shared with another very alive being (horse). I’ll let you know how it goes. Thank you for the links!

        Currently, we live outside of Philadelphia. My partner and I hope to one day bring my parents back to Vermont where we’d been residing prior to relocating as caregivers, but my siblings are local to this community so we’ll see…

        I will treasure your blog posts as they come and look forward to sharing some of my own experiences in turn.

        My sister and I keep a sporadic mini-blog on WordPress (Don’t Be Bashful). She initiated it as a dwelling for our fonder memories and inspirations, thus much of my heavy writing lives tucked away. Perhaps your more raw storytelling will inspire it free.

        Thank you for the hug! It’s so wonderful to have connected.

        Lizzie

      • I, too, am glad we’ve connected. That’s what this is all about, in my opinion. And the sense of relief to know you’re not alone, that there are other people out there who “get it” and understand why you’re losing your mind on a daily basis, is…freeing, in its way.
        I wish you luck in finding a facility able to provide your mom with equine therapy of whatever sort. Last week was our first session and I had 40 minutes of freedom that I totally didn’t know what to do with! It was so odd….I discovered I no longer have the ability to just sit and be. I was disturbing to not have something to do, some way to occupy myself, to keep busy so the rest of the world can’t intrude. Really underscored my need to find some stress relief. Maybe I ought to go groom too!

  2. Jack Harris says:

    My mom passed away after a long struggle dementia and reading you article I felt every feeling all over again. You are such a terrific writer. God bless you. Jack.

    • Oh, Jack, thank you so much – both for writing and for the compliment! I wish I could give you a hug for enduring what you did with your mom. It’s so difficult to watch, isn’t it, and you feel there’s so little you can do. I have just joined an Alzheimer’s support group and am taking a 4 week course (one night each week) on the illness to “try” and prepare myself for what lays ahead. I am seriously considering doing a blog just on that (which is sort of what this blog was turning into, not intentionally). I’ll keep you posted if I do (assuming its something you’d want to keep reading). God bless.

    • Hi Jack. Just wanted to let you know that I’ve decided to start up the blog again…chiefly due to your message and one from a woman named Lizzie who is serving as caretaker for BOTH her parents. Oi! I hope you’ll stay in touch.

  3. Linda McGee-Grimes says:

    Oh my dear Melissa, I feel for you as you watch your mother stuggle, BUT….YOU still remember those blessed sweet moments, those wonderful memories are still with YOU even though she has lost them. What if you never had those moments, those memories. What if you never got to bake cookies or watch shows or any of the other things we cherish about our moms growing up, which I didn’t. I envy you, that even though your not able to share you can still hold on to what meant so much to you, that you had the chance to do those things, and I guess, remember for her. Life without memories is empty and lonely, you can see that everyday, feel blessed you can remember those cherished times with your dear mom.

  4. I can only imagine how hard all this must be for you but I do understand about losing all those childhood memories. After my Mum passed away, and even more so since my only surviving aunt died, I feel very sad that there is no-one left who shares my childhood memories. It makes me feel quite lonely at times.

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