Previously published on The Next Good Thing.
Over the past several years, my mom’s dementia has been slowly progressing. While her mind has been fading, her body has remained fairly stable, until this past autumn when she was having a lot of difficulty walking. We visited doctors, bought her a walker, administered pain medications, and got her in-home care, but didn’t see any improvements. An X-ray during what we thought was a routine visit with her rheumatologist revealed that the top of her femoral bone had completely disintegrated, and she was immediately sent to the Emergency Room. The ensuing hours in the ER were my first foray into figuring out how to “read” my mom’s pain levels and learning how to advocate for her in a medical setting.
If I could write myself a letter to prepare me 24 hours in advance for my mom’s recent emergency room experience, this is what I’d say.
Dearest Karla,
You don’t know this yet, but you’re about to share a small but significant moment with your mom and your husband, Chad. It’s going to feel like death and undoing, but will be a sign of green, growing life and wholeness.
At your mom’s routine rheumatology appointment at HSC tomorrow, an x-ray will show that the top of your mom’s femoral bone has disintegrated, and her specialist will immediately have her transferred over to Emergency to be admitted. You’ll be in a wee bit of a daze, having to change gears on a dime, but your ever-ready default of “Let’s DO This” will see you through.
Your mom won’t be allowed to move, so this stunned and efficient energy will also help you take on the bed-pan and diaper duties that will very unexpectedly be thrust upon you. You and your mama will both be wide-eyed and horrified, but you’ll manage, and practice will make perfect. And over the ensuing 72 hours you’ll get your practice in, dear one, oh yes you will. And you will become so very grateful to the gentle unit assistants who will help you do what needs to be done.
You’ll need to try to remember that things take time, even in Emergency, okay?
The rheumatologist has to talk to the resident and review the x-rays, and the resident has to order blood work and a CT scan to make sure there’s no infection in her hip. He’ll need to find a doctor able to admit her onto their ward, and they’ll need to make a plan of action. You won’t know that this is happening behind the scenes, but it will take thirteen hours.
All you’ll know is that you’re in a room in Emergency, and you’re waiting.
And waiting.
Your mom will be fine for a good while during this waiting period. A nurse will come in at some point and you’ll ask about getting the mama some pain meds because she’s starting to feel quite uncomfortable, and he’ll assure you that he’s on it.
You’ll give him some time.
10 minutes will go by.
20 minutes.
30 minutes.
Things are going to get tricky now, dearest. Up until now you’ve never once seen your mom break down from pain. As you’re more than aware, this is a woman whose pain threshold is through the roof, and even her specialists are amazed when her inflammation markers are ridiculous but she’s doing okay pain-wise. If she ever admits that she’s in pain, you always know to take it seriously because it’s more than legit.
Take a deep breath now, sweetheart.
Ready?
Here we go.
At about the 35-minute mark, your sweet mama is going to start gasping and crying from the pain, and as you smooth her hair away from her face. you’ll reassure her that the meds are coming.
Take note here, honey: you’re going to feel very tempted to distance yourself from the situation right about now, either physically, emotionally, or mentally. You know your tricks. You’ll want to get super logical or efficient and make things happen, or you’ll attempt to distract yourself from the situation by thinking of something else. You’ll be there in body, but not fully in spirit.
Just as you decide to go see what the hold-up is, she’ll clutch your hand as tears flood the wrinkles in her cheeks. Her pleading eyes will be on yours as she whispers through her shudders of distress, “I can’t bear this… I just can’t bear this. Make this stop. Make it stop.”
You’ll nod and turn to lift your anxious, distraught, and tear-filled eyes to Chad’s and you’ll see your own expression mirrored there. He’ll mutter something along the lines of, ‘This is ridiculous”, and he’ll stride purposefully out of the room to hunt down some immediate help.
You’ll continue stroking your mom’s hair, murmuring sounds of comfort, and Chad will return shortly to say that the meds will be right there.
And this is the moment you won’t want to miss, darling,
You’ll inhale and gently push your lips out, starting to form a “shhhhh”, hoping to hush her moans of agony.
A moment before your breath escapes to make the sound, a beautifully benevolent Wisdom will make you pause…
And in that pause…
… you’ll realize that the “shush” is more for your relief than for her comfort.
… you’ll see how desperately you want to make her pain smaller so that your own pain will be less.
… you’ll have a moment of stunning clarity where you’ll see your options before you:
resist this moment of suffering you’re in by creating some emotional distance so you feel less,
Or
soften, soften, soften into this anguish and take it in. Take it all in.
Feel it all. Fully share this moment with her.
Time will seem to stand still.
But in that flicker of an instant, you’ll make your choice.
You’ll halt the shush.
Your still-pursed lips will form a kiss that you’ll gently drop on her forehead like a blessing, and you’ll whisper, “I know. I know. This is hard. This is so hard. I’m here. I’m here with you. You’re almost through the worst. They’ll be right here. You’re doing great. I promise.”
You’ll feed yourself this pain.
You’ll swallow it all down, even though the bitterness of it twists your insides.
You’ll fully take it in, knowing that somehow it will nurture you. *
You’ll feel Chad’s hand on your back, tracing small circles of comfort and companionship. You’ll know that he’s helping you hold your pain, even as you help hold hers, and there will be a small glimmer of solace.
The Love in this moment will be profound, but you’ll only fully realize that afterwards.
And then the nurse will bustle in with the pain meds, and do his thing, and this moment will dissolve into a different, easier moment.
You’ll take a deep breath of gratitude, knowing that your mom’s dementia is a gift here because it means that she will not recollect this episode just a few minutes from now.
But you will remember.
You will carry this memory like a touchstone and will return to it time and again to observe how genuine and true it was.
It will serve as a marker on the invisible map of your courage, revealing that you were able to do something that you wouldn’t—and couldn’t—have done five years ago. You’re in a different heart-space, so you’ll bless the recent difficult years for helping you practice stretching into places you’d rather not be, and to be fully there.
You’ll see that, even in this most fragmented season of your life, you are more complete than you’ve ever been.
And you’ll yield to the bittersweet truth that the things that crack your heart right open are sometimes the things that make you more whole.
With love,
Me
* This idea was adapted from a quotation by Cheryl Strayed in her book Tiny, Beautiful Things
Within the boundaries set by chronic illness, Karla Hildebrandt Kroeker loves spending her available energy enjoying good food, engaging in discussions about life and personal growth, sitting in the sunshine, reading voraciously, watching gentle British crime shows (hello “Midsomer Murders”), and laughing with her husband (who is also managing his own chronic illness—what a fine pair). You can find her at her blog, The Next Good Thing, on Facebook, and on Instagram.
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