The following is reprinted with permission from the Spring/Summer 2017 Vol 1, Issue 1 publication of The Journal of Crisis Prevention, ©2017 CPI.
This journal goes out to our 30,000-and-counting Certified Instructors as part of their membership.
Rosemary’s Face: The Legacy of Rh Hemolytic Disease
by Becky Benishek
The ICU was quieter than I’d expected.
A thawing Saturday afternoon shone mutely through the third-floor windows. My husband and I walked slowly down the wide corridors, keeping pace with my mother-in-law’s footsteps that faltered behind her walker. We were on our way to see her younger sister.
Her sister, Rosemary, was born with the Rh (rhesus) hemolytic disease factor in 1934. To the best of my knowledge, we all (with the rare exception) have a blood type we’re used to seeing: O, A, B, AB, and also an Rh factor, which is either positive or negative. An Rh factor problem occurs when the mother’s Rh factor is negative and the baby’s is positive, as inherited from the father.
The good news is that an Rh factor problem is preventable and treatable—now. But in the early 1930s, this wasn’t the case.
Rosemary has lived her entire life with the brain of a six-, maybe an eight-month old. It’s interesting, looking at someone who has grown into old age, but has remained unmarked by the world.
Your hair still turns white, but you have few lines.
Your face appears unscathed by trauma or care.
Even on a breathing tube, you seem docile and comfortable, and passive. I contrasted Rosemary’s tranquil demeanor with the faces of other ICU patients I’d visited who were fighting for their lives.
My mother-in-law’s sister doesn’t know her. In the 1930s, children with Rh disease were taken care of in state facilities, often moved around as funding changed.
Rosemary used to be in a facility close to where my parents-in-law raised their family, but later she was moved a couple counties away into what was called a “cottage.”
My mother-in-law used to visit more often, but it broke her heart each time, because Rosemary never remembered her. Rosemary didn’t know she even had a sister. She didn’t know she had other visitors. She didn’t comprehend that she’d be visited again, and by the same person.
So life went on, as things do. My parents-in-law raised their three sons, had their jobs, were cabinet members of the American Legion, lived well beyond their 50th wedding anniversary, and always lived in the same Milwaukee house; while some things changed outside their front door, some things stayed the same.
After my father-in-law died at the beginning of 2016, my mother-in-law started to speak with relief about finally moving to an assisted care facility. I hope we can make that happen for her.
Rosemary remained thought of, a wistful, shadowy form that floated alongside their lives. From all accounts, she was content. The only times we’d hear from her nurse would be a phone call letting us know, per state edict, whenever Rosemary had a stubbed toe or a similar incident, things that in ordinary life require no such alert.
“These children were never supposed to live past age twenty,” a nurse told us. “Yet so many of them are still living into old age.”
Here in the ICU, Rosemary’s private room had a chair she’d never use, a television she couldn’t watch, and that morning’s newspaper, which she couldn’t read. She lay half-turned on her right side, eyes tightly shut, her face a milder, broader version of my mother-in-law’s. An array of diagnostic equipment surrounded her bed, yet you would think she was sleeping naturally, about to wake, were it not for the breathing tube in her mouth.
My mother-in-law pushed aside her walker and tottered over to the bed.
“Rosemary,” was all she said, brokenly, holding her sister’s hand, stroking her lovely pale-white hair that lay against the pillow. “Rosemary.”
Rosemary’s foot shifted beneath the blankets.
“Why won’t she wake up?” my mother-in-law asked, her voice full of pain.
“The nurses said she hasn’t woken up for a while,” my husband said.
“But keep talking to her and putting your hand on hers,” I said. “She feels a comforting presence; she’s aware at some level of your love.”
To my husband, I added, “And it will help your mom, too.”
This was the first time I’d seen Rosemary. As my mother-in-law gave what comfort she could, it seemed that Rosemary relaxed, almost imperceptibly, even further.
I’ve learned over the years that the power of touch and a soothing presence are felt, even if the patient doesn’t know you and if they are unresponsive and can’t give what you long for—that answering pressure, that acknowledgment that yes, you’re helping, and yes, they feel your love.
I was born with the Rh factor, the second child in my family. The doctor caught it in time, and I was delivered a couple weeks early, and spent time in an incubator for jaundice. I was so upset, my mom said, that I wasn’t with her, that I was raising my head to look for her.
My mom has always said that despite all this, she knew I was going to be okay.
I would have been Rosemary had it been a different time with different care.
“Rosie,” my mother-in-law was saying now, over and over. “Rosie.”
My husband recalled seeing a picture of his mom from her childhood. There were two children in the picture, two girls, one younger, sitting on the lawn in a long-ago, faded summer. The older girl looked very much like she was taking care of the younger one.
Rosemary was at home before they fully realized something was wrong, before her parents decided to give her the best care possible at that time, even though it meant moving her away from her family.
She was at home long enough for her sister to form a lifelong, lasting bond with her, even though Rosemary would not seem to remember this bond herself.
She was at home long enough to get her nickname, “Rosie,” the kind of cherished thing families—or older sisters—give.
My husband walked over to the wide window that looked out onto the other areas of the hospital and down onto the tree-lined residential streets beyond.
“She would have probably gotten married, had kids, and the kids and I would have grown up together,” he said. “I would have had cousins I would have been close to.”
He paused. “I feel like I was robbed of having an aunt.”
A nurse came in to see if we had questions.
“She never knew who I was,” my mother-in-law said. And she burst into tears.
As we comforted her, the nurse told us that Rosemary would be here in the ICU until she could breathe on her own. She’d already been there for two days. So far, she had been unable to breathe without the tube. That is, in fact, why we were called in the first place, to see her and perhaps say our good-byes while we still could.
We didn’t need to worry, the nurse continued, divining correctly my mother-in-law’s latent fear, that they would remove the tube and let her die unless we, the family, decided to evoke a do-not-resuscitate (DNR) order.
Rosemary could stay here indefinitely.
And there’s the crux.
This is such a divisive issue even when it isn’t affecting you directly. Who dictates what quality of life truly means for each person? Who are we to decide that breathing through a tube isn’t good enough?
We know as family members that this isn’t a life we would have chosen for ourselves. But if it’s the life you’ve got . . . what then?
I knew then, as my mother-in-law was drying her tears, that no such decision would be made that day. What Rosemary would receive was everything she had always had: Compassion. Person-centered care. Love.
And what we’d receive in return was the continued gift of her innocence, her face unmarred by time and, hopefully, pain. And the sisterhood my mother-in-law craved and found in bits and pieces throughout the years.
In the end, it’s what we can give that counts the most: The best quality of life possible.
QUALITY OF LIFE AND PERSON-CENTERED CARE
Through working at the Crisis Prevention Institute and with Dementia Care Specialists, I’ve learned so much about the cornerstones that drive our mission to provide the best standards of care:
- Quality of life.
- Person-centered care.
- Focusing on what someone can still do, not what they no longer can do.
- Person first.
Kim Warchol, the president and founder of Dementia Care Specialists, believes that we can help persons with Alzheimer’s and related dementia flourish at every stage of the disease. Indeed, we can do this with any cognitive disability, such as the one Rosemary has lived with all her life. It takes reframing, though. It takes seeing ability, not disability. It also takes courage, because currently this world is not set up to easily accommodate the differently-abled.
It’s also essential that we should meet that person in their own world instead of trying to drag them into ours. I use that term deliberately, for all too often we try to correct someone who must exist in their own reality, just so we can be more comfortable in their presence, or find it easier to take care of them.
Kim relates this important piece of information:
“The most common comment I get back from families is, ‘I didn’t know my loved one still had that capacity, and I didn’t know that we still had that potential to have a good relationship.’ When a person with dementia starts changing, and starts losing abilities, if we’re told to only look at the losses, families lose hope that there’s any opportunity to still have a meaningful relationship with this person, because they’re different. So the most predominant feeling families share back with us is, they’re still here. . .I just need to adjust and change.”
The face and body someone has doesn’t even begin to show what lies beneath. That smile you see on a nonverbal person’s face when you play a piece of music—that’s real. That response or movement you witness when you lay a hand on a person huddled up in medicated sleep—that’s real.
It’s not easy to recognize that there is still a person inside, if they can’t communicate with us in ways that we’re accustomed to.
That’s why it’s essential to remember to manage and modify our care to maximize someone’s quality of life, just as we need to remember that all behavior is communication, and it’s up to us to learn how to listen.
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