Being on Both Sides of the Fence- A Speech & Language Pathologist’s Point of View as Therapist Turned Family Member

June 17, 2016

“Mom” is a word that holds many meanings, same to all but different to everyone. When I think of what “Mom” means to me, I am flooded with thoughts of the following: Mom is my livelihood, my world, and my everything. Mom is my companion, my friend, and my role model. Mom is my past experience, my fixed presence, and my measure of womanhood. Mom is comfort. Mom is nurture and protection. Mom is beautiful. Mom is strength. Most of all, Mom is happiness, Mom is motivation, and Mom is life. When looking back on my life, Mom was all I needed. Mom was pride. Mom was determination, energy, and personality. Mom smiled, kissed and cuddled every chance she could. Mom epitomized all that was pure and kind in this world. No matter the day, no matter the circumstance, Mom did it all; Mom was all. Mom was love and selflessness. Mom prioritized her family and put us first. Mom had no expectation for anything in return. Mom just wanted to LOVE and be LOVED. I’ve always aspired to be all that Mom was and has become.

As human beings, we are infinitely faced with growth and change. And, in the face of challenge, we have tendencies to feel invincible. We have all said to ourselves at some point in time, “this will never happen to me.” Call it denial, call it ignorance, call it self-preservation, or call it will. Whatever we call it, there comes a time in all of our lives that we realize it can, it will and it does. This is not pessimism but reality. This is our one common ground; we are all creatures of circumstance. We will all need something and someone to be there when we are sick, to help us do the things we can no longer do and/or to do the things that we love to do but now struggle to do. Life is unpredictable.

On some idealistic level, I believed my parents to be invincible. Together, they had an amazing ability to uphold a very healthy, active lifestyle, to make themselves available at any moment in time, and to challenge themselves for proof that they could do it all, no matter the hand dealt.

I will forever replay in my mind a week back in February of 2014. Mom suddenly fell ill coming down with what seemed to be a harmless “cold” but one that wasn’t typical for her. She became very weak and sleeping often. Doctor’s visits revealed what was shockingly high cholesterol and hyperthyroidism. Mom was given medicine, and sent home. She was understandably frightened and emotionally distraught from these diagnoses given the seemingly excellent health she had been in prior and the devastation of feeling like she is “getting older.” To make matters worse, Mom was so saddened that she had to cancel daycare for my son that week that she otherwise provided regularly. Not only did she feel sick, but now she was unable to care for her grandson, her pride and joy, and that was horrible for her to succumb to. A few days past and Mom got the rest she needed. Then, after about a week, she regained her strength. Mom asserted that she was feeling better and was able to resume daycare for my son with the help of my father, if needed. I agreed having relief that she was well again and could now spend much desired time with my son once again.

The night before I was to drop my son off at her house before work, I got a phone call from Mom during what I thought was an inopportune time of the night due to the woes of winding down from dinner, getting my son ready for bed, and cleaning up the house. I picked up the phone and its Mom…again! (Love talking to Mom, but the everyday phone call was sometimes difficult to entertain on a busy day). In a droning voice, I greeted Mom then asked her if we can TALK tomorrow instead. Mom said “OK,” in that understanding, gentle voice that she always had. We hung up. No big deal, right?  Another day and another phone call. There will be others.

Well, tomorrow came, which turned out to be a day of no return, a day that had changed our lives forever. That morning, just as I was pulling into the driveway to drop off my son, my father found Mom unresponsive on the floor. I suddenly had to do the unthinkable, call an ambulance for Mom, report right-sided paralysis, and assess Mom for alertness and comprehension. No drama, no crying, hold it together, get the job done, help Mom. It turned out that those symptoms of a “cold” were nothing of the sort. Mom had suffered a left middle cerebral artery stroke that left her paretic on the right side with a severe Apraxia of Speech, a motor speech disorder leaving Mom incapable of talking. As a Speech and Language Pathologist, I was now faced with what I consider the worst nightmare imaginable, my nemesis, Apraxia. Shear irony and fear washed over me. Mom, the one that had cared for me through all of my years, now has to live as if locked in a cage for the rest of her life, as she can no longer speak. Mom can no longer say my name, or say “I love you” or tell me “it will be OK.”  I immediately thought back to last night’s conversation and realized that my words, “Can I TALK to you tomorrow?” will never come again…at least not in the way it should, not in the way I needed it to, not in the way Mom deserves. I felt death of the Mom I’ve always known. I wanted to hear just one word, any word, please!

How could the doctors have missed this? Could this have been prevented? What is the reason for this? At this point, who cares? What’s done is done. Invincible we are not. Here we are with our new reality and we are going to do what we have to do.

The course of action was obvious. Helen Hayes Hospital was the only choice for getting Mom back. My colleagues immediately rallied around me and a plan of action was set into motion. Mom arrived and the “real” work could finally begin. This was also the first time I let my emotions loose as I was able to breathe once again. I literally felt breath and peace return to my body just knowing that this weight was now lifted off of my shoulders, and I could finally put my trust in the only medical/rehabilitation team that will do right by Mom.

In the initial stages of rehabilitation, Mom’s recovery was questionable given the altered motivational drive, mood and inattention that can occur from such a brain injury. Mom, however, quickly regained herself, and she proved what she was made of. Mom was still strong and determined, just as I knew her to be, and exercised every moment expected of her with no complaints. My father was also by her side every single, solitary day, from start to end of visiting hours, making certain not to leave his wife. Physical therapy helped Mom walk again and offered us strategies to carry-over at home in order to maximize her potential with guidance and patience. Constant concern was always expressed, and her safety was accounted for daily as if she was their own. Occupational therapy challenged Mom’s arm and hand in order to recover awareness to that neglected and paretic side, to prevent disuse, and to restore movement and function again. Multimodality interventions were carefully selected. Self-regulatory skills were always encouraged. Speech Therapy pushed Mom through utterly draining, tedious, and repetitive motor speech, language, swallow and oromotor exercises. They elicited what I thought was dead forever and freed Mom from that cage. Mom had her voice back, and could once again talk to her children and her husband. Mom was now saying my name, saying her grandson’s name, and telling us she loved us, words so beautiful to hear again. Time was even taken to teach Mom to speak pet names she had for us and videotape her many other speech productions, which was very special to me.

Outpatient Occupational and Speech Therapy followed, which had the grueling task of surfacing those skills that Mom had potential for but required a significant amount of prompting to readily access. Outpatient therapy advocated for Mom’s recovery as long as it took and they invested their hearts into every minute of her rehabilitation, which speech therapy outpatient services, specifically, continues to provide today. The medical/rehabilitation team collectively did whatever was necessary to make Mom a whole person again, and I am forever grateful.

Mom returned home, with the support of my father, and was able to resume her full life. She continues to greatly struggle with speaking and it is heartbreaking to witness, but thanks to Speech Therapy, she has a wider repertoire of utterances allowing her to now exchange in at least basic conversation. Today, she is still a strong, determined, loving, and vivacious woman; one that I deeply admire. She still kisses and cuddles her family as often as she could. Sure, there are many differences between what I call my “other” Mom and my “new” Mom, and I still grieve what feels like a death in many ways, but I am unbelievably fortunate to have Mom and HHH gave her back to me.

When we open ourselves up to silver linings from traumatic events, it becomes easy to find the meaning in it all. I have learned, not only from being a therapist but now a family member of a patient, that Helen Hayes Hospital is “Mom” to so many, in a time when everything feels lost, to offer nurture and strength and priority when we need it the most.  I am so very proud and appreciative to be a part of this special place. What does Mom mean to you?

-Tara da Rosa, M.S., CCC-SLP
Speech and Language Pathologist