It has been a few years since I embarked on the soul-searching, circuitous road of primary caregiver. From that moment on, all of my energy, time and patience snowballed into one enormous goal-taking care of the woman who gave me the best years of her life.
I began this task earnestly, armed with a lifetime of tools under my belt. I had been a geriatric social worker for several years, and surely that professional experience would pave the way, right? I was a mother of four amazing children-which no doubt would be of great benefit too. But unlike caregiving for our kids, looking after an aging, ill parent does not offer hope of a better tomorrow-and sometimes, with certain forms of dementia, many of their yesterdays are stolen forever.
| There were some good days, some bad, and many which are now, frankly, a bit of a blur |
My mother, suffering from middle-stage dementia, post-triple heart bypass and a host of other devastating diagnoses, had settled into our home along with her familiar, comforting bedroom furniture and surrounding family. There were some good days, some bad, and many which are now, frankly, a bit of a blur.
Health crises, doctor's visits, additional hospitalizations and a few prayers later, I was faced with another life-changing decision. Reflection and critical, painfully honest self-examination led me to choose, once again, the most logical path to take next.
However, love is anything but logical; mother-daughter relationships tend to be highly emotional and laden with punctuations of guilt, biased perspectives and unfinished business. Ours was fraught with all of the above.
Four years had passed since I searched those deep, reflective, all-knowing eyes for the mother to whom I once turned for knowledge, sincerity and the key to a myriad of life's mysteries. However, the answer to this next enormous challenge lay within me, ripened and ready to be plucked from the depths of my being.
Last spring I came to a fork in that well-traveled road, and made the difficult but necessary decision to move my mother to a nearby facility where she would be provided with the twenty-four hour nursing care she requires. Our cottage-style home, with its stairway leading to her bedroom, was no longer safe for those eyes which now suffered from macular degeneration, another one of those diseases which has mercilessly robbed my mother of the few precious resources she still possessed.
This Holocaust survivor, this warrior who beat the odds so many times during her lifetime, had now won the disease lottery. One ailment after another invaded her once remarkably youthful, healthy, active body.
Since she was on a waiting list for a facility, notice of an available room was brief and nonnegotiable. After a year on hold, the phone call-both dreaded and yet oddly, shockingly relieving-had come. She would be required to move in the next day.
My body and mind went through a labyrinth of "what ifs" and "maybes"; the sun set that evening and rose the next day, forcing me to move forward. My mother was due to be admitted at 10:00 AM. I awoke at 3:30 AM, with familiar twinges of pain wrapping their ugly tentacles around my lower back. Within minutes I was suffering a gut-wrenchingly painful kidney stone attack, which left me breathless and writhing on the floor, eventually ending up in a fetal position.
My husband offered to take me to the hospital, but I knew from past experience that this would be of little help, as I am allergic to the artillery of painkillers available there. My mother had taught me how to survive the toughest times; this humble heroine had been widowed when my brother and I were just kids, and she suffered through isolation, financial hardship and a lifetime of challenges without ever giving up. So no drama. I toughed it out for four hours, arose from my crumpled position, dusted myself off and got ready to move my mother to her new home.
This was not an easy task. The guilt was overpowering and almost won, especially when I looked into those beautiful, loving eyes, those eyes which belonged to the one woman in the entire world who has always been there for me, who knew me inside and out.
How could I possibly move her out of my home where she had sought solace and peace? I knew the answer and fought through my tears, weaving in and out between denial and reality like an out-of-control vehicle. I had come to the end of this journey; at times, my mother's behavior was aggressive and difficult to manage. She required constant supervision, and her eyesight was failing more rapidly. My husband and I were awaiting the birth of our first grandson, as our daughter was about to deliver any day now. Surely G-d had orchestrated this complicated scenario for a reason?
| How could I possibly move her out of my home where she had sought solace and peace? |
One of our sons and his wife were expecting as well, and living with us. My health had deteriorated over the four years my mother had resided in our home. There were many reasons why this was the right time.
Nevertheless, I had lived in denial for so long. I once mistakenly believed that I could do it all. Now I was falling apart, bit by bit; devoting my entire energy to my mother was exhausting and more depleting every day. There was nothing left to offer anyone else, including myself.
I needed to continue being the best caregiver I could be, but from a different perspective, from a bit more distance. She would reside only a five-minute drive away, allowing me to be helpful to her as well as to the rest of my family, including my husband of over three decades, who had been so patient but who needed me too before I fell apart completely. Yes, I was rationalizing. But it was the only way I could survive-my last hope of remaining intact so that I could help the ones that I loved.
Our first grandson was born a few days following my mother's admission to her new dwelling. Over the next few months I was able to assist our daughter and son-in-law when needed; our next little bundle was born five and a half months later to our son and daughter-in-law. Now I could help my mom and children with renewed energy and enthusiasm.
My dear mother's mind has become more obscure. She is calmer now, but lives in limbo between our world and her fog, not confused enough to forget everything, yet not sufficiently lucid to remember what she did ten minutes ago. Her recollection of her life prior to the dementia is as dim as her failing vision. However, my mother clearly communicates how losing so much of her memory is not the way she wanted to live the last years of her life. Our hearts are one as we hug each other. There are no words for this kind of pain.
My beloved mother now mixes Hungarian and English as she desperately searches for her once mile-a-minute repertoire of words, yet she managed to eloquently phrase her thoughts a few weeks ago. "I have no clear picture of who I am," she murmured quietly during one of my brother's recent visits. It was a poignant, tortured admission, emerging from a fragmented yet still philosophical mind. Those words, coming from my once intellectual, brilliant mother, haunt me every single day.
The good part is that our visits are loving and quiet; we hold hands while I answer the same questions over and over, now with more patience and kindness than ever before, because I have handed over the primary caregiving reins to the amazing nursing staff at my mother's facility. I now have the wherewithal to deal with anything she needs me for.
Surprisingly enough, I was able to handle this change of power fairly easily, perhaps because I was exhausted and ready, combined with the knowledge that my mother would be safe there and would receive the medical attention she required on a twenty-four-hour basis.
She has adjusted to her new environment as she has dealt with every new challenge during her lifetime, with incredible courage, strength and quiet dignity.
That being said, I am still tearful before and after every visit, and I continue to suffer from guilt feelings. I'm trying my best, but I still struggle.
I'm getting there, albeit slowly. Previously, I had awakened every morning torturing myself with thoughts like "Why can't I make this disease go away? How can I stand by powerlessly and allow my mother's mind to be taken from her, bit by anguished bit?"
I experienced all the different stages of loss. In fact I've jumped from one end of that spectrum to the other and right back again, finally arriving at the realization that I am powerless to cure her-that I did everything I could to keep her strong and relatively healthy for as long as humanly possible.
| I tell my mother that I love her every time I see her |
This is G-d's plan. I must strive to be the best person I can, honor my mother by continuing the life she wanted me to live, and accept what I cannot change.
There is one scenario which remains constant, despite all the devastating changes in her life. I tell my mother that I love her every time I see her; I remind her that I will always be here for her. She flashes me that familiar smile I remember from childhood, gazes lovingly into my eyes and whispers, "I know." Then she tops it off by declaring that she absolutely "adores" me. I cling to her generous gift, to the warmth of her soothing embrace, and pray that I can remain as strong as her life lessons taught me to be.
In the meantime my dear mother, this noble conqueror of life's many battles, drifts helplessly throughout her haze of random yet hauntingly recognizable thoughts of her past. She desperately clings to her profound feelings of love, where our worlds intersect and are bonded through our undying devotion to each other. In this world of uncertainties, one thing I know for sure. Our souls are eternal. They will be connected forever.
By Catherine Roozman Weigensberg 
