REBLOGGED from Disability Blog
By Guest Blogger Stephanie Torreno, Author of Keeping My Balance: A Memoir of Disability and Determination
I never thought I would need to become an advocate for my mother. All of her life Mom fought for me, her younger daughter with cerebral palsy (CP). From learning to type with my thumb to receiving years and years of physical and speech therapy, I always knew my parents wanted the best for me to help me achieve my potential. When my father died after I graduated high school, Mom became my chief advocate and supporter.
Twenty years later, everything changed following my mother’s stroke. My continuing sense of responsibility to help Mom and to become more independent intensified as her sudden needs reversed our roles. I needed to take care of myself every way I knew how or could figure out. In addition, I had to assist Mom with tasks that she once accomplished easily, but now required my guidance and her intense concentration.
Mom’s weakening condition forced my sister and me to place her in a nursing home a year and a half after her stroke. I assumed the most difficult part of my new life would involve learning how to live independently with the assistance of caregivers. Living alone and making my own decisions soon became easier. My weekly visits with Mom, however, showed me I had the ongoing challenge of making sure she received good care.
As Mom’s abilities continued to decline, I learned to speak up for what she needed. Although I have never allowed my disability to hinder what I want to do, my CP placed me at a disadvantage in advocating for my mother. My inability to drive prevented me from visiting as often or unexpectedly as I would have liked. Nursing home staff failed to listen to my impaired speech, or dismissed my concerns if they bothered to take the time to understand me. Emails to administrators went unanswered or their replies explained policies and procedures that I didn’t see happening. If Mom’s care seemed inadequate when I visited her, I wondered about the quality of care during the many hours I wasn’t with her.
Several months ago, I attended my first care plan meeting in which only one staff member showed up. The woman came unprepared and discussed private concerns with the office door open and, afterward, in the middle of a busy hallway. At a requested second meeting, my sister and I voiced serious complaints and I became emotional describing the care, or the lack of it, I witnessed during my visits. Mom never had fresh water to drink when I arrived. Her face would often have food on it and her hair appeared uncombed. Hours passed before staff took her to the restroom. Pressing the call button for help meant waiting 10 or more minutes until one of the aides came to assist Mom.
One day, I found my panic-stricken mother left alone in the dining room with only a housekeeper cleaning up after lunch. The housekeeper didn’t seem to notice that an aide hadn’t come to take Mom back to her room. Most of these problems stemmed from the lack of staff scheduled to work on the weekends. I learned that additional staff was called in to work after state inspectors made a surprise visit on Super Bowl Sunday.
A few days after the meeting, my sister told me the staff didn’t understand my speech and wanted to know how to better accommodate my needs. This lack of understanding seemed difficult to believe, since many residents have slurred or impaired speech. I felt that they didn’t want to hear or understand what I had to say.
Sitting in on the monthly Family Council Meetings gave me a sense of support and the realization that I wasn’t alone in my complaints. Daughters of other residents listened to my concerns and informed me of other quality of care issues that needed addressing. After one of Mom’s falls, a few of the women told me that they checked on her whenever they visited their mothers.
As adults with disabilities age, more self-advocates like me will find themselves acting on behalf of elderly parents. Speaking up for others, especially loved ones, differs from promoting one’s personal rights and abilities. Advocating for an aging parent requires new knowledge and greater understanding of an individual’s changing needs. Like many sons and daughters with disabilities who live with their parents until they cannot, I feel I am the best advocate for my mother. Although disabilities may make this role reversal more challenging, who better to protect and comfort our parents than those to whom they gave so much?
Recently, my sister and I toured another long-term care facility and thought about moving Mom. While obtaining better care remains a priority, I know the unfamiliarity of a new facility may cause my mother to further decline in health, adding to her current anxiety. We made the decision not to move her, at least for now. I will not stop, however, seeking the quality of care she deserves. Her support in guiding me to become my own best advocate taught me to rely on my abilities and to always seek the best of possibilities.
Stephanie Torreno graduated from Houston Baptist University with a Bachelor of Arts degree in psychology and technical writing. Her work has included numerous online articles exploring education, special education, mental health topics, and supported employment issues. Ms. Torreno published her memoir, Keeping My Balance: A Memoir of Disability and Determination, last year. Her website is stephanietorreno.com.