What No One Says About Taking Care of Senior Parents

A caregiver describes how she adapted to her new reality

Glamaris Valentín Cameron, Mi Gente Grande

Have you noticed how we all know where to buy baby items but few of us know where to get a walker for seniors?

When my father became ill and his attending physician recommended that I buy railings for his bed, he warned me he didn’t know where they were sold and asked me to let him know if I found them, because “I recommend them a lot to my patients.”  I left the appointment in a state of disbelief because, aside from recommending us a hard-to-find item, the doctor confirmed that he did not have a diagnosis for his symptoms and could not help us.  I believe that was the day I became my father’s official caregiver. It was a natural process for which I did not feel ready. Worse yet, I wondered why my friends talked about their children, but few opened up about their parents’ illnesses and aging process.

It is evident that we live in a society that rejects aging. But there was also a lot of denial on my part. For months, I remained in a permanent state of shock. Everything was new, and after Hurricane María, the efforts to get medical appointments and tests became even harder.

Now I know that taking care of seniors is not a tragedy. I also know that every small activity you do with your old folks is as powerful as the newest medical treatment from the prestigious Mayo Clinic.  I also started gradually remembering the moments in my life that introduced me to this beautiful stage. Yes, it is a beautiful experience. I share this with you today as a form of advance warning.

Rebellious Mother

Ever since I was a girl, I noticed that my mother despised doctors. Well, actually, she would say it out loud without remorse. Mom alleged that during her teenage years, she took her grandma to dozens of doctors and hospitals, and then her father, who went blind for some time.  “I’m tired of doctors,” my mother said when she was young, healthy, independent, and full of energy. Although she always taught us preventive medicine, she steered clear of doctors. As a girl, I accepted that my mom knew something that I could not understand. It took me three decades to put myself in her place.

Auntie Haydeé to the Rescue

My aunt, Haydeé Valentín Guerrero, was the total opposite. She lost her husband at a young age, and when her children grew up, she dedicated her energy to helping her family. She took care of her parents, aunts, and uncles on their deathbeds with a pragmatic and positive attitude. She did it with the same energy that she used to redecorate her sisters’ home, start businesses, help neighbors, and make “pasteles.”  I remember hearing the phrase, “She’s the who will bury all of the Guerreros,” at family gatherings, referring to the terminal care she gave to the family seniors, which she happily celebrated. I failed to understand Auntie Haydeé’s loving example.

Uncontrolled Thyroid

My mother kept hating going to medical offices until her aunt was left bedridden, and she took her home to care for her. Mom was barely 50; she was strong and healthy. In a few months, she lost 20 pounds and looked stressed and unraveled. Out of her own volition, she made an appointment with the same internist she took her aunt to see every three months. The legendary Dr. Dilia Díaz held mom’s hands, confirmed that they were shaking, and two minutes into the appointment, she told her, “Are you taking care of your aunt? Your thyroid is all over the place. Now, you must take care of yourself.” I listened to her as she explained the serious diagnosis, and I witnessed the months during which she debated between taking care of her aunt or allowing all the other nieces and nephews to place her in a extended-care facility (which back then were called nursing homes). I remember every detail and the pain mom felt, but I never related this situation to the future of my wonderful and active parents, and even less to myself.

“Call me when it’s your turn to see the doctor”

My parents spent their senior years with a perfectly balanced quality of life.  They exercised, ate well, travelled, socialized with their friends, had preventive care visits with their doctors, and dad would make the occasional warning, “In this house, y’all must save some money for when I kick the bucket.” I never felt like their caregiver. In fact, they helped me with many of my daily chores. However, we started a practice that kept health scares at bay for many years. Whenever my parents had an appointment to ask about a worrisome symptom, I would go with them. We used a foolproof plan: my parents would go in their car and wait long hours in the doctor’s waiting room. Then, they called me at work when there were only two people left ahead of them. I would leave work, arrive just on time to be with them in their appointment, and returned to work in an hour. My colleagues could not believe how fast I did this. It was great, and I thought it would last forever.

The truth is that I had more signs than the Baldorioty de Castro Avenue, and I still do not understand why I insisted that “nobody warns you how difficult it is to take care of your senior parents.” One thing is saying it, and another is to see it coming.  You are invaded by many conflictive feelings, an unprecedented feeling of despair, tension, anger, guilt, and powerlessness. When things got worse, it was such a shock that I decided I would not allow other people to feel lonely at this stage in life. And thus my project Mi Gente Grande was born.  With the project, I started educating myself and experiencing firsthand what it means to accompany your parents in their old age.

A Brutal Awakening

Accepting that I was in denial did not help much –I needed to understand it. I read dozens of articles and finally found my answer. I felt betrayed. My perfect problem-solving parents had become fragile and forgetful.  I couldn’t accept the life change happening to the vibrant heroes from my childhood. In the end, it boils down to the well-known fear of change. I remember that I would often lose my patience with dad. It irritated me that he wanted to fix everything with crazy glue or insisted on working under the midday sun. That intolerance was just fear: fear of losing them and of my own old age. I understood that my old folks were simply fulfilling their life cycle. It was hard to accept this reality, but it finally liberated me from the feelings of guilt. After all, who has not been afraid in their life?

Because I am bit of a complicated person, accepting change was an uphill battle. I have no children, so I had never taken care of anyone. My nieces and nephews were born self-sufficient –not needy at all.  For some reason, all I did with them was have a lot of fun. I seldom changed diapers, and they never got sick with me, so I had no practice whatsoever.  Having accepted all of my weaknesses as a caregiver (fear of change and lack of knowledge on how to take care of another human being), I started on a deep and honest spiritual journey. I asked God to help me flow with the process and take care of my dad in a practical and loving manner, without it feeling like an obligation. 

As dad’s illness quickly progressed and the search for a diagnosis took up almost every hour of the day, I lost my job. Now it was a double loss, and I hated it when people told me, “Look at the bright side, now you can be with your dad.”  Although the comments did not convince me, the extra time allowed me to flow and feel comfortable. I felt very much at peace while being home with them, and finally felt comfortable in my role as caregiver.  Of course, just as I always did with my nieces and nephews, entertainment is my specialty. So I sang, danced, and laughed a lot with my father while I learned and helped mom with the harder chores. 

The Inquisitive Caregiver

Once my father’s disease was diagnosed, I became the nightmare of any doctor.  I frantically asked how I could improve my father’s quality of life with an illness that combines symptoms from Alzheimer’s with those of Parkinson’s (Lewy body dementia).  To my surprise, the doctors shared valuable tricks and taught me about the processes happening in his body and brain. Whenever we were successful with a drug or treatment, we all enjoyed a few weeks of stability and routine (we even toasted with sparkling wine, patient included). I felt in control of the situation, until the next crisis destroyed me entirely.  

The tension of looking for a job, launching my business, and the emotional impact of being a caregiver led me to seek the help of a mental health professional.  I started prioritizing my own needs, one of which was my emotional health. In the midst of the chaos, I have moments of peace and happiness. Then, I worry, cry, and start over again. Two years and a half after dad’s sickness, I understood that this is what the art of flowing means. The most important lesson of my life.

Welcome to the Club

I confess that I hated waiting room conversations, until something special happened to me one day.  I arrived with dad, who was using his walker, and he asked to go to the restroom. All eyes were on me, and I felt people looked at me with pity. When I returned from the bathroom with dad, one of the ladies told me, “I remember when my mom was like that, like your dad. She had Alzheimer’s and died a week ago.”  She told me that, after Hurricane María, while her mother was in bed with her grandchildren, one of them told her, “Grandma is cold.” I saw her eyes brimming with tenderness and peace as she remembered her mother. And I finally understood that it was a natural and beautiful process. I do not know how to explain it, the woman was happy.

 Although I felt every day as if my heart were hanging from a thread, fear lodged in my throat, I remembered Auntie Haydeé. The memory of a happy and loving caregiver inspired me. Seeing my mother as the 24/7 caregiver of the love of her life was wonderful. Mom, at her 80 years of age, could remember the smallest details about the caregiving process for a disease as complicated as dad’s. Her confidence and Faith sustained us both.  I recalled friends who had taken care of their parents and reconnected with them. I heard of powerful experiences that made me stronger. The first walker my father used was given to me by a friend after her father died. I accepted it without needing it, and a month later, it became dad’s salvation.  The waiting room conversations that I used to hate now interested me to the very last detail. I felt like an advocate for the caregivers of seniors and wanted to shout it from the rooftops: I now belonged to a community, and I was not alone.

My father passed away two weeks ago. At this time, I feel a peace of mind that I may be able to explain two years from now. For the moment, I only know that a caregiver just needs to be present in the life of those they love. This means injecting insulin, buying medications, spending hours in waiting rooms, cleaning, arguing, cooking special diets, and crying. It also means smiling, singing, listening carefully, pleasing, remembering, eating, drinking, and living. I wish someone had told me that merely sitting quietly besides my old man would vanquish the fear and guilt, and forge a special connection that outweighs the scares.  Caregiving is living, it is just another stage of life.