Writers connect the dots between health and care while bearing the weight of their parents’ well-being.

Health: Parental Care

From our earliest awareness of being alive, we know someone is there to nurture us, care for us and provide love. As we grow, we hopefully will mirror these same patterns to others in turn. We learn compassion by being there for the people in our lives.

Alzheimer’s caregiving changes every single bit about what you thought you understood about nurturing, caring and loving. It attacks your understanding about acceptance. The person you have a relationship with is suddenly not the same. Situations become uncontrollable. Things become overwhelming.

Prior to their diagnosis, my parent had been living alone. My siblings and I had noticed that things around the house were not being done, and began to realize that our parent was a danger to not only themself but others. Before this change, I led a busy life as an educator and community leader. My relationship with my parent had been in pretty good shape. However, with all the changes in behavior and physical health, things between us changed drastically. Resentment and fighting took the place of humor and comity.

My siblings and I decided to join forces and get our parent to a doctor. The doctor diagnosed their Alzheimer's almost immediately. The day after a very disturbing MRI was completed, my parent had just enough cognitive awareness left to decide that we were all going to the lawyer’s office. During our appointment we listened in shock as the parent assigned us our roles, not asking us if we could handle them. I was assigned as the healthcare provider, which meant a major move for parent, possessions and pets.

I had no clue where to start, and I felt like I was being thrown into a whirlpool.

I am not a medical professional, and I wasn’t qualified to give my parent the care they needed. I felt like I was drowning. There was a daily grind of watching their mind and body decay, a lack of meaningful communication and a constant need for someone who could understand me. I was grieving the loss of a parent while all these changes were happening at once.

Not only was my energy being drained, but I felt like I was being pulled under by a raging current. Coming up for any type of relief only found me unsure of what life would become. How long was this almost prison-like existence going to drag on? Between information I found on my own, in conversations with others who’d been down the Alzheimer’s caregiver road, and from a book called 

, it looked like this was going to take every hour of my life for the next 20 years. At this point, I felt like I might as well just crawl in a hole.

My thoughts also raced ahead towards my own future. Would my children face the same horrors as I aged? These thoughts brought about a million more questions and uncertainties.

 suggested that finding an Alzheimer’s support group in my area, where I could find people walking the same path, could help give me clarity. Having been in other support groups before, I knew how helpful they could be. However, what I found were people who were more focused on laying out a decades-long sentence for me, rather than helping me navigate what was happening in the present. When I tried to explain my situation, it was glossed over. Instead of feeling uplifted, I felt more isolated than ever. I felt my life would never be my own again. I was crushed.

My immediate family became the only ones I could depend upon. However, due to our jobs, locations and ages, this wasn’t so easy either. Support looks very different from one relationship to another. My brothers only called or visited every once in a while. One was more supportive than the other, so relations with the other became fractured. I was angry not only at the situation, but at my brothers.

This was their parent, too. Why did I have the majority of the responsibilities? My children sacrificed much for me, yet I felt I couldn’t let them know just how excruciating all this was. My husband and I were physically drained, financially strained and emotionally bankrupt from the caregiving and all that came with it. Without the support I’d been seeking from others who had walked this road before, it was incredibly hard for us to make sense of what was happening.

Amidst all the daily bitterness I was experiencing, little bits of grace began to surface. My next-door neighbor was always ready to sit with me for hours, several times a week. After all the turmoil of the day quieted down, we’d sit outside and watch the stars, sip a glass of wine and simply exhale. Other friends occasionally brought hot meals so we didn’t have to cook. My children would call, visit, send text messages and give big hugs whenever we were together. My husband took over some chores when he saw that I was so overloaded I could hardly stand.

All these bits of grace were like rain on a parched field. Yet, as my parent’s Alzheimer’s progressed, the days began to blend together. Surviving replaced living. My day would start with getting my parent out of bed and to eat. At first, this wasn’t too hard. Then, my parent would walk to the living room and sit for the next eight hours. I would encourage walking, using the bathroom, even engaging them in simple activities like children’s games. Peppered in with these days were doctor’s visits. My parent’s neurologist consistently was shocked at their rapid decline over just a few months.

During the summer, the first escape attempt occurred. It resulted in a broken pelvis and a brief stay at a care facility. “Whew,” I thought, “a bit of a break for my head and heart.” Or so I thought. The facility required check-ins so that a patient didn’t feel dumped, so I had to make daily trips there. That was until my parent tried to escape the 

. This was not only more stressful, but it was embarrassing.

After even more check-ins, plus an ankle bracelet for my parent, it crossed my mind that I could simply get in the car and drive to another place—somewhere where I could live without the daily crises. Then, the facility called and said that they had done all they could, and that my parent needed to come home. This took away whatever small break I might have had. I felt so angry with my parent. Upon their return, I was a bit unkind. It was then that my husband held me and said I had to remember that, while I knew who my parent was, my parent didn’t know me anymore.

Grace Showed up Unexpectedly, in the Form of Caregiving

During the steep descent of what was left of my parent’s Alzheimer’s journey, mini-strokes became frequent. These also decreased physical movements. Eventually, after being rushed to the hospital (

), the doctors determined there was no other recourse than hospice care. When it became clear that hospice was our only course of action, I faced a whole new set of concerns. In some ways, I was just as afraid as I was when tasked with medical power of attorney.

In my mind, hospice only meant one thing: Death was very close. But grace showed up, and I learned that hospice meant in-home care for as long as needed, even before being admitted into a hospice facility. This new knowledge meant I would finally have a doctor and registered nurse to guide me, as well as the nurses assigned to visit my home.

Still, the stress of daily decline took a toll on me. On the days where I didn’t feel like I was drowning, I still felt I had to keep everything inside. Everyone in my home was suffering right along with me, and I didn’t want to add more strain by asking them to take care of me. At that point, I didn’t understand that sharing what I was going through could actually strengthen our connections.

It was on one of those really bad days that the biggest grace of all entered my life. In constantly searching for Alzheimer’s resources, I found a national charity offering grants to cover professional caregiver services. All I had to do was fill out an application and tell them how I could use the extra care and support in my in-home caregiver role. As I wrote down my story, I cried. When I read the story to my husband before submitting the application, I sobbed again. I was about to “go public” that I was in over my head and needed help. The promise of help was so needed, but I was also overwhelmed. What happened if I wasn’t selected? What then?

A couple of months passed with no word from the charity. It felt like I was slowly sinking under the waters of despair again. Then one day, I received a knock at my door. It was the head of a local in-home healthcare service. I had been awarded 15 hours a week in caregiving that would be combined with the hospice in-home care. The two services even made it a point to meet together with me to draft a plan of action. Talk about grace! Suddenly, the waters above my head subsided.

Six months into the new routine of hospice and healthcare nurses, my parent had declined enough to be transferred to a hospice facility. By then, they had developed Parkinson’s alongside their Alzheimer’s, so in-home care had become almost impossible. The caregiving grant and services were no longer needed. It was explained to me that moving from in-home to facility didn’t mean just hours or days; they might be there for an extended period of time.

Grace had other plans. A week after being admitted, my parent’s body finally succumbed to their illnesses.

I was there every day of the last week of my parent’s life. No conversation was needed. The ability to speak had left them months before. No food was needed, as the ability to eat had left not long after that. So what did I do? I sat and simply talked out loud.

During that final week, my parent had a birthday. It was probably the most conflicting experience I will ever endure. The staff had baked a small cake and waited until I arrived to gather around my parent’s bed to sing “Happy Birthday.” While my parent was unaware, I was overwhelmed with so many emotions. I thanked the staff for their efforts, remembering the much more joyous birthdays I’d shared with my parent, memories that conflicted with the empty shell I saw before me in the bed.

On the day my parent finally passed from pain into glory, I wasn’t there. I had visited that morning and said my by-now daily prayers and goodbyes. Then I left. Around the time my parent took their last breath, I was laughing. I’d been given the gift of attending a local comedic play from one of my children. This final act of grace had slain the bitterness of what I had been through over the past two years. Watching the play was the relief I’d needed for so very long. As I was laughing at a funny scene, I saw my silenced phone light up. I knew by the number that it was the hospice center. There was only one reason they would be calling.

Finally, the drowning, gut-wrenching parts of this Alzheimer’s journey were over. I could begin the journey back to my life. I could begin to heal inside and out. Nothing would be the same for me again. It’s a work in progress, even now, four years later. And that’s OK, because when we share our stories, we connect. We gain compassion. Then, we can move on to what’s next.

My parent's decline turned my life upside down.

Being an Alzheimer’s Caregiver for My Parent Was the Hardest Thing I’ve Ever Done

At this point in my life, I was certain I would be a successful TV writer and actor. Of course, success means different things to different people, but I imagined I would be nominated for an Emmy, which I would surely lose. I would receive DMs from my idols, telling me they liked my work and were excited to see where my career was headed. Shit, I thought I would have at least hooked up with some hot actor I had always crushed on and been disappointed by the experience but secretly happy to have a story to tell my friends back home about.

But life had other plans. In August of 2020, my mother was diagnosed with dementia. She and I had always had a really difficult relationship, but I had no clue the incredible toll I would soon be paying for all of the resentment I had caused her over the years. Looking back, I don’t regret the time I’ve had with her, but I do regret putting myself in the position of being her main caregiver and pausing my career when I did.

I recently celebrated my 30th birthday, and I find myself trying to reenter an industry that is infamously ageist and misogynistic. Just a few years ago, I was so certain I would have much more than the nothing I feel I have to show for myself now.

My Mother Was Diagnosed With Dementia, Putting My Move on Hold

In 2017, I moved to New York to finally pursue my TV-writing dreams. After two years of training in acting, writing and improv at Second City in Chicago, I had had enough of trying to climb a ladder to success that only had room for white performers and writers at the top. With no job lined up, I answered a Facebook post from an improv acquaintance searching for a roommate in their small, railroad-style Astoria apartment. I had no connections to the industry, no experience and a huge rent to pay.

A networking event landed me a job at Anthony Bourdain’s production company, where I worked as a production assistant on a diverse, all-female crew. It was a dream role that paid decently, had normal hours and, for the most part, was low-stress—a unicorn position as far as working in the industry goes. I moved on to a popular late-night talk show but eventually quit what turned out to be a toxic workplace. With money running low, a frustrating roommate situation and no experience writing for TV, I set my sights on L.A.

Around this time, my mom began complaining of a sharp, mysterious pain in her head and had feelings of being submerged underwater. She could no longer handle loud noises or daily tasks. For the next two years, she continued to suffer mysterious symptoms: She went deaf in one ear, developed Meniere's disease and vertigo, and could never quite shake the feeling that she was “wearing a helmet.” We took her to the state-run hospital, but after all sorts of tests, ranging from sleep studies to a spinal tap, my family and I were deeply unsatisfied with the care she was receiving and decided to eat the cost of an emergency room visit at Rush hospital in Chicago. 

Within five hours of admission, we finally had answers. It turned out she had suffered a stroke silently, which eventually led to dementia. The temporary relief we felt was soon replaced by dread. For the first time in my life, I fell into a depression. Trying to grasp that our mom had a disease that everyone is afraid of watching a loved one suffer through was daunting. I remember not sleeping that first month post-diagnosis and having constant anxiety for the first time in my life. 

My Siblings Weren’t Prepared to See Our Mother Like This

How long would it be until my mom no longer remembered who I was? At this point, I still hadn’t come to terms with the fact that our troubled relationship would now always be troubled, with no room for improvement. I was able to make peace with this at first because I loved my mother deeply and unconditionally, as good daughters in Middle Eastern and Hispanic cultures are taught to do. It’s ingrained in us early that our parents sacrificed and gave up their homeland to ensure we had a future. It gave them a free pass forever. There were no punishable offenses and no expectations for apologies or therapy, especially if you’re a woman.

But starting at 12, I refused to spend my summers indoors cleaning while my brothers went swimming with their friends. I went away to university and slept in a dorm. I studied abroad. I worked three jobs and liked it. I had no desire to give up my independence, settle down and get married. I was being punished for breaking that unspoken agreement. Things only got worse after my parents’ divorce. My siblings and I refused to cut our father out of our lives to punish him for hurting our mother after it had been revealed he was having an affair with a colleague for years. She turned to us for the emotional support she had never received from him, and I was always unable to meet her demands because of our already-strained relationship.

I was naive in those first few months and thought they were my opportunity to redeem myself. Now I could be the dutiful daughter she had always accused me of not being. I never realized what my staying meant for my family. It led to them slowly but surely moving along in their own lives. Their visits to my mother became more scattered and shorter as my mom’s dementia progressed. They weren’t prepared to handle the emotional, verbal, mental and sometimes physical abuse that unfortunately can follow a dementia diagnosis. Gone was the doting, sweet mother they were used to—here was someone who more closely resembled the mom I had grown up with.

I Should Not Have Put My Career on Hold to Be a Caregiver

Of course, the pandemic being smack dab in the middle of my journey didn’t help. Still, I feel I should have left sooner. If I knew then what I know now, I would have gone to L.A. as soon as it was safe. I would have only seen my mother occasionally, instead of staying and allowing myself to become the focus of her frustration, as is normal for people with dementia. I would have run.

Now I feel like I’m moving into my 30s and watching everyone I was working with achieve milestones. I feel so behind and, to be honest, it wasn’t worth it. I have taken a beating for choosing to stay and mend a relationship that was so far gone before any of the hard shit even came along.

As a caregiver to an aging parent, I feel as though all my peers have left me in the dust. 

When My Mother Got Dementia, I Put My Career on Hold: I Wouldn’t Do It Again

I grew up understanding that my body was strong enough to withstand the most extreme of conditions and that the answer to illness was always in nature. When I got sick as a child, my mother would create a cocktail of herbs to remedy whatever condition I had. I have always upheld this way of living, and—knock on wood—I’ve never had anything more serious than a bad cold or ear infection.

About five years ago, I moved from New York to Los Angeles to help care for my mother, who was now 74 years old and had been experiencing recurrent brain tumors. According to her doctors, she had six months to live. In the process of taking my mother to appointments and overseeing her long list of medications, I had an eye-opening journey that made it clear how broken the medical industry really is. I was shocked to see how doctors she had trusted for years had become lost in a dark forest of hospital politics, legal liabilities, pharma rewards and incentive programs. And I was shocked to experience how my own mother had been turned into a pill addict.

Overly Prescribed Medications Prompted Me to Be My Mother's Healthcare Advocate

Once at a pharmacy pick-up window, I was asked to have my mother choose which of two medications she would prefer to continue. They explained that her doctor had realized that he’d been giving her two identical medications to treat the same ailment. I asked them a few questions and found out she’d been overmedicated for over a year. I also asked how it’s possible that a doctor would ask the patient which medicine she preferred. At that point, my mother could hardly speak. She was drugged up literally all the time on 20 different medications. She was in almost a catatonic state and in no condition to give any form of opinion.

Confused by the situation, I immediately called a friend who’s a doctor. He explained the two medications in question and helped me discern which might be best based on my mother’s present condition. I also contacted my mom’s primary doctor’s office. The doctor wasn’t in, but the assistant explained that the office had changed suppliers a while back, and somehow my mom's file was not updated. They apologized, but in a very nonchalant manner, as if nothing important had happened.

To top it off, she added that “The doctor has added one more painkiller to help manage the pain she was experiencing at her last visit.” The doctor was adding prescriptions as if they were free candy. I later learned that doctors are paid incentives by the pharmaceutical companies to prescribe medications. Some of the chaos I was witnessing came simply from a need to move products at the expense of trusting patients.

Discovering My Role as Her Medical Care Advocate After a Lack of Holistic Care

After that, I dove deeper into my mother’s medical situation. Because of the structure of her insurance, as with most insurance these days, she had a primary doctor who oversaw general care but was required to request authorization for specialists the patient may need. Sometimes, that takes weeks, and with severe medical situations, this can be a matter of life and death.

My mother’s primary doctor had been in charge of her care for more than 12 years, and it turns out that during this time, my mom had six other specialists also giving her treatments, mostly in the form of medication. The only problem was that once the initial diagnosis and treatment were given, these caregivers didn’t communicate with one another and didn’t track the interaction of the medications. Nor did they monitor changes that might indicate my mother no longer needed certain treatments. In fact, when speaking to her heart doctor, he explained the minor heart attack she had recently suffered may have been induced by the medication she had been given by her neurologist to combat the anxiety attacks she had suffered during her recovery from her recent brain surgery.

When I asked her doctor how long my mom would need to take this new pill, he told me, with a certain confidence, that she would need to be on it for life. My Spidey sense was immediately triggered. After a couple of sleepless nights, I decided to call a friend in New York who works in the field of toxicology. He recommended that I have my mother undergo a medical reevaluation by an independent medical consultant. Of course, these types of alternative treatments and therapy are not covered by insurance and have to be paid out of pocket. I felt mentally, physically and financially drained but booked an evaluation anyway.

Prescription Kickbacks Underline the Importance of Advocacy in Healthcare

I was overwhelmed by dealing with my mother's medications and the doctors insisting on starting chemo or radiation treatment to keep the brain tumors from returning for the third time. It felt like a bad dream. None of the doctors were making sense at this point. I decided to break away from it all for a few days and went on a long hike to clear my mind.

As I walked in the sun, I thought back to what my friend had told me. “It sounds like the doctors are just keeping your mom medicated to reduce her discomfort,” he said. “They may not know what else to do. It’s hospital policy to recommend chemo or radiation for all cancer patients, despite the known fact that in most cases, it weakens them further and can sometimes be the main cause of death. They do it to protect themselves from liabilities. It doesn't matter whether the doctor agrees or not with the treatment. As an employee of the hospital, they need to follow protocol.”

“At some point,” he added, “it's all about the unimaginable profits from treatments and medications. In fact, they want to keep people alive as long as they can, even if it means the patient lives in constant pain. Chronic disease is big money.”

I was haunted by the sense that my mother was trapped in a system of medical politics and profit margins. Money! Money! Money! And very little care. My head felt like it was about to explode. I was almost at the top of a hill. I looked up at the sky and noticed how clear it was. I felt the fresh air in my lungs and was mesmerized by the swaying trees around me. Suddenly, I connected to another reality, to memories of my mom giving me one of her all-natural concoctions and saying, “Take this; it will make you feel better.” The image pulled my mind out of the downward spiral of worries and anxiety that moments earlier had overtaken me.

My Advocacy Changed the Direction of My Mother’s Treatment (for the Better)

I couldn’t believe how my mom’s doctors had mismanaged her care. It drove me to do my own research. After all, according to the doctors, my mom had very little time to live. I proceeded to remove my mother from this misguided system and started a natural and holistic treatment based on many healing traditions from around the world.

We began with healing the mind by facing her fear of death and regrets. My mom had conversations with relatives, friends and others with whom she wanted to make amends. For those she could not reach, or who had left their bodies, she wrote letters asking (or giving) forgiveness and then we burned them to complete the release.

Then we began to make preparations for her funeral. She purchased a cemetery plot and casket and decided which clothes she would be buried in. Then we removed all processed sugars and foods from her diet and began to cleanse her system of the toxins that had built up from years and years of pills and environmental exposure to chemicals. She went on a fully vegetarian diet, and for the next three months, she lived exclusively on green juices, vitamin C infusions and other nutritional supplements that, instead of destroying her system like the chemo would, helped rebuild her strength.

After two and a half years of experimenting with holistic practices, my mom was pronounced clean of cancer. Now, six years after her initial diagnosis, she continues to remain strong, without any trace of disease.

Everyone Deserves a Patient Advocate Willing to Demand Proper Care

I learned from this experience that anyone who is under medical care needs an advocate at their side who is willing to demand proper care, even if it means going against the system. My mother’s generation considered doctors all-knowing and unblemished people worthy of respect, but the times have changed. My experience opened my eyes and reminded me that doctors are human too. They make mistakes and are as susceptible to the dark side as anyone else.

When doctors told me my mother had six months to live, I moved cities to help take care of her. It made me realize how broken the medical industry is.