Caregiving for Mom: What they don’t tell you

It was nearing 2:00 in the afternoon on a hot and muggy mid-August day. I tried to listen intently as the nurse ran through instructions, medication schedules, follow-up appointments, discharge papers, and so on. Sign here. Initial there. 

“Any questions? Will you need help getting her in the car?”

My head was spinning trying to process everything she was saying. I couldn’t stop thinking about what things would look like now. 

When all of my mom’s belongings had been gathered and packed up, and all paperwork had been signed, the nurse handed me what seemed like a large paper grocery bag full of medications and supplies. I had never felt so overwhelmed in my life. I felt a lump in my throat and the tears welling up in my eyes. I just wanted the nurse to assure me everything was going to be okay. 

As difficult as it was, I kept myself together. I took a deep breath, thanked the nurses, then we headed down to meet my brother who was waiting with the car.

After a month-long stay at the hospital and my daily back and forth during visiting hours, Mom was finally going home. But little did I know that this was just the beginning. 

Our new normal

My mom’s stroke caught my family like a deer in the headlights. It was all so surreal. From one day to the next, my mom went from planting hydrangeas in her garden and making her famous flan for my nieces — to the intensive care unit of a hospital, unable to speak or move.

And now, a month later, she was back home. Or rather, a new version of my mom came back from the hospital. She wasn’t the happy, loving, strong, and independent mom we knew. She was now a stroke survivor who had to navigate life in a wheelchair, unable to communicate her most basic needs. She was now completely dependent on us. 

Over 65 million people (29%) of the US population give care to chronically ill, disabled, or elderly family members/friends. They provide an estimated 20 hours a week of care. On average, adult children giving care to aging parents are women around the age of 49.

One of the bedrooms in my parents’ home was converted into a pseudo-hospital room for my mom, hospital bed and all. My days as a caregiver now consisted of administering morning, noon, and evening medications, checking blood pressure, checking blood sugars, checking for soiled diapers, and checking in on my mental health as I continued to process this new normal.

It was as if I had taken on a second full-time job I didn’t apply for and was desperately trying to keep the spinning plates from falling and crashing on the floor. They eventually crashed and I lost my job right before the holidays. 

I felt the weight of the world on my shoulders as the eldest of three kids and the single daughter. My brothers offered to help, as did my father, but it was mostly just me “manning” the ship. I was on call, the fixer, the one looking for answers in this unknown territory that we now found ourselves in, especially during the months immediately following the stroke.

“Your mom’s insurance has changed. We can’t see her here anymore.”

“It’s possible she’ll need a pacemaker. Bring her to the ER immediately.”

“She’ll have to go on seizure medication. This is common for stroke survivors.”

“We’re calling to remind you to schedule your mom’s therapies and home nurse visits.”

It seemed like my mom’s health problems just kept coming, and we were frantically trying to keep our heads above the treacherous waters.

Self-care is also caregiving

As the days all blended one right after another, it wasn’t long before I found myself on the emotional roller coaster of being a caregiver. Burnout had set in, and the daunting responsibility and commitment of caring for another person had me at a breaking point. Yes, there were days when I was just thankful my mom was alive and I was able to hold her and hug her. After all, she was making progress on her recovery, albeit very slowly – but progress is progress.

More often than I’d like to admit, I just wanted to run away from everything. Not only did I have to deal with my own mental health from the stress, but I also had to steep deeply into feelings of sadness, anger, and helplessness as my mom went through mental and emotional crises.

How do you console someone whose life has gone through such a radically unfortunate change? All you can do is hope and pray the next day will be less heavy.

Estimates suggest that 40–70% of caregivers experience clinically significant depression, and 25–50% meet the criteria for major depression.

Mom’s and my village

I had come to the realization that I couldn’t continue to carry the brunt of my mom’s care. I had to let go or my mental and physical health would continue to suffer. I sought and accepted help in every way. The brief therapy sessions I was able to pay out of pocket were a godsend and relief. (We need better access to mental healthcare so desperately.)

One brother began to take over scheduling Mom’s doctor’s appointments, while the other helped with picking up her medications or groceries when I was too busy with her.

The more time my dad spent with my mom as her caregiver, the easier it was for him to tend to her needs — and the easier it became for me to ask for help when I needed it. After a few weeks, I was even able to jump on the Peloton for a quick workout, while he prepared her lunch or sat and watched television with her. 

I started feeling freer, better, and more like myself, slowly but surely. It truly takes a village. 

Now, nearly three and a half years later, I can say that caring for a sick parent will always be challenging, no matter the circumstances. It still is. However, I’m so proud of how far my mom and family have come from that terrible summer. Though she may not be the same woman she was, my mom is healthy, my family is closer, and I am stronger than I ever knew I could be.