On Role Reversal: Caring for your aging parent

It was the first time I saw my Mom since her bone marrow transplant for her multiple myeloma. The treatment had put her in the hospital for 29 days. It would bring both devastation and hope for new life. She received high doses of chemotherapy agents busulfan and melphalan, including a couple of experimental agents for multiple myeloma – gemticabine and panobinostat.

Mom’s Hospital Course:

As predicted her hair fell out and she lost her appetite. What we didn’t expect were the slew of complications that followed. The day after her bone marrow transplant she developed neutropenic fever from C. Diff colitis – a bacterial infection of the colon that is lethal in some cases. With the chemo wiping out her immune system, this made me nervous. She also developed a cough which dislodged her central line. Rather than her central line in the subclavian vein it was now in her jugular vein. It took several attempts by multiple personnel to get the central line into the right position – each attempt to reposition increasing the risk for stroke, heart arrhythmias, heart attacks, clots and bleeding. She also had a low blood count and low platelet count requiring both a blood transfusion and platelet transfusion. Mom developed severe mouth pain from the chemo requiring a PCA pump – a device where she could press a button and immediately receive a dose of morphine. Unfortunately, the high doses of narcotics led to hallucinations. Furthermore, she had somehow developed a blood clot – despite the low platelet count – in her jugular vein, likely from the repeated attempt to adjust her central line. It would be days before the platelet count would be high enough where they could finally put her on a blood thinner.

And yet by the grace of God, she was able to beat each of these complications. Her cell counts increased indicating that the bone marrow transplant had been successful. The diarrhea and fever from the C. Diff had resolved. Her pain medicines were dialed in so she could be able to eat without hallucinations. Her central line had been successfully adjusted after the same hospital staff person prayed with her. Her daily lab draws showed that her white blood cells, red blood cells and platelets were now stabilizing. She was doing physical therapy daily. Despite all the complications, Mom would be discharged as scheduled after 29 days in the hospital.

Seeing Mom for the First Time

This past weekend was the first time seeing Mom in person since those events. The last time I had seen Mom was a couple months ago – before the bone marrow transplant, before the chemotherapy, before her hair fell out, before the clot in her jugular vein.

On the flight from Spokane to Houston I kept myself distracted catching up on continuing medical education credit and watching a documentary. After traveling for about 10 hours I arrived in Texas, greeted by the warm humidity as I stepped through the automatic doors of Hobby Airport.

After a short 30-minute drive, I finally stepped into the residence where Mom was staying – the house of her sister, Auntie Connie Maquio who is also battling multiple myeloma. It’s a good middle-class house. The door is kept locked with one of those number pad locks. Apparently it wasn’t working and I was able to step right into the house.

As is customary in a Filipino house, I slipped out of my brown Dock Martins and socks and felt the coolness of the tiles at the front door entrance. Auntie Connie was sitting on the sofa in the living room. Her right arm was in a splint and she had a bruise under her right eye. She smiled when our eyes met but couldn’t get up to greet me. After all, she was fighting her battle against cancer, too.

“What happened to you?!” I asked feigning my surprise.

Her husband Uncle Cesar had already told me the story of how she fell twice in the last few months. Her right arm had fractured. Thankfully her hips had remained intact.

“I fell,” she said without much emotion.

I went over to her and gave her a bear hug hovering over her. She wrapped her arms around me all the while sitting down. “I love you,” I told her.

I waited in the living room while Mom was in the restroom. Apparently she was busy cooking for me during the day. She couldn’t cook meals on her own anymore. But she still actively participated and was good at delegating in the kitchen. Aided by Auntie Edith she walked to her room to lie down. Normally she would have come out to greet me. Now her energies were depleted.

I had seen Mom on video through our Marco Polo app. She had lost her hair. Her voice was hoarse. But nothing quite prepares you to see your Mom after chemo, especially someone who you’ve remembered brimming with vitality.

I entered the room where Mom stayed. The wooden floor of the room was swept clean. The dresser covered with medical supplies. Two Tupperware containers full of orange prescription bottles with white tops. The cough syrup and morphine liquid were contained in ziplock bags. The temperature was cool. The air had a stillness to it. Actually it was probably more of a heaviness than a stillness.

I turned to the bed and saw mom laying on her left side with her back turned away from me. Her hair was mostly gone with a few gray strands remaining. For the first time I saw the shape of Mom’s head. Without a full head of hair, it was as if her scalp was naked. She looked vulnerable.

Mom also looked smaller. I found out that she had lost about 40 lb throughout the whole process, more than 20% of her total body weight. More to the point, her arms looked disproportionately spindly compared to the rest of her body.

I would later find out she would need assistance with walking most of the time – either using a walker or holding onto someone’s arm. Even then her gait was unsteady and she couldn’t trust herself to stay upright.

I would also learn that her cough would keep her up at night every one to two hours. These forceful fits of coughing were relentless and left her drained. Other times they lead to vomiting or dry heaving.

Her appetite was also poor. Her best chance was for Auntie Edith to put food such as blueberries and bananas in a Bullet blender with almond milk. She would drink it out of glass jar with a straw but could only handle a few sips.

But there I was seeing my mom for the first time since the bone marrow transplant that brought her both devastation and the hope of life. I moved toward her, my eyes brimming with tears. Mom instinctively rolled onto her back and turned her head toward me. I hugged her burying my head into the nape of her neck. Tears flowed from both our eyes now.

“My son,” Mom said through a hoarse voice.

“My son,” she repeated.

With those words, she said so much.

My son I’m so glad you came to see me.

My son I’m so proud of you.

My son I’m sick and suffering.

My son I’m scared.

My son time is so precious.

My son I love you.

My son.

I released my embrace and wiped away the tears. Mom was tired and strong emotions seemed to always trigger a coughing spell. I needed to let her rest. Afterall, she had just cooked me a meal. Even at her sickest moment she still had to be a mother – giving up her own energies, so I could be nourished.

Caring for Mom

I spent the holiday weekend being the 24-hour caregiver for Mom. Whenever a coughing spell would erupt, I brought her cough syrup. When she felt enough energy, I coached her through chair exercises and steadied her gait while she walked. At night I slept with her to attend to her needs whenever she would wake up from coughing.

In John chapter 21, the author talks about the stages in life. “When you were young you dressed yourself and went wherever you wanted. When you were old, someone else dressed you and you went where you did not want to go.

I reflected on this verse as I rubbed Mom’s back. I couldn’t help but think of my own childhood. Mom said that of her three children I got sick the most often. Burning up with a fever, Mom would force me to drink water. Without any appetite, Mom would make me eat lugaw – a Filipino rice porridge. But what I hated the most was being compelled to take a cold shower. Feeling cold at a 102 temperature, cool water was the last thing I wanted to feel. And yet after I dried off my shivering body, I would slip into a fresh new pair of pajamas. Getting underneath the covers, I finally would begin to warm up. The best part of it all was when Mom took the greasy ointment of Vick’s vapor rub on her fingers and began to rub my back. It stung at first but then would begin to bring calm and relief.

It was these memories that began to flood me as I rubbed Mom’s back. Now it was my turn. It was my turn to get her to eat. It was my turn to get her to exercise when she didn’t feel like it. It was my turn to get her water when she lay sick in bed. It was my turn to massage her.

With the greasy ointment of Vick’s vapor rub on the tip of my fingers, I began to gently rub Mom’s back. After a few moments, her hand would begin to twitch indicating that she was beginning to doze off to sleep.

I couldn’t help but think that the same thoughts I had toward Mom at that moment were likely the same thoughts she had to toward me when I was sick in bed.

I thought of how much this individual had changed and formed me.

I thought of how grateful I was to care for such a remarkable human being.

I thought of how much I didn’t want this loved one to suffer anymore.

I thought of what the future could be like after the illness.

I thought of the overwhelming love I had for this person.

All the while knowing, this loved one had also rubbed Vick’s on my back and thought such wonderful thoughts toward me.