Mom-ents: Accompanying Mom on Her Journey with Dementia and Cancer

By Tobi Robbins

Life is made up of moments—that's all we have. Moments in time with the people we love, and then they're gone. Sometimes we find ourselves in situations that we never expected, and then we wonder how we are going to manage. Mom-ents is my experience caring for my mother while she faced the struggle of dementia and breast cancer. Together, we walked through the darkness and the unknown. We muddled through it, sometimes with skill, sometimes by guesswork, and a lot of times by accident. This is our real human journey of love, laughter, and tenderness that I recorded as we went where the path led us.

• Language: English
• Publisher: Page Publishing, Inc.
• Release date: Sep 16, 2020
• ISBN: 9781647013035

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Mom-ents

Accompanying Mom on Her Journey with Dementia and Cancer

Tobi Robbins

Copyright © 2020 Tobi Robbins

All rights reserved

First Edition

PAGE PUBLISHING, INC.

Conneaut Lake, PA

First originally published by Page Publishing 2020

ISBN 978-1-64701-302-8 (pbk)

ISBN 978-1-64701-303-5 (digital)

Printed in the United States of America

Table of Contents

July 2018

August 2018

September 2018

October 2018

November 2018

December 2018

January 2019

February 2019

March 2019

April 2019

May 2019

June 2019

July 2019

Special thanks to my dear friend, Glynne, for spending countless hours with me on the phone during a pandemic, going through Mom-ents one page at a time. And, to my friend, Jonah, who supported me on the journey and encouraged me to write about it.

Preface

When I first started putting down words to tell our story, I didn’t think I would have anything to say. And then the pages started filling up. My intent on writing these moments with Mom sprung from seeing and hearing so many stories of people fighting cancer. I watched and heard about their loved ones being by their side and offering support. Also, the confusion of dementia on top of the stress and anguish that cancer causes encouraged me further. My hope is that anyone accompanying a loved one through dementia and/or cancer will feel validated and supported. I won’t say I did everything I possibly could do, and I certainly won’t say I did everything right because that just isn’t the case. We are all human. But I did what I could. I will struggle with my regrets and will smile with happy memories. And most of all, I will always be grateful that I had this time to share with my mother.

I hope you enjoy this mom-oir of mom-eries.

July 2018

After four trips to the emergency room and three stays in the hospital for severe pain, swelling, and redness in her breast, Mom put her foot down. I’m not going home until I feel better. That said a lot because Mom didn’t like to be in the hospital at all even though we had earned frequent flier miles for our many visits—so many visits that I started saving all my visitor stickers as earned badges.

Mom had been in the hospital for a week. Her breast was red and swollen. Several doctors had said it’s mastitis. Mastitis. Mastitis. Every test, every image taken—This is characteristic of mastitis. She had been on antibiotic after antibiotic to no avail.

Several blood tests, infectious disease cultures, X-rays, a biopsy, and a week later, in severe pain and still no answers, she agreed to get discharged. It was a Friday. She went home. She was willing to go because a biopsy had been done, and cancer wasn’t detected. So home we went. No answers but relief that she didn’t have cancer.

That was until the next morning when I got a call from the hospital. Me, not my mom. I got the call. And to add to the dilemma, on a Saturday morning. I remember the call quite clearly, You need to call this doctor. He’s an oncologist. One of the tests showed positive for your mom for inflammatory carcinoma.

Here I was, suddenly tasked with the responsibility of going home and telling my mom she had cancer.

I thought about it. If I told her, she would stress all weekend. She had no one to talk to and ask a hundred questions. Questions for which I had no answers. I thought, I’m not a doctor. What more would I be able to say other than, Mom, the hospital called and said you have cancer, and we need to make an appointment with an oncologist and add any words or gestures of comfort I could think of.

You have cancer was something you hear from a doctor or at least at a time you could get answers to your questions.

After consulting with my sister and Mom’s sister, Rose, I decided to let the doctor tell her. I didn’t know if that was the right decision, but I made it. And all weekend, my heart was heavy, knowing what I knew, and Mom didn’t know. I tried not to act differently toward her as if something was up. And I carried the weight of the questions and uncertainty ahead of us.

I called first thing Monday morning for an appointment. They got us in right away. When we got there, I thought for sure she would see the word oncologist next to the door and get concerned, but she didn’t. She was just dragging herself inside, weak and tired from going here and there, seeing doctor after doctor, having test after test, and getting worse and not better.

The doctor told her, not empathetically but matter-of-factly, You have cancer. This is an oncologist’s office.

Mom, What?

Cancer. You need to get an appointment with this surgeon for a mastectomy. Are you up to that?

Mom was numb, but we got the information.

You may need radiation as well, but let’s not worry about that right now. We’ll discuss that after you have time to heal from the surgery.

He left the room to get paperwork.

Mom decided while he was out that she didn’t want the surgery. When he came back in, she asked how much time she had left.

He didn’t give her any specific information, saying he wasn’t going to guess.

I’m eighty! Mom said.

We went home to get in touch with the hospice.

And there we were—cancer. Ten days after her eightieth birthday.

August 2018

Hospice was set up right away. An oxygen tank was delivered. The plan was just to keep her comfortable. That’s what she said she wanted. I didn’t try to talk her out of it or into having the surgery. I wanted to be supportive in any direction she chose. And that’s the way it was for three days. I don’t know if it was her own thought processes or convincing from her sisters, but suddenly, she was going to seek treatment. The oxygen tank was picked up unused. Hospice was canceled. The surgeon was scheduled.

The surgeon was young and egotistical. He did his best, though, in our initial meeting to explain what was going to occur during surgery. However, Mom’s attention span and anxiety required more patience and kindness than he was capable of. He told her she would go home with tubes that would need to be drained, and then he felt around under her arm. He ordered a sonogram. The sonogram of lymph nodes around the breast and in the armpit revealed they needed to be biopsied. I watched as a needle was poked in, and fluid suctioned out. Mom was amazingly still and compliant. We left to await the results and a surgery date.

Between the hospital, the insurance, and the surgeon, getting a date took longer than we had anticipated.

Mom was anxious that the cancer was spreading as everything was delayed, and all we could do was wait.

And Mom kept asking, How long will I have to live if I do surgery? What quality of life can I expect with or without treatment?

No straight answers were given to these very important questions.

Since we had to wait, Mom decided to get a second opinion. We researched for a female breast cancer oncologist. I gathered the necessary records that the oncologist needed, dropped them off at her office, and we waited for an appointment.

The oncologist was quick to schedule us in. When we got into the patient room, Mom had become so accustomed to baring her breast that she unbuttoned her shirt to have it ready.

I secretly nicknamed her The Flasher.

One time, the nurse, coming in and doing his routine, undressed her before she had the opportunity to flash him, and she sat back.

Wait a minute! Aren’t we supposed to be married first? His face was pink, and he humbly apologized repeatedly.

The oncologist for the second opinion was pleasant. She told us Mom’s cancer was locally advanced with eight cancerous lymph nodes in her armpit. The oncologist said Mom’s cancer was treatable, meaning shrinkable, and treatment could make it go away for a while. She said after she heals from the surgery, she would need an estrogen blocker pill once a day. Her cancer is triple positive. HER-2 positive, a protein that says grow. She said most likely not chemotherapy for her but an IV of Herceptin once every three weeks and radiation. But nothing until four to six weeks after Mom heals.

The day of surgery arrived. Mom was weak. I drove her to the hospital, got her in a wheelchair, and wheeled her inside to admitting. I helped with the extensive paperwork as she stared down at the ground and answered some questions. I watched as she reached into her purse and fished out a coin. She stared at it for a moment. Then she flipped it in the air and caught it in her hand. She glanced at it and snapped her fingers, moving her hand to the side as if to say, Shucks! She silently put the coin away. The paperwork was done, and she was wheeled into pre-op.

While I helped her change into a gown and hair cap, I asked her if she was flipping the coin to help her decide if she should continue and have the surgery. She nodded her head and muttered something about the outcome of the flip. Regardless, she was in good spirits. She smiled for the camera as I took a picture. She remained positive and in a good mood until the fifth time they poked her to start in IV. Her veins were challenging even the best nurses. They even used a sonogram machine to find a vein. On the sixth needle prick, they tried the foot. Part of the problem was that they were limited to the right side because she was having surgery on the left side. She was also dehydrated because she wasn’t allowed to have anything to drink.

At that point, Mom said she was leaving, and she got up and out of the bed. We asked for a break. As much as I agreed with her, I encouraged her to stay. I called her sister for backup. Her sister talked to her for a little bit.

Mom relented. They came back in for another try. Finally, the seventh needle prick with a baby needle went into her hand by her thumb. She was ready to go.

The youthful surgeon came in, dressed in a cartoon T-shirt. How are you doing?"

She asked him, Is this surgery going to improve the quality of my life in the time I have remaining?

Again, no real solid answer. He told her to ask her oncologist. But he said not having the surgery definitely wouldn’t help it. I recommend you have it, he said confidently.

She silently and reluctantly agreed.

I was sent to the waiting room. She was wheeled into surgery.

In the waiting room, I was cold and alone. The TV was on, but the noise only increased my anxiety. I couldn’t focus on any of the available reading material. I could only imagine what she must be going through down the hall. The clock ticked slowly.

The surgeon finally appeared and said that she had done very well. She was in the recovery room. Prior to the surgery, we had been told that the surgery would require a one-night stay.

You think she’ll only need the one night? I asked him.

Yes, he said. She’ll be fine.

As he exited the room, I knew he was wrong.

All he told her nurse she could have for pain was Motrin and acetaminophen. She was in serious pain. The nurse had to call him repeatedly to get permission for something stronger. I had to leave her while she was in pain in the hospital to tend to my son.

I called him and left a voice mail message. She’s eighty. She’s in pain. Give her something!

She spent the night in severe pain.

When the hospital doctor came and saw her, he told the nurse, Give her some morphine. Now!

She argued about what the surgeon had said and then went to put the order in.

Things were a little better after that. But due to her pain level, she didn’t go home that day or the next day or the day after that.

What was the surgeon thinking? Does he get in trouble for prescribing pain medications? Does he get demerits if patients stay longer in the hospital?

Her stay was much too long, and he strongly objected.

He marched in and told her, You like too much pain medicine. You need to go home soon, or I’m going to send you to a nursing home, to which Mom gave him the middle finger but from underneath the blanket.

And, fortunately, she went home the day after that. Maybe someday the surgeon will need to have surgery and be told Motrin or acetaminophen only. Better yet, give him nothing.

Once home, I asked Mom once again about her flipping the coin. She mumbled when I asked her at the hospital, so I didn’t understand her answer.

Did you flip the coin to see if you should have the surgery? I asked.

Yes, she said. At the time the coin went the wrong way. Then she paused. But I figured I owe it to you to stick around as long as possible.

September 2018

I don’t remember what I imagined when I pictured what the surgeon meant that Mom would have tubes in her chest that would need to be emptied. But I know it wasn’t at all what I was looking at. It looked incredibly uncomfortable. Inside the surgery stitches were stuffed two rubber tubes that hung down a little more than a foot. At the end of the tubes were little bulbs to catch the excess fluid. It was necessary to empty, measure, and record the fluid or drainage twice a day. I didn’t feel prepared for this new responsibility, but nonetheless, here it was. Sometimes, the blood would clot, and it would have to be worked with the fingers to break it up and bring it down the tube to the bulb.

We were told we could dump the drainage, but Mom wanted to keep it. We labeled the bulbs no. 1 and no. 2 and two jars in the same way. After a few days, the fluid jars smelled rancid, and I had to hold my breath when I opened them to dump in the newest drainage. But she still wanted to keep them.

The bulbs dangled awkwardly at her side and bothered her. So she found an old tool belt and placed the bulbs in separate pouches in the tool belt. She looked rather handy after that.

She was prescribed some pain medication while she healed at home, but she wanted to be able to function, so she didn’t take as much as she needed. Therefore, she was always in pain and complaining.

At night, I was awakened by a noise outside. I went to investigate. It was a tow truck picking up a car. After snuggling back into my bed, my phone rang. Mom had been awakened by the truck too.

What’s making all that noise? she asked.

A truck. I answered.

Chuck? Who’s Chuck? she inquired.

Not Chuck. A truck.

You haven’t said anything to me about Chuck. When do I get to meet him?

Mom, trrrrr-uck!

Oh, okay, good night.

Sudden silence on the other end of the phone.

*****

The pain, the healing, the daily draining of the wound continued until our follow-up appointment. She dragged herself inside and sat down. I checked her in. When her name was called, she dragged herself to the patient room. We played hangman while we waited.

The surgeon walked in and asked her how she was doing. She did her usual response, a smile and a fine. He asked to look at her sutures. He looked over our record of the fluid drain.

We can take those out today. What do you think? he said.

Okay, she replied.

We returned to our hangman game while we waited.

When the nurse came in, she admired Mom’s handy tool belt. Mom was quite pleased with herself.

I convinced myself to watch while the nurse pulled at tube no. 1. And she pulled. And she pulled, and the tube kept coming. For some reason, I thought the tube just went in an inch or so beyond the stitches. My jaw dropped when I saw the length of the tube and how much was inside her. And it was the same thing with tube no. 2. But this one hurt at the start, so Mom asked if she could do it.

Wow, Mom! Can you believe that? No wonder why it hurt so much. I said.

When the doctor came back in to follow up and answer questions, Mom stressed that she was in a lot of pain. He denied any pain medication other than more Motrin and acetaminophen. Mom and I were completely amazed at what seemed like his utter lack of empathy. On the way out the door was a computer screen with a question: How was the service you received today? Below the question were four faces ranging from happy to angry. Mom hit angry button. Then, she dragged herself out of the building and into the car, scowling.

The first thing I asked when I got her home was, Can I throw no. 1 and no. 2 jars out now?

She said I could. I raced them to the outside trash can and did a happy dance.

After the tube removal, she started to feel a little better, and she relaxed somewhat. She would comment on the area around the stitches, though, and she worried it was infected. It would be a variety of colors: red, purple, pink. And she would question the puffiness. The at-home nurses reassured her it was healing.

Then one morning, she got up, and it was fiery red and quite painful. Seemed like overnight, an infection developed. I called the on-call surgeon who told me to take her to the hospital. The surgeon called ahead, so we didn’t have to wait too long. She was promptly admitted for IV antibiotics. She remained there several days as tests were done to confirm proper treatment. In the morning, they told her she could go home, and I showed up to pick her up.

The infectious disease doctor said, Not so fast. One culture is showing positive for staph. We need to give it another day to grow.

Mom has serious trouble with leaving the hospital after she’s been told she can go. She is known for walking out before the paperwork is done. She gets incredibly impatient. One time, she dialed 911 from inside the emergency room. About two in the morning, I got a call from the 911 dispatch trying to explain to me that my mom was in the hospital, calling 911, requesting to go to the hospital. She asked me if I could go help. When I arrived, Mom said she was just lying there, and nobody was helping her, so she wanted to go to another hospital or be taken home.

It had become standard procedure for me to have a side conversation with the nurse when Mom was admitted. If I couldn’t have a private conversation, I slipped the nurse a note:

My mom is a good patient until she is told that she gets to go home. Then she becomes very impatient and will leave (walk out) before discharge papers are ready. She will even remove an IV fluid tube on her own and anything else that’s attached to her. If the decision is reversed that she needs to stay after she’s been told she can go, she will leave Against Medical Advice. So, please, have everything ready before telling her she can go home.

This time, I was psyching myself up to deal with her stubbornness, but fortunately, I didn’t have to. She was too weak and uncomfortable to put up a fuss. I was glad to avoid the drama but worried about her.

It seemed that every time we were supposed to meet the radiation doctor and schedule the beginning of radiation appointments, Mom was feeling her worst. But we got there. We got called back. Mom was weighed. She said, I’ve never weighed that much in my life! The scale seems to be a surprise every time now. She’d really be shocked to know she actually lost ten pounds from last time. While we were waiting for someone to come in the room, Mom was telling me