When Caregiving Chooses You

My mother was an independent, strong-willed, vibrant 71-year-old living in Florida. She lived with my Aunt Mary, was a fantastic cook, loved to decorate and go out.  Then the flu landed her in the hospital and after that, our lives changed forever.

While in the hospital, Mom was diagnosed with a benign brain tumor. I felt relieved they had found and removed it. She would often point to her head and say “See, this is where my tumor was, but I’m fine now!” But she was not fine at all. My Aunt Mary began to see subtle changes in her behavior. I had no idea that she would not recuperate and be independent again. I thought life would go back to normal. Little did I know that Mom and I were just beginning what was to be a long journey with many twists and turns.

Something was wrong…

Mom began to forget anything to do with numbers, like her phone number, home address, and my phone number. Mom and I talked every day before I went to work. But I noticed her calls began to slow down. Aunt Mary would call and give her the phone, or I would have to call her. She also stopped cooking, which she loved to do, and cleaning up after herself. Mom was very immaculate with everything – when she began to let things go around the house, I knew something was wrong.

She also became irresponsible with money. She began to loan money to people, give it away, or accuse people of stealing it. So Aunt Mary took over paying her bills, and gave her a weekly allowance. As you can probably guess, she did not like this and would call me saying, “It’s my money! I don’t need anyone to pay my bills and tell me how much I can have a week. I can do with it what I want!” This became an uphill battle for both of us for years to come.

“It’s my money! I don’t need anyone to pay my bills and tell me how much I can have a week. I can do with it what I want!”

Mom was a very sociable person. She and my aunt belonged to a club that met every month at a member’s home to play poker, bid whist, and to socialize. She began to need help playing the card games and soon stopped playing altogether. She would interact with the other members but only watch the game. She would say she wasn’t interested in playing but wanted to visit with everyone.

Mom was always on the go. She loved to shop and eat out. But after the surgery she became more restless than usual and did not like staying home. She would go out to ride the bus every day, rain or shine. When the weather was bad, Aunt Mary tried to get her to stay home. Aunt Mary would call me so I could try to persuade her not to go out in the rain. We’d agreed that she would not go out when it was raining and be home before dark each day. One of her favorite lines was “I can go where I want, when I want, and come back when like!” Now, Mom was always one to speak her mind, and to say she was a bit stubborn is putting it mildly. But she was becoming more difficult to reason with and, if possible, more stubborn! While I expected things to be better after the surgery, they were getting worse.

“I can go where I want, when I want, and come back when like!”

 

Denial… Mom doesn’t need a caregiver

As Mom’s behavior and memory begun to get worse I found it difficult to accept the changes in her. My brother lived close to her but whenever there was a problem, I was called. One day Mom did not come home until well after 9:00 p.m. My aunt called my brother and me. It was after midnight in California – I was 3,000 miles away and had no idea where she could be. As usual, my brother said to keep him posted. He said he didn’t feel any need to drive down and help look for her. Not only was I upset with him for not wanting to check on her – I was afraid.

What I could do from here?! I found my imagination running wild with all kinds of possibilities I suggested to Aunt Mary that we call several of her bus driver friends and ask if they had seen her. I was on my second call when Aunt Mary called to say Mom had returned home. Mom’s reply to our worries? “I’m grown, you can’t tell me what to do! I don’t see why y’all are so upset! I’m fine! I can take care of myself!” She had decided to go out to dinner with one of her bus driver friends, but did not see the importance of calling home to let my aunt know her plans.

“I’m grown, you can’t tell me what to do! I don’t see why y’all are so upset! I’m fine! I can take care of myself!”

My brother and I spoke to Mom and told her how afraid we were when we didn’t know where she was. She agreed to not go off on her own anymore without letting someone know where she was. The next day Aunt Mary called to say she could not continue to care for Mom. I started to cry.

Why was all the responsibility falling on me?

What was I to do? I called my brother and he told me he couldn’t take care of her because he was working. He had a family to take care of. I kept trying to believe that Mom would get better, but she didn’t. I hoped that my aunt would change her mind. She didn’t.

My other aunts and brother said it was my responsibility to take care of my mom. After all, I was “the girl” and better equipped to do so. I wasn’t married and had no family responsibilities. Really?! I had a full-time job that required me to work late, on some weekends, and included extensive travel. What was I going to do with Mom when I was working? Why was all the physical and financial responsibility of Mom’s care falling to me? After all, she was my brother’s mother, too! Why didn’t my life matter? I’ve since learned that caregiving often falls disproportionately on women – daughters, granddaughters, sisters, nieces.

If I said no, what would happen? Aunt Mary could no longer care for her. Aunt Mary was older than Mom and had a heart condition. I tried to negotiate with my brother for equal time between the two of us but he declined. I refused to put her in a facility. I felt alone, scared, frustrated, and angry.

Not ready to be a caregiver!

When caregiving chooses you, no one congratulates you or throws you a party for stepping up to the plate. I did not want to take on the role of caregiver. I was not ready! I was being thrust into a situation that would not only change my life but that of my Mom. As much as I wanted to believe that Mom would help me with this process, it wasn’t to be. I finally realized that my mom who I had looked to for comfort, love, and caregiving was no longer the woman I once knew. I had to accept that my mother was changing and there was nothing I could do about it. Our roles had reversed. I would have to go to Florida and move my mom to California.

There were so many things to consider, so much to do – find a new place to live, move, and prepare the house for her arrival. Find a place for Mom to go during the day while I was at work. Research resources, senior centers and what they offer. Find and arrange for transportation to the senior centers she would attend during the day. Then I had to go to Florida, pack up all her belongings, and tend to all the little things you never think of until they become an issue.

Mom really does need me

In Florida, seeing how dependent she had become convinced me that she needed me. She was always meticulous and now she would pile her clothes on the floor. (When we were children, she always made us hang up our clothes as soon as we took them off.) When I asked why she did this she said, “I don’t know,” with sadness in her voice. I cried but tried not to let her see how upset I was. It was a blow to my heart. As I packed she went behind me and unpacked the boxes. When I caught her one evening, she smiled and said,

“I don’t want to move and leave my friends! You need to move here to be with me!”

The time for denial was over. The move was happening and both our lives were changing. I found myself on the verge of panic. How was this going to affect my job? What was I going to do with Mom when I returned to work? Would she like her new home and could I trust her to be home alone?

I found myself wondering how I was going to work and take care of Mom on a full-time basis. I needed guidance and help. While I was screaming on the inside I had to take hold of myself and find what organizations were out there and how they could help me! Our journey was just beginning, and what a journey it was going to be.

To be continued…

Written by Crystal Rivers

Crystal Rivers is a Meeting & Event Manager based in the San Francisco Bay Area. She has worked in the White House and for many large corporations. A former dancer with the world renowned Alvin Ailey Dance Company and the National Ballet of Washington, DC , she has a Master’s Degree in dance therapy and still exhibits the grace, strength, and courage of a professional dancer. Crystal became her mom’s sole family caregiver in 2004, providing a safe, loving home after her mom’s health began to decline. She relied on her spiritual faith to sustain her during her years as a caregiver and hopes that sharing her story brings comfort and support to others caring for older adults. Her mother was a Center for Elders’ Independence PACE participant for 10 years, until her death in 2015.

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