Through Her Death I Learned to Live

It was Christmas Day 2011. A day that my life changed. Forever.

It started out as any ordinary Christmas Day. The only difference was I wasn’t bringing anything to the Christmas family dinner that day. By request.

My son and I were getting over the stomach flu and really….no one wanted to eat anything we had to offer. I had to chuckle to myself. Great timing on my part!

We piled our 2 boys (ages 5 & 7) into the car and drove the 20 minutes to my mother-in-law’s house. Just like any other Christmas. Our kids were bubbling with excitement over the gift exchange.

I secretly wondered what my stomach could handle after my stomach could handle after the flu I was getting over. I didn’t know: Would it be just mashed potatoes for Christmas dinner?

But I was focused on us. My family. Our wants and our needs. I was excited to see family, but it was only in retrospect that I would realize how self-focused I was that day.

The Walk Through the Door that Changed My Life

We were giddy with excitement as we walked up the sidewalk to my mother-in-law’s house that day. Snow covered the frigid ground. Christmas is so much fun when you have kids!

We rang the doorbell. A family member let us in. Still, I was focused on my world.

Then I saw it. I saw her.

I hadn’t seen my mother-in-law, Linda, since Thanksgiving and there was nothing on that day that prepared me for what I saw on Christmas Day 2011.

It wasn’t so much what she was doing, but what she wasn’t doing. It was also how she looked: all hunkered over like an old woman. Not the lively mother-in-law I knew and loved. It was the fact that each breath looked painful. Walking across the room seemed like a chore.

What was happening? Was I dreaming?

You see, she wasn’t just my mother-in-law. She was so much more. I had a difficult childhood and married at a later age. I wasn’t sure I should even marry since I knew little about being a good wife and mom after what I had grown up with.

My husband convinced me that we would be great together. It took me 2 years to even accept a date with him because close relationships scared me. But he was different. He saw something in me I didn’t even see in myself.

And in a way that only God can, He provided my husband’s mother to teach me so much about what it was to be a good wife and mother. She was one of my best friends. We moved back to my husband’s hometown in 2007 just so our kids could grow up near her. So I could see her more often and learn from her.

But December 25, 2011, I knew immediately something was wrong. And not in a “she’ll get better” kind of way. No, something told me something was really, really wrong.

I looked around to meet the eyes of family members to see if they were seeing what I was seeing. By the time we got to the car and left, I was nearly in tears, and my husband, normally not very observant, was, too.

We called his sister, a nurse. Yes, she noticed, too. Something was certainly wrong.

The Coming Months

My mother-in-law slowly realized that something was indeed wrong. She became convinced if she went to North Carolina, where she was from, and breathe in the ocean air, she would get better.

Sure, escaping the cold Michigan winter was not a bad idea. But we weren’t sure it was the best idea.

She went anyway. During those 2 months she was gone, she slowly started losing the ability to use her hands. She started falling. She said she just didn’t feel good.

As soon as she arrived home on March 30, 2012, my husband met her in her driveway (a friend had driven her home) and immediately rushed her to the ER. From the hospital he asked me if she could come and stay with us for a after she got out. I happily agreed.

When she got to our house, I knew deep in my heart she would never be able to take care of herself again. I was dressing her and fixing her hair. Sometimes a home health aide provided by Medicare bathed her. Sometimes I did.

But we still didn’t know what was wrong. The doctors shrugged their shoulders and sent her on her way.

Thankfully, my husband had a friend who was a neurologist at the University of Michigan, the best healthcare provider in the state. By that connection, what would have taken 6 months for an appointment was reduced to a 2 day wait.

The Diagnosis

It came through a text that I got the news. My husband simply said, “They think it’s ALS.”

That is, Lou Gehrig’s disease. A friend had died of it a few years before of it. We knew it was an awful disease where you lose control of all your muscles but your mind stays fully intact. We also knew there was no cure and really no treatment.

ALS patients suffocate when they die. The muscles in their lungs cease to work eventually. But they never lose their mental abilities. They know everything that is happening.

Could this really be happening to us? Could we really lose her? Did she have to suffer this way?

They gave her a year to live but I secretly, as the one who was taking care of her, suspected it would be much less. She was declining so rapidly. I could see changes each day.

While my mind knew what was happening, my heart never fully grasped it.

She came back from that doctor’s appointment and told us to put her in a home so I didn’t have all the responsibility of taking care of her.

Putting Everything on Hold

There was no way I was letting her go to a home. But she was rather insistent. Then one day I said, “I’m afraid you won’t be here at Christmas. Can you please let me take care of you as a last gift to you?”

Normally a stoic woman, she looked at me with tears in her eyes and agreed. I was later told every time she told that story she cried.

There were so many reasons I wanted to do take care of her. She gave me my husband. She had been a role model to me. I loved her dearly. I also think, deep down, I thought I could prolong her life.

So that was that. I had an online business that required quite a bit of care from me. So I shut it down. I stopped everything, including taking field trips with my kids, so I could take care of her.

It was now early May 2012.

I didn’t mind stopping my life. While I’m normally a pretty laid back “sit down and read for 2 hours” kind of person, she was not. She was always on the move. I became her hands and feet. Now, I was always on the move.

I was doing nearly everything for her, including putting her eye makeup on. This was a challenge since I don’t even wear make up! I cooked food she could eat and cut it up into small pieces. We moved things around and added things to our home to accomodate her.

I was doing my part to keep her alive.

She was prescribed a machine to help her breathe at night. This meant she required 24 hour care, as everything about the machine bothered her. My husband, normally at work during my daytime shift, took much of the nighttime care. It wasn’t because I didn’t want to, but mainly because I was so exhausted that I slept through the cell phone ringing at night with her pleas for help.

Happiness…In This?

One day, as I was fixing her hair, I realized I was happier than I had been in a long time. I had suffered from migraines in the few years before her illness and had a good dose of depression thrown in there to accompany the relentless pain.

But, they had gotten better, and taking care of her gave me purpose and meaning. I knew my time was limited and for the first time in my life I was going to enjoy every second of every day.

Without ever speaking a word, she taught me the most powerful lesson of my life: Embrace life. You never know how long you or those around you have left. Don’t leave a second where you aren’t focused on love and happiness. There simply isn’t time for anything else.

So I lived a month like that. Taking care of her. Enjoying every moment. Welcoming visitors that wanted to see her, as she had touched so many lives. It’s odd to say you’re happy when you’re taking care of a dying person, but I truly was.

The Decision

Then, one day it wasn’t so easy. She could no longer get out of bed. She only weighed 98 pounds by this time but I pulled so many muscles in my back I couldn’t stand up straight or walk without a limp.

One day, without thinking, I just matter of factly, told my husband I needed to go to the doctor to get painkillers for all the pain I was in from lifting her. Not taking care of her never crossed my mind.

I would live to regret those words for many months to come.

A few hours later, my husband called his brother and sister to say it was time to put her in a facility. They agreed.

I was the only one who disagreed. I felt like a piece of me was being ripped out. I protested.

But I was not her child. They were and I was outnumbered. I felt like I was breaking one of the biggest promises I ever made.

The End

So, that was it. She moved to a hospice facility that could take care of her better. It was a beautiful place with an excellent staff.

But the guilt I felt was terrible. Had I let her down?

She lived 11 days in that facility. Then, one day right after speaking to her and stroking her hair, she took her last breaths.

It was over.

I looked outside and wondered how I would ever go on with the guilt of her leaving us so soon while coping with her death and helping my husband and children deal with it, as well.

Life felt like an uphill battle for several months. Waking up each morning. Putting one foot in front of the other. Crying while I did everyday tasks.

No, it was not something I ever want to re-live. Over the next few months, we would suffer a few other unforeseeable losses that knocked us to our knees. But nothing was as bad as losing Linda.

But Then the Sun Started to Shine Brighter

I’m not sure when it happened, but one day in the fall I felt better. I still had some bad days but something was different inside of me.

Stronger. Feeling like I could face anything. I felt resilient for the first time in life.

Something was still missing I would discover over the next year. After growing up in a challenging environment, life always felt hard. Then it felt much easier after I married my husband. Then it got hard again. But then it was easier.

Yet, what was missing?

Happiness. True joy. I had the strength I needed but these two things were eluding me. I actually set out to study them.

How does one become happy? I knew first hand it wasn’t going to come knocking on my doorstep.

I had to look for it. It wasn’t going to find me. I had to find it.

First, I knew that simplifying our lives would go a long way. I was tired of always feeling like I had so much responsibility. So much stuff. So much to do every day.

I wanted to change that so I could embrace what was truly important to me. What I never wanted to lose. The things that were most dear.

What was left? My faith. My family of a great husband and two wonderful kids. Extended family that supported me in life. Not everyone fell into that category so I had to draw some boundaries with some people that were preventing that happiness that had eluded me most of my life. That wasn’t easy.

I also had a few friends that were gems.

Amazingly, I found virtually no value in the physical possession we had.

So we got rid of about half of our stuff. We gave it mostly to a refugee center for people who were escaping a country where they were tortured. I gave them much of my crystal from my wedding. It served no purpose. I never used it. Why not give it to someone who had nothing and would cherish it.

We also gave some of the stuff the refugee house didn’t need to a homeless shelter. Instead of being sad of parting with our stuff, I was happy. Yes, happy to know it was going to people who truly needed it. All of it had become a weight in my life. Something to clean and maintain that took my focus off of where I really found happiness.

It’s been a year and half since Linda died. So many things in our lives have changed dramatically. One thing is that I feel truly happy.

It’s a daily journey though. I even started blogging about this amazing discovery. For me, simplicity and happiness go hand in hand.

But it never would have been possible had I not gone to the depths of my soul in grief and back again because of taking care of her and losing Linda

Through her death, I learned to live. Through her death, I learned to hope. Through her death, I learned to be happy.

Photo 1/2 by Casey Muir-Taylor