I used to love summer. I loved the sunshine, the blue skies, and the endless possibilities that freedom and imagination could bring. I loved summers and I loved my grandfather — the two went hand in hand. Summers with grandpa meant big red tomatoes pulled fresh from the vine,  popsicles on the front porch paired with deep discussions about life and the state of the world. 

At 2, I was grandpa’s shadow. At 3, I thought grandpa could cure anything. At 7, I thought he was Santa. At 11, he was the smartest person alive, and at 14, my world came crashing down. 

 

My mom said Alzheimer’s. I said it wasn’t true. Then he forgot my name for

the first time. I ran up the front steps of the worn red brick house that I knew

so well and there he was, dependable as a sunrise on the chair just outside the

door. A green work shirt and a black corduroy cap with Alaska embroidered

on the front.

 

The pins that he collected glinted in the afternoon sun, it seemed so normal.

 I rambled and he was quiet, a look of confusion was where a look of understanding used to be. My stomach dropped. This wasn’t right and then he said it, “What’s your name?” 

 

With Alzheimer’s, there are good days and bad ones. When it’s good, it’s great. There is clarity in their eyes and you can almost pretend they aren’t slipping away bit by bit. When it’s bad, you don’t recognize them anymore. 

“I always knew first thing in the morning if it was going to be a good day or a bad day if his eyes were clear it would be                                              a good day if they were cloudy it would be a bad day,” my mom Kristen Burns-Darling said.

                                     

                                             People suffering from Alzheimer’s or dementia can become very agitated and sometimes                                                        volatile. There can be a lot of confusion and certain things can tip them into episodes.

 

                                            Alzheimer’s can be broken up into three progressive stages according to  alz.org. With early-                                                 stage Alzheimer’s the person can still function on their own. They might have some memory

                                            lapses like remembering names. My little sister was born before the diagnosis and my                                                            grandpa had a hard time remembering her name. Once, my grandpa was on the phone with                                                  one of my great-aunts and he had to ask me what the baby’s name was. Jami was probably                                                    six-months-old at the time. 

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                                            Middle-stage Alzheimer’s is the longest period sometimes lasting for years. This can come with the inability to remember information, they need more help to function and they can have personality changes that can come with delusion and compulsive behaviors. At this point, my grandpa would shred napkins or tissues, he would become very agitated and often angry especially with my older brother. My brother looks quite a bit like my grandpa’s father who walked out on their family after my grandpa was born and there was still resentment and he would take it out on my brother. 

 

 

There were times he would mistake my mom for my grandma Barbara who passed away in the ’70s and then he would think that my little sister was my mom as an infant. There were still good days at this point, passing moments of clarity that I didn’t realize was that precious. 

 

Finally, the late-stage of Alzheimer’s, this is the end. They need round the clock care,

they can’t communicate in the way they did before the personality changes.

 

There were days I would come home from school or practice and I would spend an

hour convincing him to drink the high protein shake, Ensure, so he wouldn’t starve.

 

The nurse was there every day providing the care that my mom and I couldn’t.

In this stage, they can become very vulnerable to infections and other complications.

This is the point where we lost him. 

 

When the diagnosis came out, he deteriorated quickly. And it was not just his mind.

His body began to shut down too. The last six months of his life were the worst six

months of mine. 

 

“I did not understand what I was asking of my family or myself when we moved

home to take care of my father,” my mom said. “I did not understand the sacrifice I was asking of my husband and my kids. I would do it over but I wish I was better educated in what it would be and what it would look like.” 

 

 

 I knew every line on my grandpa’s face, every wrinkle, each expression, down to a mole in the middle of his forehead where it met the bridge of his nose. I knew my grandpa until Alzheimer’s crept into our lives and changed what I knew. 

Alzheimer’s affects more than five million people, according to alz.org. It is the sixth leading cause of death in the United States, and between 2000 and 2018, deaths relating to Alzheimer’s increased 146 percent. 

I lost my grandpa on Aug. 20, 2011.

 

It was a Saturday morning. Gram and I were in judo. It was gray outside. It felt like it had been that way all summer. The receptionist at the gym bustled into the room and immediately made his way to my grandmother. She made eye contact with me from across the room and I felt a tightness in my chest, my heart dropped and I knew. 

 

For the next week, my world was foggy. I received, “I’m so sorry...” “Your grandpa was a good man...” “He really loved you...” in various combinations, over and over again. I was reminded that he was “in a better place,” that he was “no longer sick,” or that “he must be dancing in heaven.” I smiled and nodded

blindly accepting the hugs and pats on the shoulder. He was laid to rest a

few days later.

 

I sat outside the church on the day of the funeral and just picked at the grass.

It was sunny and warm, not a cloud in the sky. I wanted rain and clouds.

I wanted the world to be angry too. I sang the Marine Corps Hymn,

I heard my voice echoing off the church walls I never looked up. This was the

very first song he ever taught me.  

 

Grandpa always talked to me like an equal. We often would dig up new

projects from the depths of the garage where they had been collecting dust.

My grandpa was a Texas native, a product of the 1930s who believed the

greatest calling was serving your country. He was an old fashioned man with

old fashioned values who reminded me that I was capable of anything.

He was my best friend. 

 

After the funeral, I sat on the well-worn brick of the back patio and stared.

I went back to the day I planted my first tomato plant. I sat on the ground

with a pot between my legs, there was more soil on me than in the pot, but I was

doing my best to complete my task. Grandpa sat back in an old wooden

chair, his hands resting on his cane as he nodded his head and gave out instructions on the best way to care for the plant I was transplanting.

 

I smiled at the memory and tilted my head back to catch the afternoon rays on my face and I just let the tears run. The sliding glass door slid open and my grandmother sat down next to me. She didn’t need to say a word she felt it as deeply as I did. All I wanted was to go back to summers with fresh tomatoes and melted popsicles.