No Easy Solutions When Dealing with Dementia

LIVING BETTER

Should real life challenges be brought up in the classroom? It’s funny what they choose to teach us in school.

We learn algebra and fractions, how the mitochondria are the powerhouse of the cell – and if we’re lucky — some practical life skills like cooking, taught in Home Ec.

But the hard stuff – the stuff that keeps us up at night – is tiptoed around.

Teachers walk on eggshells when a student suffers a death in the family. Teens aren’t taught strategies for emotional regulation. The list goes on.

They test us on our knowledge of anatomy but never mention human grief – or how to let ourselves move through those natural emotions.

Neither do we learn about healthy relationships when studying sex-ed.

Maybe it’s true that there are some things we can only learn by experience, or from our peers and our parents. Outside the classroom.

I find myself considering the bag of flour some of us were made to carry around for a week, as if it were a baby, to instill in us a surface-level understanding of infant rearing.

In the same class, we were never told that one day, it might be our parents who need to be taken care of – and that we would be the ones doing the caregiving.

I learned this lesson not in a classroom, but in the summer of 2015, when I moved back to San Angelo to care for my Grandad. That year would teach me more than a classroom ever could.

Things are Different at Home

As a child who was largely raised by my grandparents, I looked to my Grandad as my primary father figure for most of my life.

He was a constructional creative – always looking for the next thing to build or fix.

He always had his trusty boots on, and his sleeves rolled up, and never shied away from hard work.

I used to sit outside and watch him work in the yard, a greasy red rag in his back pocket, and in the front, his trusted Marlboros – “Cowboy Killers” he called them. The cigarettes lived up to their name eventually – Grandad was diagnosed with COPD in his early seventies and was denied a lung transplant due to his age and health. His health went downhill from there.

Nana had called that summer – she needed help.

It wasn’t like her to ask for help; our family tends to be a stubborn, prideful bunch — I could tell this was serious.

During this time, Nana still worked full-time as the director of nursing for residential care home.

She was busy working 12-hour shifts a lot of the time. She didn’t have time to stay with Grandad.

And it wasn’t just the COPD, which had rapidly started making his breathing worse and impacted his mobility – it was also his mind.

Something happens when your brain doesn’t get enough oxygen. Things start to change.

Your mind loses its capacity to think as it normally would. We were told by the doctors that Grandad’s dementia would only get worse, and they were right.

My first month in the house, things seemed fairly normal.

I would occasionally have to help Grandad get around or remind him to get his Cup’o’Noodles from the microwave.

But gradually, things changed.

By the second month, his favorite noodles weren’t just left in the microwave – they were all over the house.

He would make one, set it down, forget about it, and then make another. I would follow him around to keep the house clean.

He no longer worked away at his projects.

He would often leave his tools on the ground and walk off muttering, dust and grout still caking the living room floor, the dogs following behind him.

I would stay behind and put his tools away, knowing that later I’d have to do it again.

He’d say it was because he was fed up with the job, but I knew him — it’s because he couldn’t remember what he was doing.

It wasn’t just his projects that were confusing – Grandad also started mixing up his relationships.

Some days, I was his old business partner, Lee – the one he ran the car shop with in Ballinger. Or sometimes, I was his hotel attendant, and I needed to get these rooms cleaned up or he was going to tell management and have me fired.

On the good days – the really good ones – I was myself. His granddaughter.

The one he taught to ride a bike on the sidewalk outside of our old house. The one who used to sit on his lap and drink chocolate milk while he had his morning coffee.

But those days were now few and far between. And it was only when I hugged him and closed my eyes tightly that I could feel the same presence as the flannelled man who band-aided my knees after I fell.

Now it was I who tended to his wounds.

Life with Grandad was a busy thing. He always kept us on our toes.

Nana and I would sometimes wake to find him rummaging through the kitchen at 2 in the morning.

After he passed, we sat on the floor of his closet together and cried. And laughed.

We found a box of all the scissors in the house — all taped up.

We had wondered for months where all the scissors had gone.

Grandad still found ways to make us smile after he was gone.

Family came from across Texas after his passing to pay their respects, and when they’d ask how he was in that last year, Nana and I would just look at each other. It was hard to explain.

A friend of mine commented after his funeral, “If you need to cry more, it’s okay.”

But that was the funny thing – I didn’t feel like I had more tears.

Sure, I cried some while reading his eulogy and while sorting his belongings, but the truth is that I’d had an entire year to grieve for my Grandad.

Nana and I watched firsthand as he slipped away right in front of us.

The last three days were the most painful. He no longer seemed to know himself.

In those final moments, though, surrounded by family, I believe he knew who he was. His eyes were bluer than they’ve ever been, and I believe he remembered.

I felt the contractions of my heart suddenly still, and Nana’s hand closed around mine, tightly.

The room felt different, cold. It was quiet aside from the pitter-patter of his small dog’s feet, and then – birds outside the window, singing a surprisingly hopeful song.

Then, an unexpected feeling washed over me – relief.

I breathed it out like warm air after a summer storm.

Nana and I looked at each other, knowingly. And we both understood.

He was no longer confused, no longer searching for something he couldn’t remember or find. He was finally at peace.

Dementia isn’t something that you can ever fully prepare for. And seeing your guardian like that – the one who once cleaned up after you – it can be confusing. It can be hard.

But, when you have a relationship like mine and Grandad’s, it’s worth it to return the favor.

There are a few things I wish I knew going into it.

I’ll keep it simple and sweet – there’s so much one can only learn by being present in those moments.

• You matter: self-care isn’t selfish. It’s okay to find happiness while your loved one’s mind slips away. Taking care of yourself is a necessary act – it will allow you to continue to take care of them when they need you. And don’t forget to be gentle with yourself. There is no one-size-fits-all approach to caregiving – you don’t have to be perfect and everyone is unique and requires unique care.
• One day, it will end: this isn’t forever. After Grandad’s death, I found myself looking around, lost. Who was I without his shuffling feet in front of me? What was my purpose? Don’t forget that, as uncomfortable and scary as it might sound, there is life after dementia and even after death.
• Remember, this is still your life – and theirs: life, the curious little thing, is more than the muscle memory of everyday life. It’s more than knowing who you are and chasing that dream career. Sometimes, life is messy. It’s weird, it’s colorful, it’s confusing, it’s hilarious – but it’s always us. It’s always now. And it’s always changing. Your best bet is to roll with those changes.

They never taught us about complex grief or caregiving in school. But my Grandad sure taught me. And it’s a lesson I will never forget: that every moment is worth cherishing – even the ones we won’t always remember.

— Chrysanthemum Crenshaw Cohen covers a wide variety of topics for The Concho Observer, and has an extensive background working to improve social services and animal welfare.