If It’s Not Okay, Then This is Not the End

Grandpa had dementia for awhile. Slowly his brain began to let him down. He could have an in-depth conversation about his stock portfolio, but couldn’t tell you how to make a sandwich. He could retell in detail the birth stories of his children, but when they walked in the door he didn’t know their names.

A little over a year ago my aunt and uncles agreed to move Grandpa from California to Texas to be near my dad. My family got to benefit from this decision because we live in the same city as my parents.  For the last year and a half, my four girls got to have their great-grandpa at soccer games, and birthday parties. Four generations sat together on Sundays at church.

My girls got to see what it looks like to include someone who functions differently than expected. They practiced serving when it was our turn to pick Grandpa up for church – especially when it meant that our plans for the day were altered or cancelled. It became part of our routine to wave out the minivan windows at the row of memory care residents rocking in chairs with the South Texas Sunday morning sunshine in their faces.

Grandpa loved to sit by my parents’ pool while the girls swam. Or he’d nap in the recliner while the dog and kids wrestled nearby. He dressed up to cheer my oldest at her soccer games. He never missed putting a birthday card in the mail.  

But then he fell and there was a hospital stay and more confinement needed. The girls wanted to visit him in his home, so we made cards and bought candy and wandered the halls giving treats to anyone passing by. One woman pulled my shirt sleeve and said, “You know, I don’t really want this candy, but my mother taught me to always accept a gift with a ‘thank you’ because it feels good to give something to a grateful person”. And she was right, my girls delighted in her gratitude and graciousness toward them.

A few weeks later, there was another fall, and this time Grandpa wasn’t bouncing back. Family began to fly to town to help bare the weight of caregiving. Hospice was called in, and it was time to start saying goodbye.

As family contemplated coming, there was a fear in the back of people’s minds… would Grandpa/Dad even know if I’m there? Will he recognize me? Will it matter to him?

I don’t know how to explain it from a medical perspective… I’m sure there is a term for what happens with our brains at the end of life (even brains that have suffered from memory loss issues), but what I witnessed over and over were holy moments of the veil lifting.

One by one, Grandpa knew people and called them by name. He acknowledged it was time to say goodbye. He had things he wanted done, and boxes he wanted checked.

It brought to mind this passage:

Yes, to this day whenever Moses is read a veil lies over their hearts. But when one turns to the Lord, the veil is removed. Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom. And we all, with unveiled face, beholding the glory of the Lord, are being transformed into the same image from one degree of glory to another. For this comes from the Lord who is the Spirit.

2 Corinthians 3:15-18

In so many ways we all are like a dementia patient… our minds can’t fully grasp the amazing character of God. His glory, his holiness, his justice, his love, his sovereignty, his compassion… Most of the time we have the dimmest of understandings. Occasionally the Lord allows us to see him more clearly (often in the midst of our suffering) and we sense that the veil has been pulled back slightly so that we can understand the God who is caring for us. But then the clarity slips away and we are back to walking in faith… trusting that our dim view is sufficient.

By the end, Grandpa could hardly speak at all. With the help of my in-laws and friends, I was able to clear my schedule and spend extra time with him. One day I asked if he’d like to go outside and he stared at me for awhile until finally he gave a little nod. His professional caregiver got him in his wheelchair and we pushed him along a peaceful path observing the flowers and a chattering squirrel. Then we sat out on the front gathering place for awhile. When Grandpa become agitated, I’d simply rest my hand on my arm and feel him settling back into his seat. We got word that a little church service was going to be held inside, so I asked him if he’d like to go. Again a long pause. Then a brief squeeze of my hand, and we steered him inside.

There was so much he couldn’t do, but his body remembered the rhythms of church. He wanted so badly to stand while we sang. He wasn’t content looking at the hymnal I held, he wanted to hold one for himself. So, like my young girls, he looked at my book and back at his own, trying to find the matching page in his hymnal. Although he could no longer sing, I still traced the words with my finger so he could follow silently along.

Before the service was over I had to leave to get my kids from school. I held his hand and said goodbye. I always told him my name, and he would seem to recognize me but never called me by name… until that moment. He held my hand and said “Marissa”. The veil was lifted for a moment, and it was my turn to receive the blessing of being seen. It was the last time I saw him awake.

Each family member could write their own stories of their times with him those final weeks. Whether they talked to him on speaker phone, or read him letters that Grandma had kept from their engagement 70 years ago, or advocated for his care with the nursing staff, or received the gift of him calling them by name…

It was a difficult and yet beautiful moment in time where we rallied together to sacrificially serve one of our own.

The laying down of our lives for another. The choice to go to the hard places. The realization that by a dying man’s bedside is exactly where Jesus would be sitting… indeed was sitting. The joy of (even in the pain) knowing that this was not really the end.

Nevertheless, I am continually with you;
    you hold my right hand.
You guide me with your counsel,
    and afterward you will receive me to glory.
Whom have I in heaven but you?
    And there is nothing on earth that I desire besides you.
My flesh and my heart may fail,
    but God is the strength of my heart and my portion forever.

Psalm 76:23-26

This morning as I cleaned up my kitchen after my four young, vibrant, healthy children had made a mess of it, I listened to Sandra McCracken sing her song Fool’s Gold. Normally I’d sing along, but my voice caught in my throat and I just nodded in agreement…

The kids are laughing in the other room,

A life more complicated, their smiles are still in bloom

They’re on their own,

Take them by the hand, the best we can

We give them love, we give them love

But if it’s not okay

Then this is not the end

And this is not okay

So I know this is not, this is not the end

The foggy is coming clearer

And I am waking up

The light brings out the shamer of what is fool’s gold, what is love

What was fool’s gold, what is love

But if it’s not okay

Then this is not the end

And this is not okay

So I know this is not, this is not the end

Death is not okay friends. So we know death can’t possibly be the end. Aging, dementia, failing bodies, sickness, cancer, chronic illness… these will not have the final say. Cling to the hope of Christ. He alone gets to say what is finished. And one day he’ll say your tears have come to an end.

Love, m