Shades of Death: When You Lose a Loved One to Alzheimer’s Disease

Just when you thought you’d grieved your last…

The day before Mother’s Day I visited my mother on death row. She slept through my visit. She was imprisoned not by crime but by her failing mind.

Her “death row” was that incremental death by Alzheimer’s disease I call “shades of death.”

Last night, my mother slipped from death row into life everlasting. I know she is with Jesus, and her body and mind are intact and perfect.

I know she is with my dad, my sister, her mother, and her stepfather. I rejoice and yet I grieve.

Again.

The deadly progression

When you lose someone to Alzheimer’s, you lose her progressively. Both you and the one you love experience shades of death.

Just as colors vary in shades, death varies too. Each progression into the disease is a degree of death.

You grieve when your Alzheimer’s patient loses her perception of what’s real. You grieve when she loses her ability to care for herself. You grieve when she loses her home, her memories, her ability to read, her ability to comprehend language, and her ability to speak words.

You grieve each change, each shade of death.

Shades of death defined

You grieve with her when she initially despairs at what she knows is happening.

You grieve when she admits she pretends to remember because she doesn’t want to appear rude to others.

You grieve when she becomes paranoid. You grieve when she no longer knows she should be paranoid.

You grieve when she has no idea who you are.

You grieve when she has no idea who she is.

The call for Hospice

The assisted living facility where my mother resided called Hospice the week before Mother’s Day. Then I feared I’d lose her on that holiday; ironically, I lost the woman with no memory on Memorial Day.

Hospice joined the death row team because my mom wasn’t eating or drinking on her own and was often unresponsive. She remained where she was but got regular visits by Hospice and the nurse practitioner on staff.

My phone was aflutter with texts flying back and forth between me and my siblings. The end was near we knew then. At last.

The too-slow progression

My mother had been slipping away for more than 10 years.

Gone was the wonderful mother, seamstress, writer, Sunday school teacher, professor, pie baker, sharer of long conversations, and better advice.

We all wanted her freed from the shell of a body that held her captive.

Frankly, I wanted her to pass from this world to the next.

So sadness surprised me

So I didn’t expect to feel sad.

But after the exchange of texts with my siblings regarding my mom’s move to Hospice care, I went into a co-worker’s office and started to cry.

Later, a different co-worker came to my office, looked at me, and said, “What’s wrong?” and I started crying.

A different co-worker came to my office, and when my eyes welled with tears — her eyes did too.

A metaphor for Alzheimer’s

At the end of the day, I cried myself home.

As I drove, I wished I had a pad and paper to collect my thoughts on paper at stoplights. I tried to conjure a great metaphor for “death by Alzheimer’s,” something about your loved one getting kidnapped by an evil party who brainwashes her so much that she can’t remember who you are or, worse, who she is…

It seemed imperfect.

But when I got home, I saw a metaphor in a pile of tree debris sprawled across the front lawn. My husband had enlisted a tree service to remove four dead trees.

One of those grand trees had graced the view from our living room windows. It had started dying years ago and become a shadow of its former self.

Like my mother.

Shades of death for a tree

The glorious laurel oak had become a silver skeleton.

Even dying, the tree had stood strong and tall through Hurricane Irma and numerous winds and rains since. Increasingly, bits and pieces of its limbs, some larger (and more damaging) than others, broke and fell, sometimes hitting the house.

It made me sad to see the tree deteriorate for its own sake, but I also worried how its decline might impact us. Would it fall? Toward the house or away?

It needed to go.

A good finality, but still…

But now that it was gone, I grieved its loss anew.

Not the loss of the silver skeleton; I was glad to be rid of it. Rather, I grieved the loss of the tree it once was.

I forgot the stiff, silver statue that had lost its nobility incrementally. Instead, I remembered the tree’s glory days — tall, strong branches loaded with leaves, shading the house in the summer, showering the lawn with its leaves in winter.

Just as I miss the mother I once had.

That afternoon, I looked around at the younger oaks in our yard, wondering how many in our wooded landscape were descendants of this once fine tree.

A family of trees.

My final visit with Mom

A few days later, a dear friend took the time to drive me three hours south on love-bug-infested highways so I could see my mother one last time.

Mom appeared to be sleeping, unaware of us, curled on her side. I held her hand and stroked her shoulders, telling her who I was, telling her I loved her.

Telling her goodbye.

My mom looked peaceful, shockingly gaunt, her thin skin discolored. Though she seemed to ease her hand into mine, she never opened her eyes.

Shortly after we arrived, my sister-in-law and my niece joined us. We chatted with each other or attended to my mom. Then my sister’s son and daughter and her two sons also arrived to see Mom.

This portion of family was a beautiful sampling of my mother’s family tree. Four generations of her descendants surrounded her bedside that day.

The morning flew past with the loving chaos my family so often experienced in earlier days. I hoped the chorus of happy voices might reach a part of my mother’s brain that remembered those days too.

Hope in grief

I had intended to bring along a picture of my mother so that my friend Kathy could see my mother as she had been, rather than the shell she had become. But I forgot.

The following week, as Kathy and I exited the gym locker room together, she asked me to keep her posted on my mom’s condition. I told her I would.

“You said you were sorry that I didn’t get to meet your mom,” Kathy had said, turning toward me as we reached the gym’s exit. “I have met her — by seeing you and your family members Saturday. “

The final ‘shade of death’

This morning, the day after Memorial Day, I arrived at work, knowing I had a lot to accomplish before leaving for an international conference this coming weekend. I knew I’d be doing my “full-tilt boogie” all week in order to prepare.

I didn’t have time to grieve.

But when I reached for my phone to authenticate my logins on my work computer, I saw the texts.

My mom had died.

A good thing.

A joyful homegoing for her; another onslaught of grief for those who loved her.

The final shade of death by Alzheimer’s disease?

In this, I have hope

This afternoon I drove home in the hot, unrelenting Florida sun. I called and left a message to one of my aunts to let her know Mom was gone.

I cried.

Just as my fat tears hit my lap, a fat raindrop hit my windshield.

“Thank you, God, for sharing my grief,” I had to exclaim at the sight.

The rain appeared — as if God were crying with me.

“Let it rain, Jesus! Let it rain!”

And it did.

This is my hope: I do not bear this grief alone.

A new beginning

During those final years that my mother lived, she was separated from those she loved by the failing of her mind. Though I could drive hours to see her, I could never reach the woman she was.

She was a prisoner of Alzheimer’s, out of reach though physically within reach. On death row.

And though this seems to be the final shade of death, it is my mother’s entrance into that new world where Christ is — and where I will see her again.

Therefore, I can say:

Death, where is thy sting? Grave, where is thy victory?

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