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 stepfather. I rejoice and yet I grieve.

Again.

When you lose someone by 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, her ability to speak words.

You grieve each change, each shade of death. 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.

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 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.

Like a tree

At the end of that work 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, the stumps of three missing trees, and the mulch-like sawdust of the fourth. My husband had enlisted a tree service to remove some dead trees.

One of those trees had stood grandly in front of our living room windows. It had started dying slowly years ago and, like my mother, become a shadow of its former self. 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, but I also inspected it, nervously peering at the branches, trying to determine which way the tree would fall — toward the house or away from it?

It needed to go.

But now that it was gone, I grieved its loss anew. Not the loss of the silver skeleton; I was rid of that gladly. Rather, I grieved the loss of the tree it once was. I forgot the stiff, silver statue that had lost its nobility incrementally. In my mind I imagined the tree’s glory days, tall with strong branches loaded with leaves, shading the house in the summer, showering the lawn with its leaves in winter.

Like 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 that I could see my mother one last time.

Mom appeared to be sleeping, unaware of our presence, curled on her side. I held her hand and stroked her shoulders, telling her who I was, telling her I loved her. 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 alternately chatted with each other or attended to my mom. We were surprised when 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 chatter and the loving chaos my family so often experienced in earlier days. I could only imagine — I definitely hoped — that 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.

Alzheimer's disease
My sister Trish and I with my mom a couple of years ago. She was completely overjoyed by seeing herself on the phone screen, and we all laughed.

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. “

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?

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, and I cried. 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. I do not bear this grief alone.

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.

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?

17 thoughts on “Shades of death: When you lose a loved one to Alzheimer’s disease

  1. So sorry to hear of your Mom’s passing, Sara. Your post is a beautiful tribute to her. Though I didn’t know her, I feel that she lives on in you, and you are a wonderful person, so surely she must have been. Love and hugs to you and your family.
    Connie.

    Liked by 1 person

  2. So beautifully written! I remember your MOM, when we visited! Gracious hostess! Will keep the happy memories ! 💘 Love & Prayers to all the family! Aunt Claire

    Liked by 1 person

  3. Dear Sara Jane,
    I shed some tears with you when reading your Blog on your mom. Beautifully written.
    I can picture her now in the arms of her husband after 12 years of separation. I wonder which came first, into the arms of Jesus or her husband, my brother John. Oh, how beautifully the angels are singing.
    Romans 8:28 tells us “All things work together for good for those that love the Lord.” Amen and amen!!
    Know that I love you, Sara Jane, and I pray the Lord will give you comfort and peace over the loss of your mom.
    Blessings,
    Aunt Joan

    Liked by 1 person

    1. Thank you, Aunt Joan! What a beautiful picture of my mom and dad! Yes, God does work all things together for good for those who love him and are called according to his great purpose. My mom certainly loved him, and I’m so thankful she can love him with all her heart, soul, strength and MIND once again. I appreciate your prayers! Love you!

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  4. Your mom has a beautiful and infectious smile, Sara! Thanks for including her picture on this post—now I see her! Life is sweeter when we share it–thank you for sharing your life & family with me. Blessings on you.

    Liked by 1 person

    1. Thank you, my dear adopted sister in Chirst! I can never thank you enough for giving me your Saturday and driving me so expertly to see my mom. It was a precious gift to me. God is amazingly good, and I am thankful he added you to my family. 🙂

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  5. What a beautiful tribute to your Mother. She was a beautiful person and I am sure you and your siblings know and feel that. Thank God that he has taken her home to be with him and her husband. May all your precious memories help to fill the void in your life now, although you and your siblings have had a void since she started with this disease. May God give one and all strength and love to continue your lives now. Love, Aunt Grace

    Liked by 1 person

  6. A sad story and believe me, I know what you had to deal with although my mother, 90 this year, deaf and suffering from dementia has not totally lost her marbles, not yet. The person she was, her true self: determined, selfless, stubborn and never giving up has gone and just a reflection, a shadow remains. Best wishes, Steve

    Liked by 1 person

    1. Thanks for commenting. I’m sorry you’re walking through a similar journey. It’s tough on your mom and on those who love her, as you know. Best wishes to you, too.

      Liked by 1 person

  7. Beautiful and poignant Sara. I pray the God of all comfort will fill your heart with that comfort. She is still walking around in you!

    Love, Teresa Fletcher

    Liked by 1 person

  8. Sara, My thoughts and prayers have been with you for a long, long time. Your Mom was a treasure and sure she is at ease with Our Heavenly Father, and seeing and being with your Dad and other people she loved. O know you were so proud of your Mom with all her good deeds and accomplishment. And as well, know she was equally proud of you, her daughter. I will be in touch and we’ll talk in the near future. Love you dearly.

    Liked by 1 person

    1. Thank you, my dear mother-in-love! You are precious to me, and your words warm my heart. Thank you for reading and commenting, and I look forward to talking with you soon. Love you more!

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