Finding Strength in the Long Goodbye of Alzheimer’s Grief

How do we find strength for the long goodbye of Alzheimer’s grief? Amy Elaine Martinez shares about the grueling mix of emotions and weariness of navigating her mom’s slow dying and then her death.

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Hope carries us through the long days of caregiving when we think we can’t face another day. Alzheimer’s disease, often called The Longest Goodbye, is a twofold grieving process. As the mind digresses, the body remains resilient for a time, leaving caregivers in the land of in-between. It’s a wilderness of weariness, like a wasteland of unrelenting, worrisome waiting.

Unfortunately, it seems nothing grows there but disappointment and the drudgery of another day of dementia. It’s hard to navigate both the lengthy process of dying and the finality of death when it comes.

In this lonely desert of saying our goodbyes, time has two faces. Here, we catch a glimpse of both a gift-giver and a thief. With each passing day, we bid farewell to life as we knew it with our loved one, while trying to hold onto the memories we can. This landscape looks hopeless and daunting, yet God promises to carry us through when we let Him.

Will we have the strength needed to walk out this two-fold trial? Is there any hope of learning to enjoy what we must endure before Eternity claims the clock is up for our loved one? A resounding yes is found in God’s Word!

Psalm 84 says, “Blessed are those whose strength is in you, in whose heart are the highways to Zion. As they go through the Valley of Baca they make it a place of springs; the early rain also covers it with pools. They go from strength to strength; each one appears before God in Zion.” (Psalm 84:5-7, ESV) (emphasis)

Two Goodbyes and Two Perspectives

In the long goodbye, caretakers are forced to grieve both the daily dying and the final death of their loved ones. It’s a lonely, misunderstood frontier holding both wasteland and wonder on any given day. These are two very different kinds of grief. In navigating this wilderness, we must choose between woe or wonder in these two unfamiliar territories.

The first one can be a breeding ground for bitterness. If we have a “woe is me” outlook where we feel victimized by our circumstances due to the daily grind, we risk becoming embittered. We become exhausted, blinded by the endless duties we didn’t sign up for, wondering how much longer we can endure. This is where we grieve the daily process of dying.

The second brings an unexpected guilt for experiencing relief at journey’s end. With their final breath, somehow we get a second wind, wishing we could have shown up better, yet surprisingly glad it’s finally over. Relieved by the end of thankless, grueling days of disappointment, we feel a mixture of grief, guilt, and a rush of relief. This is where we grieve death itself.

The thief comes to steal our joy and their memories, but the Gift-Giver is in the house sprinkling wonder-filled moments throughout our days.

It’s our choice. There are two ways through this desert. One sign points to “woe is me” or the better road of “wonders to see.” Hope will carry us through this land of in-between either kicking and screaming where we miss the miracles, signs, and wonders or gently resting on our Savior where He points out the never-ending wonders we might otherwise miss. Isaiah 40:11 shows us God carries His people and leads them through the toughest days.

Jesus will either carry us taking the burden we wouldn’t wish on our worst enemy or like a worn-out toddler, we can resist the rest and drag ourselves through the disappointment of debilitating dementia. Either way, Jesus walks with us. He meets us where we’re at and will make a way for us to pass through.

After a grueling five years of caretaking, my dad, my sister, and I were all at our wit’s end wondering if we had the strength to carry on. We were worn out from the arduous climb, the heavy lifting, and the emotional trek we’d endured. Honestly, Alzheimer’s seemed more difficult than climbing Kilimanjaro.

I remember a particularly difficult day with my mom towards the end of her Alzheimer’s journey. On this day, God graced me with a glimpse of heaven. Hearing my mostly now non-verbal mama sing “Jesus, Jesus, Jesus” over my two-year old granddaughter continues to carry me through the grieving process. God showed me the key to lasting hope. Mom had been singing Jesus over us every day of her life. In every unknown prayer she covered us, in every act of kindness she pointed us to Jesus.

Whereas a seasoned adventurist spends months training for the ultimate climbing expedition, dementia sneaks up on you giving no time for learning the ropes. Suddenly, you’re on a journey with no preparation or skillset to conquer the mountains before you. It’s an uphill climb requiring more than you have to give. Yet, when the mountains seem impassable, God releases hope in our hearts by coming to our rescue. We want to hurry up this long goodbye, but He is making us holy through the process. (1 Peter 1:15-16)

He is our Mountain Mover. He makes a way through our Valley of Baca (which means trouble) as He becomes the mountain pass that carries us through.

Heaven offers us hope amid heaviness. Though the days are long and require a special kind of heavy lifting, what seems hard in the moment produces in us a holiness we wouldn’t have known. There is wonder in this wilderness.

Seeing my mom long for heaven helped me hone in on what’s most important in this life. The hope of heaven is the gift, the inheritance that lasts, the legacy worth leaving. Jesus is what carries us through the longest of goodbyes where in the end, we actually get to say, “See you soon.”