The Longest Day 2018
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Julie's Story
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Julie's Story

My mom was diagnosed with AD seven years ago. Until about three months ago, we were able to keep her relatively content. Then in March, she suffered a compression fracture in her back due to osteoporosis. Since then, the disease has progressed at a devastatingly fast pace.

It doesn't help matters that she is on heavy-duty pain medication, but we can't let her suffer physically as well as mentally. My father, her husband of 59 years, who she doesn't recognize and doesn't like, is with her during the days. My sister and I have been taking turns every day going to their house immediately after work and spending the evening and night. My daughter has recently joined the rotation, and that helps tremendously.

My sister and I each get two days off in a row now, which gives us time to recuperate emotionally before our next shift. We sleep with Mom because she needs help getting up and down from bed. She also will wake up to use the bathroom, but doesn't know what to do when we get her there. Thankfully, she is sleeping better at night now. For several weeks after her hospital stay, she was up 20-30 times a night. Due to her injury and the medications she is on, she is very unsteady on her feet; she needs to use a walker. She hates this and can never remember how to use it. We are in a constant battle because she is very restless.

We can't keep her down because she is always searching for something, but her communication skills are so diminished, we don't know what she is looking for. Taking care of her physically seems easy now compared to trying to care for her emotional needs. She is just so unhappy. She wants her Mom and Dad, and they have been gone for years. She wonders where her brothers and sisters are and thinks they are all still children. She seems to know we are familiar, but doesn't know we are her daughters and granddaughter. She is frightened most of the time, and we sit beside her and hold her hand to try to calm her. Sometimes it helps; other times it doesn't. I miss her the most when I am with her.
My daughter wrote the following tribute to Mom and her words capture our emotions so well:
The disease has been waging war on her brain for well over six years. It has coiled its tentacles around and through each lobe, quietly stealing away her memory and reason. With its cold, calculated maneuvers, it has sought to deconstruct her completely...and it is beginning to accomplish its goal.

She looks up with nearly blank eyes that once twinkled with an overwhelming sweetness. Those eyes now search frantically for something - anything that feels like a real moment; anything that feels like a real memory.

Where once spread a smile that conveyed such a warm beauty, she now smiles the saddest smile one can imagine - the smile of frenzied desperation; desperation and fickle hope that this simple physical expression will manifest into reality, and she will have a moment of real happiness again.

Carefully rouged and powdered cheeks are now replaced by tired skin, sallowed and drawn from worry.
Perfectly painted lips are now replaced by a constant grimace of confusion.

The beautiful voice that once sang hymns in praise of her God now waivers with her age and despair.

The hands that have raised and nurtured five offspring and have lovingly taken care of a tidy home now shake and clasp in anxiety.

With her eyes and her voice and her small hands, she searches. She searches to find her way back from the painful past in which she is perpetually trapped. She searches in desperate attempts to determine where “now” truly lies. Her eyes strain to see beyond sight for a path back home through the abysses of time and space.

As she looks to me for answers, she seems less like my grandmother and more like a frightened child wanting the comfort of her mother's arms. I steel myself against the sadness at seeing her appear so small, for I must be her rock. I must be an oak under which she can seek shelter from this tumultuous storm of emotion and sickness. I fasten myself to the very core of the earth so that I may become the ground upon which she can walk in safety through her dark shadows.

Her maelstrom of confusion is punctuated by brief moments of lucidity. The secrets are housed deep within where even she cannot always find them. But when I bend low to hug her, our gazes meet, and I see the spark of recognition in her eyes, far back behind the foggy glaze of time. From that distant place, she looks right into me; right into my core, and she knows I am of her own blood.

Now it is night. I lie beside her as she sleeps silently, and I cannot help but wonder where she goes in dreams. Is she happy? I close my eyes and imagine her as I remember when she was still truly my granny. As I drift off, we are outside in a summer garden. I am young, and I am dancing, and she is smiling at me. We are back in a time where she still calls me “Sugar” and tells me not to get too far from the house. I tell her I will never go too far away, and her carefully rouged and powdered cheeks spread into a smile of such warm beauty. Her eyes twinkle with an overwhelming sweetness as her perfectly painted lips form the words; as her beautiful voice sings songs in praise of her God. Her hands are strong and sure as she lifts me up…and she can remember everything.


Alzheimer's Association

Our vision: A world without Alzheimer's disease®.
Formed in 1980, the Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research.