As I drive the hour to see her, memories and feelings flood the spaces of my mind. I have 63 years of memories. She’s my younger sister, and three years ago she was diagnosed with Early Onset Alzheimer’s Disease.
I’m still not over the feeling that it’s simply not fair. This horrible disease started taking her from us long before the diagnosis. There were signs as far back as seven years ago. Even though our maternal grandmother had the disease for seven years, I didn’t recognize the signs. We were young then, and I didn’t yet understand what Alzheimer’s really looked like.
A powerful mix of emotions flows freely every minute of every day. Our parents are gone. It’s just Nancy and me now – we’ve sadly called ourselves orphans since Dad died three years ago. Nancy, particularly, disliked the feeling of being an orphan. She was always incredibly close to our parents, both logistically and emotionally.
She and her family shared a yard with them for over 23 years, their houses just feet from each other. She spent most of every day with them for most of her life. But all that doesn’t matter now. Her memories are gone. The parts of her mind that once held our shared life are gone. She no longer recognizes anything or anyone.
The Final Stage of Alzheimer’s Disease
In her final stage of Alzheimer’s, friends and family come to see her. But they don’t recognize her anymore either. She’s just a tiny shell of who she was. We sit together with her and share memories, often crying. But she doesn’t know.
We hold her hand, brush her arm, rub her back, and stroke her head. But she doesn’t seem to know. Still, we do it because the books say somewhere in there, she is comforted by our presence and touch.
For three years, I’ve kept a book on my family room end table called The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss by Nancy L. Mace and Peter V. Rabins. It’s supposed to be like a Bible for these conditions. I have read it, but now I mostly use it as a resource. It says to spend time with your loved one because they know. So, I go visit Nancy several times each week.
I decorate her room with a new blanket and décor items for her dresser for each season. I put a small wreath on her door to brighten things up. Does she know? I don’t think so, but Nancy always decorated beautifully and loved holidays. And it makes me feel better.
The drive to the Memory Care Home, and back, is something I never imagined doing for my younger sister. No one can fully understand the emotions that flow through my body, mind, and soul.
I am angry.
I am full of questions.
I am heartbroken.
I am blessed for having a sister.
I am thankful for my memories.
All of these emotions, combined with 63 years of memories, can easily overcome me. And some days they do. Sitting at a stoplight, tears may flow freely so I pull into a shopping center to have a good cry. Then I’m on my way again.
Experiencing Anticipatory Grief
Recently, I learned there is a name for all that’s happening on my journey through this horrible disease. It’s called anticipatory grief. Anticipatory grief is a deep sadness and emotional pain you feel when you know a loss is coming, often due to illness like cancer or dementia. It begins long before death. It’s a quiet mourning – a numbness about what’s changing – as you prepare for the inevitable. Anticipatory grief is a sign of deep love.
Learning about anticipatory grief has given me a bit of peace. It’s given me permission to feel what I’m feeling.
It’s important to recognize the signs of anticipatory grief and take care of yourself as you walk this path with a loved one. Nancy and I loved to spend the day together getting our hair done, having pecan pancakes for lunch, shopping at Hobby Lobby for hours, and then finishing the day off with Rita’s. She was so much like our mom; as soon as she got in the car she’d ask where we were eating and which Rita’s we were going to. Then we’d laugh and talk about Momma for a bit before heading off to our hair appointments. We haven’t been able to do that for the past seven months. I am still mourning those days, and so many others.
Grief is not a linear process, nor is anticipatory grief. Some days I am able to accept that loss. Other days feel impossibly heavy and I spend hours in bed.
As we get closer to the day she will leave us, my emotions feel heavier. Thankfully, my husband has been patient and loving through this process. For some reason, this feels harder than losing our parents. I’ve wondered why.
But recently, the reason became clear.
A Lesson about Survivor Guilt
When we lost our parents, 11 years ago and three years ago, we went through the journey together. It was both of us. We shared the same, or similar, emotions and held each other up during the journey of anticipatory grief and ultimate loss. Plus, once they were gone, we still had each other.
Once Nancy is gone, I won’t have another sister. It will just be me in my grief. No one else can understand what it’s like to lose my sister, Nancy.
She’s a wife, a mother, a MiMi, a friend, a sister-in-law, and a daughter-in-law. But she’s no one else’s sister. Just mine.
I already feel guilty. Why am I outliving her?
I am very angry. How will I survive without her?
It’s not fair. Why am I going to be the only one left?
Luckily, I am not alone. I have my husband, our children, their spouses, our grandchildren, and wonderful friends. But I won’t have my sister.
I’ve learned that this is part of survivor guilt. It is a normal but painful response, stemming from a sense of unfairness. Combined with a feeling that I should have protected her, and I don’t deserve to be here when she isn’t, it’s a deep loss of our unique bond. It’s normal. But right now, it doesn’t feel any better than anticipatory grief.
Final Thoughts
So, these hour-long drives to the Memory Care Home to sit with her give me time to sit with my anticipatory grief and all my feelings. I don’t know what my feelings will be like when she’s gone, but I know it’s important to take care of myself right now.
I’ve talked to my Primary Care Provider, and she has expressed concern about how this has impacted me. She continually reminds me that I need to get plenty of sleep and eat properly. She reminds me that I need to take breaks and lean on my family and friends. She tells me to sit in quiet moments and feel my emotions, instead of denying them.
So, this is what I’m doing as best I can.
Let’s Have a Conversation:
In this stage of life, many of us are walking similar paths. Have you experienced anticipatory grief? How have you learned to live with it? Before this, had you heard the term? Does it help to know there is a real term for what we experience?