My Grief through Dad's Alzheimer's

Anticipatory grief occurs when a loved one is given a life ending diagnosis or when we come to understand that they are declining and will not recover from any cause. It’s important to understand that this is a normal reaction to their anticipated death. We grieve for them long before they physically die. I experienced anticipatory grief when my father was diagnosed with Alzheimer’s Disease. I share my story in the hope it will help someone who is on this difficult journey.

My dad was the best man I’ve ever known. He was honest, ethical, hardworking, humble, and so very caring. He was a big, fit man who was still walking three miles twice a day on his treadmill at age 75. He was very humble and quiet and always stayed in the background drawing no attention to himself. He was the rock of our family.

One of the things I admired most about Dad was his brilliant mind. When he began to have lapses of memory I attributed it to his advanced age. Before long, it became obvious that his cognitive issues were much more serious.

When he started repeating questions and telling me about the same things over and over again, I knew in my heart he had Alzheimer’s. When the doctor confirmed the diagnosis, it became very real. My dad looked the same, but he was becoming a very different person. I grieved the diagnosis and his decline.

I knew intellectually that I couldn’t stop the progression of the disease or save his life, but I tried. I realize now I felt as if I stood between my dad and death, and I fought his decline and death for a very long time. New medications, therapies, and cognitive exercises all failed. The first time he didn’t recognize me I sobbed my heart out. From this point on, the game plan changed. It was no longer about saving him. It was about salvaging as much of his dignity as possible and keeping him safe and comfortable. I grieved the death of the hope I had for slowing the progression and saving his life.

As he continued declining, I had to adjust my definition of dignity. He moved to a wheelchair and then diapers and then came the fetal position. My smart, strong dad transformed into an infant in a man’s weak, dying body. I grieved for him and all he had lost. And I grieved for me as I helplessly witnessed his decline.

When he died, I was relieved for him. He would have been mortified if he had known the state of his body and mind. I was also relieved for me because the battle and the constant surrender were finally over. I grieved my “Alzheimer’s dad” but I had difficulty remembering who he was before Alzheimer’s. Months later, the memories of my strong, brilliant dad began to resurface, and I found myself deeply grieving the dad I had known before this heartbreaking disease stole him from me. All of who he was came rushing back and I grieved him in a very different, much deeper way.

Through this difficult journey, I discovered how little control I actually have over most of what happens in my life. I learned to surrender this false sense of control and to respond as the unknown unfolds. I discovered that although love is strong, some things are stronger and cannot be changed by love. I learned how beautiful it is to return the love and care my dad had always shown me.

Life’s most important lessons often come through difficult times. I’m grateful for all I learned on this journey and for the best dad anyone could ask for.

Dancing in the Rain

As I reflect on how I’ve lived my life, I realize I’ve often tried to change, or fix, life’s circumstances.  I think I’ve finally come to understand life is often “unfixable”.  Simply put -- it is what it is. 

Please don’t get me wrong.  I still have faith and hope, but I believe it takes greater faith and hope to live within our circumstances than to be rescued from our circumstances.   

I’m a huge believer in dancing in the rain. You see, I don’t think life is about waiting for the storm to pass.  There’s no doubt the rain will come.  It may come as a gentle shower or a raging, torrential storm, but rain is going to fall into each of our lives. It’s about learning to dance in the rain.

We can ignore the rain and pretend it doesn’t exist, but we’ll still get wet.  We can hold our naive, “it can’t happen to me” umbrella high above our heads, but eventually a storm will blow it away and we won’t just get wet, we’ll get soaked.  Or we can embrace the rain even when it batters us to the core. 

We each dance in our own way and in our own timing.  Our dance may start slowly and each step may be brutally painful.  We may have to stop and rest, but we’ll get up and dance a little longer the next time.  The music may be inaudible, but one day melodic notes will emerge again.  Undoubtedly, the lyrics will be different, but the music will play and our dance will go on.

Life is what it is.  The storms will surely come, but we can learn to dance in the rain.

The Cowboy

He had that Texas swagger as he ambled down the hallway quietly tipping his cowboy hat to everyone he passed. He had a kind face and gentle eyes. I had been at my mother’s bedside for three days and nights determined to keep my promise to be with her when she died. I was exhausted as I leaned against the doorframe of her room. He was a welcome change of pace for my tired eyes and breaking heart.

As I turned to take my post once again at my mother’s side, I heard, “Excuse me, mam.  I’m looking for Mrs. Kirkland. Is this the right room?”

Surprised he was here to visit my mother, I responded, “Yes, you’ve got the right room.  I’m her daughter.”

“Ma’am, I hope you don’t mind, but I attend the Cowboy Church and we’ve been praying for your mama and your family. We’re so sorry she isn’t doing well.”

 I struggled for words but managed to thank him for his thoughtfulness. There was something about his quiet voice and his calm spirit that touched my heart. He was a total stranger and had never met my mother, but here he was humbly standing beside me sharing my pain.

We were interrupted by a nurse who needed to confirm the name of the funeral home we had chosen for when the time came. I walked down the hallway to talk with her and left my new friend standing inside the doorway. The conversation took longer than I expected and I was anxious to return to my mother’s room. As I got to her door, I’ll never forget what I saw.

Kneeling beside my mother’s bed with bowed head, gently holding her tired, little hand, cowboy hat placed over his heart, he silently prayed for her. He didn’t utter a sound, but his silhouette in that darkened, quiet room is etched in my memory forever. 

After a time, he lightly kissed her hand and stood to his feet.  He put his big cowboy hat back on his head, gave me a sweet smile, and with tear-filled eyes, left the room.

This humble cowboy taught me that when our hearts are broken, we don’t need words. We simply need the silent presence of a kind soul who will take our pain upon themselves and carry it with us if even for a moment. May we all strive to be that kind, silent presence.

Am I Grieving the Right Way?

What is the right way to grieve? What if I grieve the wrong way? These are questions that are asked quite frequently after the death of a loved one. Most people want the quickest, simplest route to “get over” their grief. They want the secret formula, the blueprint, the ordered steps so they can be certain they are grieving correctly. They want to be sure they aren’t grieving the “wrong way”.

Grief is like a fingerprint. Everyone grieves differently. The death of a loved one isn’t simply copy and paste when another loved one dies. So even our own personal grief for the deaths we mourn is different and very individualized. We grieve to the depth of the relationship. The deeper the relationship we have with the person who died, the deeper we grieve.

Some feel they aren’t grieving enough because they think they should be more emotional. They aren’t paralyzed by their mourning as society has wrongly taught them they should be. They are sad, but they continue to function. These instrumental grievers deeply grieve the death of their loved one. However, they process their grief internally through their thoughts as they have every other loss they’ve faced throughout their lives. They, in fact, are grieving the “right way” for them.

Others think they are grieving the wrong way because they cannot gain control of their emotions and stop crying. They have difficulty functioning and are often unable to make decisions or to ground themselves. They may feel disconnected from their bodies and may not be able to focus or organize their thoughts. These intuitive grievers process their grief through their feelings as they have done throughout their lives. They are grieving the “right way” for them.

Grief is a wilderness that takes each person on a different path. There is no defined map that leads out of the wilderness. The journey takes each person through different turns, valleys, storms, and sunrises. However, there are two important guidelines that are imperative in our quest to grieve the “right way”. First, don’t hurt yourself. Secondly, don’t hurt anyone else. Hold tight to these two guidelines and give yourself permission to grieve the way you naturally grieve. Be patient with yourself. Grief is a marathon, not a sprint. Your journey may seem endless, but you will eventually find your way out of the wilderness.

Hugging the Cactus

Embracing grief is like hugging a cactus. It’s big, filled with sharp barbs and excruciatingly painful. Some choose to walk around the cactus. Others turn and run the other way. Some stand in place, close their eyes and pretend it’s not there. No matter how hard we try to ignore it and how intimidating it is, hugging the cactus is the only healthy way to make our way through the wilderness of grief.

Hugging the cactus is not for the faint of heart. It takes courage to walk up to it, wrap our arms around it, and hug it with all our might. It takes unbelievable strength to continue to embrace it even when the pain demands that we let go. It takes immeasurable discipline to fight the temptation to release it and run as far from it as we can when our hearts grow weary.

Somewhere along the way when we least expect it, the cactus morphs into a teddy bear. The intensity of our grief lowers and the pain becomes more manageable. We finally can breathe a little easier and find relief in hugging something much softer and more comforting. Sometimes we’ll find a thorn in the teddy bear. They are painful, but much less debilitating than the sharp barbs of the cactus.

You will make your way through the wilderness of grief, but the journey begins by hugging the cactus.