The Heartache of Losing a Loved One a Little at a Time …The Dreaded Disease of Dementia

Losing a parent can be an earth-shattering event…I have witnessed the heartbreak of close family and friends losing their loved ones. If you have ever lost a parent, you know the pain can be gut-wrenching. After all, the person you made your very first life connection with is gone. It doesn’t matter what age they are when they pass away; there is not much one can say or do to console you.

Years ago, I attended the funeral of a dear friend whose mother had lived to be almost ninety years old. In hindsight, the loss was not a complete surprise…her mom had been ill for some time. Yet, the sadness in her eyes was very real. My best friend lost her precious mother after a long battle and an extended stay in Hospice care. Even today, when she speaks of her, she is overwhelmed with emotion. More than a decade ago, my husband experienced the loss of the man who raised him-his beloved 92-year-old grandfather, Mr. Joe. Again, while the passing was anticipated, his heart still feels the profound loss when he reminisces about the impact his grandfather had on his life.

My experience with loss is a bit different but heartbreaking, just the same. From the outside looking in, my mom appeared young and full of life, yet there was an unseen struggle. At the ripe age of sixty, she was diagnosed with dementia. As hard as the news was to take in for us, it explained the loss of laughter and the character changes we had noticed over the previous months.

Mom’s Trademark Smile

Our distress began in early 2011 when my youngest sister started seeing the changes. Through the endless line of doctors, diagnoses, and causes that we were offered, our despair continued to grow. That, of course, was the first of many more grieving periods to come.

At around the four-year mark, according to the research, Mom was in the middle stages of the disease. One of the most obvious signs was repeating certain information or stories. Every time she looked out the window of the home she had lived in for almost forty years, she asked the same question, “I wonder who is moving into the house across the street? I think I heard…” When she had a good day, she would tell you exactly who was going to occupy the home and the entire story behind it. The good days, of course, came less and less with time. That was yet another experience of grieving. I realized her body was still with us, but the mother we once knew was slowly and subtly vanishing before our eyes.

At that point, I made the decision to step away from my job. While this granted me time to finish some schooling and focus on establishing my business, it gave me the opportunity to take Mom to her numerous appointments and spend some days during the week with her. She loved to sit outside and, well….just sit. She would sometimes take her purse with her and idly sift through it. If she was inside, she wasn’t always as calm because restlessness often took over. It was quite difficult to get her to sit still and focus on any one thing. While she still danced and sang to songs she loved, her attention span was shrinking. While subtle, there was grief once again.

About a year later, Mom started suffering from fainting and seizing spells. We were at the doctor’s office trying to pinpoint why she was inexplicably falling asleep when it first happened. I was unfortunate enough to be a witness to it that day…yet another moment of deep grief for me. After a few days of chaos, they determined that her heart was dropping to dangerous lows with rates in the teens. They could not definitively tell us if the medications for dementia were the cause. It was a catch-22…she needed the meds, or her mental state would deteriorate even more quickly, yet it could be what was causing her heart to fail her. The morning they transferred her to an ICU room, her heart paused for a whole 11 seconds. Grief, this time accompanied by a flood of other emotions, washed over once more. To resolve the problem, she had surgery for a pacemaker implant. Let me just say things did not get easier.

The first thing Mom did when we arrived home from the hospital was remove her pressure bandage from the area covering her surgery wound above her chest. She was clueless as to the severity of what she had done. The bandage was quickly replaced, but within minutes she removed it again…only this time, she hid it. She had to be watched constantly. My dad, my siblings, and I took turns as caretakers for the day. No matter which one of us was keeping an eye on her, the outcome was the same: utter exhaustion. But we made sure she had supervision until it was safe for her to resume normal activities. Like clockwork, Mom continued to move through the stages of dementia. And each stage brought more moments of grief.

Every month after that carried all the complications and heartache that come with the dreadful disease. When she could no longer care for herself, we were met with more grieving. But, just like Mom had taught us when we were younger, we wiped our tears and did whatever needed to be done to make things work. We knew we needed help. God, in all His kindness, blessed us with one of the best nurses on the planet. While we had several ladies who came on the scene to help, there was none that topped Ms. Marie. She cared for and loved our mother like she was her own.

Late last year, my mother was freed from her battle with dementia of almost thirteen years. The periods of grief between the day she was diagnosed and the day she took her last breath are too numerous to count. We grieved each time she lost the ability to do something for herself, and we grieved when she forgot who we were; we grieved each and every time we lost a little piece of her.

The actual day we lost her was the hardest of all for me. The emotional chaos and confusion in my soul were intense. I had lost my mother years before, a little at a time, as parts of who she was were stolen, but we continued to love and care for the person the disease had left behind. Now she too was gone. It was overwhelming, to say the very least. The part of me that realized there would be no more suffering for her, that there would be no more anxious attachments to my phone waiting on emergency calls, no more dreaded dementia; that part of me understood she was now free, with Jesus and at peace. 

Yet, the part of me that knew I could no longer visit with her, even though our conversations were mostly one-sided; the part of me that would no longer be able to make faces at her to get her to laugh; the part of me that communicated with her caretakers to make sure things were as comfortable as possible for someone with the dreadful disease; that part of me was and remains heartbroken. 

I keep a picture of my mother with me at all times…she is flashing her trademark smile…I am reminded of the strong, sophisticated, and sassy woman who raised me, my brother, and my sisters, before dementia stole her from us. I think of all the gold nuggets of wisdom she shared, the unconditional love she had for us, and the way she believed in us when we did not believe in ourselves.

Today, I am reminded of how incredibly blessed I was to have her as a mother. And though her passing did not catch me off guard, and while I have peace knowing she is no longer suffering, I still grieve. After thirteen years, I can now think about and miss the mother who gave me life and courage, the mother I knew before dementia.

The loss of this beautiful soul, while heartbreaking, pushes me forward. Just like Mom would have wanted, the grieving instead gives me strength and has brought about an even deeper love for the people around me. This, my friends, I believe, is the greatest consolation for deep-seated grief that, by all accounts, seems will last forever.

In honor of her life, I made the decision to use the grief as a springboard to move past my fears, love others wholeheartedly, and do the things I once only dreamt of doing. With the Word of God in hand and my mother’s memory in my heart, I am driven towards becoming the person I was always meant to be.

At the end of the day, it does not matter if your grief came on suddenly or a little bit at a time. The loss of a loved one is gut-wrenching. And the truth is grief has no expiration date. Instead of wishing the days away because our person is gone, we should instead live fully in their memory. While it has been a little over a year for me, there are some days the grief is heavier than others. However, I have found some solace by taking the knowledge and wisdom Mom left us with and fearlessly trying to add my best to the world in honor of her life.

2 comments on “The Heartache of Losing a Loved One a Little at a Time …The Dreaded Disease of Dementia

  1. Maria Plata

    Melissa, thank you for sharing your heart with us. You have always taught me how powerful words were and I hope this beautiful piece on your mother helped in your healing process. While grief is never gone, you have found ways to honor your mother’s legacy. 

    1. jolulabug@aol.com

      Maria, thank you so much for always being such an encourager with your words…such a beautiful gift. The world needs more of this, especially now.

      Writing has helped me tremendously throughout my life. Not only does it a provide a space to record and reflect my thoughts and ideas, but it allows me to process my emotions and make sense of what at times I cannot put orally into words. You are so right, the grief is always there…somedays it can be heavier than others. Remembering the blessing my mom was on this side of heaven, really does help. Thank you again…I appreciate you 🙂

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