A Thief Called Dementia

Wide awake at 3 am. The dogs are hogging the bed. My husband is snoring, and my right foot is dangling off the side of the bed as I hug my pillow to keep me on the mattress. I realize my body is hovering on the edge like a coin on the coin drop machine at Dave & Busters. I am about to fall off the edge. One more push and I will roll to the floor. Sleep has been elusive for the past few months. Is it because I have become a coin in an arcade game or the stress of current circumstances? Maybe my post-menopause gifts are to blame. All of the above? The result is my morning routine is off.

I am dwelling on a call I missed yesterday morning. My call was scheduled at 6 am to catch up with a good friend. Because I was up half the night, I fell into a deep sleep after Todd left for work at 5:30. The friend called at 5:59 am (while my phone was still on DND). I was sound asleep. My DND turns off at 6. If only she had called a minute later, I would have answered. Such is my world right now—everything is off by a minute.

I recognize there is goodness in my life and gifts in this season I may be missing. I am grateful for the good, but the past few months have been heavy and challenging. My in-laws have experienced challenges with their health. Most recently, my father-in-law was hospitalized due to heart issues. The gaping holes in their care plan came to light. It was a gift in the darkness. 

Todd and I have spread ourselves thin filling holes that are not fillable by us. As Emily’s primary caregiver, the time I can devote to caring for my in-laws is limited. I have been making them meals, taking them to medical appointments, and working hard to prevent adding additional stress to my husband. His anxiety and stress levels are hitting critical in this period of unrest and uncertainty. I am burning out trying to juggle things that were never mine to carry in the first place.

We have found and hired extra care to come into my in-law’s home to help care for my mother-in-law and reduce some of the caregiving burden from my father-in-law. Feel free to judge me for using the word burden. I get it. I struggled to find another word, but the fact is, this thing called Dementia is an ugly beast that strips the ability to care for oneself and puts that on another person. It is a burden that one person cannot carry long-term, especially if they are in their late 80s with health conditions of their own.

The cost and stress of having strangers in the home 20 hours a day is taking a toll on my father-in-law. The fact that he cannot care for his wife alone fuels his guilt. It is painful to witness, and also, I get it. I see him and understand. I watch him pour his cocktail a little earlier every day, and I see him. I understand. Until you are in the position to be the lifeline for someone you love, you will not understand. I have been in his place. It is different, yes, but I see him. All the emotions you carry as you fight for and care for someone who can no longer do it for themselves is taxing. The physical tasks are exhausting. Asking for and requiring help creates pain and guilt because you cannot carry the burden solo.

Emily has always been disabled. She has always needed care, and we have grown into the role of increased care. We have slowly journeyed together as her care increased. 

Dementia came on fast and suddenly. It quickly stole my mother-in-law’s abilities. Almost overnight, her ability to communicate effectively and walk was taken from her. That is a tough pill to swallow. I watch my husband, his brother, and my father-in-law struggle as they watch the woman they love slip away a little at a time. She is there, but she isn’t. Flashes of the woman I remember come through like flickering lights. It is hard. It is painful. It is devastating.

This week, she will be transitioning to Memory Care. As the family discussed it with her, she answered in a childlike voice, “I don’t want to go.” It broke me inside. It broke all of us because we didn’t want her to leave either. We believe this is best for her and my father-in-law, but it doesn’t make it easy, and it doesn’t feel good.

My mom always said, “Sweetie, life isn’t fair. Get used to it.” As we work to ease the transition, I will take my mom’s words with me. I will continue to show up to the best of my ability cause isn’t that all we can do? I hope and pray that the transition improves the situation. My rubber band has been stretched to its limits, and my mind, body, and soul need a break.