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The Wheels On My Bus Went Flat



Mom’s dementia took a drastic decline a few days ago. For the first time ever since her diagnosis, her confusion and angry outbursts have become an around-the-clock occurrence now. Mom is not, nor has she ever been, combative towards anyone. She is not outwardly violent in any way; however, she is anxious, upset, and sad.

Before COVID-19, I would visit and call regularly. Now I have to rely on the staff at her Residence to keep me informed, which they do. I asked her caregivers if she was headed for Memory Care now. Thankfully, according to them, she is not. Memory Care requires “wandering,” they tell me, but Mom is not wandering, another thank God. I did request an increase in her anti-anxiety medication. The nurse agreed and said they would also do lab work to receive more needed information, and they would keep me posted on the results.

Usually, a UTI (Urinary Tract Infection) is the cause of this kind of behavior. However, the nursing staff said they had already deduced this recent behavior is not from a UTI, rather it is from a decline in her Alzheimer’s.

Mom has experienced these episodes of severe depression and confusion for about a year now. They were intermittent at first and happened only within certain hours in mid-afternoon. When she had these solemn, lost moods, she would see my mobile number next to her phone and call me with many of the same questions each day. “Where am I?” “I don’t recognize anything.” “Where should I be?” “What should I be doing?” “My brain feels confused. Why is this happening?” I would always answer these calls and talk her off the ledge as best as I could.

The frequency of her phone calls escalated in the past six or eight months. The time in between her calls increased to every half hour, including some in the middle of the night. I had to make the awful decision to pull the power on her phone. This was devastating for me. I was not only cutting my connection to Mom, but to her friends and family as well. However, we all understood. We all knew that Mom, within minutes, no longer remembered our visits or phone calls. Because of that, I felt, at this point, it was okay to take her phone away.

After that, I went about making new signs and posters to tape (up) around her apartment. They read; “You are safe in your apartment.” “You are where you should be.” “The dogs and I love you and we will see you later today or tomorrow as always.” “I will give the pups a treat from grandma!” The last sign I taped was on her phone. It read, “Out of Order.” I then quietly unplugged the power to her phone. . . and my heart.

WHAT IS TRUE FOR ME

Almost every day now, it feels like I bury bits and pieces of Mom’s and my relationship. I have been digging and throwing dirt on its coffin and saying goodbye for the past 12 years. The grave won’t be filled until it is over – and who knows how long that will be?

What is hard for me is knowing Mom is suffering continuously. What is excruciating for me is not being able to talk to her whenever I want now. Disconnecting the phone did not affect Mom the way it affected me. She is not aware we have not spoken since I pulled the plug on the phone. Nor is she aware I have not visited her. She is not even aware of the COVID-19 pandemic that has turned everyone’s world upside down.

I am at least grateful that Mom’s latest decline does not extend to her knowing how gut-wrenching this is for me. I know that would upset her even more. I am also grateful she has no retention of her own emotional suffering.

I lean on friends who loiter in my metaphorical funeral parlor, friends who are experts at holding the lantern while I dig. Their wisdom reminds me that my journey with Mom’s dementia is out of my hands. I am reminded to put it in God’s hands. That the right and perfect solution is out there, and it will make itself known. I am reminded that Mom’s dementia is MOM's process. It is about her, not me. My job is to love her and to be sure she is safe and provided for. I am reminded if I get in the way of that, it will not serve either of us well. I am reminded I have my OWN process to pay attention to.

More than ever, it seems like I am following the guidance of the Serenity Prayer: Accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

forgive & forget

A CAREGIVER'S RESOURCE

FOR DEMENTIA

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