The Caregiver Support Group said it would be good for me to keep a journal. Here is my latest entry:
My Caregiver Life
It’s the most underrated job and yet the most intensely compassionate job I can imagine. She says I don’t do anything all day, yet I am 100% present and engaged as her life support. Nearly every day, I repopulate her memory with the names of people she loves, how she met her husband, where they lived for decades, who she was, and how she got to this point. No one knows exactly what it’s like, but they all think they do. I am insanely appreciative of the people who just recognize that this is really hard. It’s the most frustrating, rewarding, gross, tiring, mind-bending, sad, funny, altruistic, challenging job I have ever had.
I am constantly amazed at how fragile our mind is and how just a small degree of mental loss can make us completely debilitated and unfit for typical human interaction. Our ability to worry how others see us is one thing we tell people to get over, yet, not being able to see how others see us can make us quite uncivilized. We have no idea how narrow the band is of acceptable behavior until we watch someone with dementia live their daily life, or worse, become unraveled.
On days of what I call ‘machine gun questions,” you are a hostage. A question comes every four to six seconds for hours and hours. That’s nine hundred questions an hour. Often, it’s just a rotation of about ten questions. Do the math. That’s answering the same question, on average, ninety times an hour. You can never look annoyed or it will be noticed and cause a meltdown. It’s easy to say, “Oh, I can handle it,” until you try it. Then somewhere around eight or nine hours later, you find yourself googling if this is actually a form of interrogation torture that is surely banned in some peace treaty.
I have learned you can’t have a logical argument with someone whose ability to follow logic is lost in a mirror maze. All you can do is distract them with bright flashing lights (No kidding here: flashing lights really do a number on her. But, general redirects are good, too.).
There are times that, as an introvert, I feel stuck. I can’t be by myself. I must always be at her side. I must always be available for the questions. If I go to my room to be alone, she follows me. She will even follow me into the bathroom. Sometimes I just want to be alone to hang out in my head, but that is taken as a slight against her. Due to her inability to have empathy now, she is very self-absorbed. Even if she does something bad, if you get mad at her, she gets offended. Sometimes I do get mad at her. Sometimes she is hurtful. All you can do is fake it. Hold in the anger. She will never understand why you’re mad anyway. There is no mending of a relationship or compromise. You just have to let it go. I’m not sure if that qualifies as forgiveness. Whatever it is, it’s like holding a grudge against a mountain. You’re the only one who cares.
It helps that I feel like I am in control. I know that this will continue only as long as I can handle it. I can pull the cord and stop this train. I want to keep going though. I don’t want her to have to go to a nursing home. I do think that on her good days, she is aware that she is vulnerable. She desperately fears the nursing home. I know this is the best care for her. This is the only way she will get one-on-one care all day. So, I keep going. I don’t know what tomorrow will be like, but I can make it one more day.