I have a list of things I need to do for my mom that is about as long as my arm. Every one of those things involves a minimum of two phone calls that will probably last at least 5 minutes each, and should culminate in an appointment scheduled. The scheduled appointment will mean me having to take time off from work. Every one of those appointments means going to collect my mother from her home, getting her in and out of the appointment, then getting her back home.
It’s a lot just in the steps it takes to accomplish each task–what I need to know about her medical history, the amount of identifying information I have to be prepared to share, and the calendar juggling. But when I get to the part of having to think about what I need to have prepared in order to meet her mental and emotional needs from the door of the memory care unit to my car, then from my car to the doctor’s office, then inside…I can’t. I can’t even type it all out.
I need to have drinks and snacks available for her, but only a certain kind.
I need to be mentally prepared for whatever she’s going to throw at me in the way of her own perception and understanding of what is going on.
I have to be ready to correct her when she accidentally misinforms the nurses and doctors, then gets angry or hurt by my correction.
I have to be ready when the doctor judges me for not knowing something, or for not having taken over my mother’s health quickly enough.
I have to be ready for her to cry when I take her home.
That’s the worst one.
The last time I took her to the doctor and took her home, she had seemed fine. She’d been great. She understood (or seemed to understand) where we were going. Then, as soon as I got her situated and said goodbye, it was like someone flipped a switch.
She went from smiling and happy to sheer terror in a blink. It is really, really hard to push her hands away while she’s clinging to my arms out of fear.
“I only feel safe when I can see your face,” she tells me all the time.
That’s a horrible way to have to live.
I don’t know much about dementia, or about what the brain becomes when your reality receptors are damaged. What I do know is that my mom has regressed to the base fears she always expressed to me in my childhood. What I see is that all my mom’s defenses against her root hurts are peeled back, leaving only a raw, vulnerable childlike mentality.
I can see how much of my mom’s life was just powering through fear–if she could outrun it or find physical ways to hide from it, it was okay. But when that ability failed her…
So, I find myself trying to root out my core fears, and trying to build something different into my son. I always come back to my visit to Dachau, when I stood in the middle of that camp wondering what the survivors saw and where they found the will to live. As a free woman in a prison camp, my perception of reality was different. I found myself wondering what I would have seen as a prisoner–what I would have missed because of my circumstance?
I wondered if I would have missed the beauty of the blanket of snow? I wondered if I would have missed he twinkle lights the sun was making out of the ice covered barbed wire? I wondered if I could have found even the smallest spark of joy–because I believe that is the only way to survive long-term. I made a decision in that place to change my own attitude about a lot of things.
I made the decision to look for the twinkle on the barbed wire.
That changed my life.
When my mom calls me and she’s panicking, I ask her to look around her room, and I ask her to identify something I’ve put in there that I know will spark joy. “Mom, tell me what you can see?” “I see my pictures.” “And you love those pictures. Look at that one of Thor. Remember how happy his smile made you?” “Oh, yes. Oh, yes.” Most of the time, that will snap her back enough that I can talk her down from the ledge.
“You know,” a nurse said to me, “when your mama is getting so upset, I tell her to look around. You have filled her room with beautiful things. You have worked so hard to make her a home. I say to her, ‘Mama, look around you. There is beauty all around you.’ She says, ‘But I only want my daughter. It doesn’t matter without my daughter.'”
It’s what she’s told me all my life. Without me, there is no reason to live. Now, without easy access to me, she finds life so hard.
To my son, I say, “You know, I had a really great life before you came along. You made it so much better! It was like I had a great lamp, but then when you came, I got a better light bulb. All the things I already loved I could see even better. And, I got a better view of things I could clean up and remodel. You being in the world has made me a better person. Thank you.”
And, “Kid, you have to be able to find the silver lining. It doesn’t mean your pain isn’t real. It doesn’t mean your situation isn’t a shit sandwich. It just means that you can do the work of finding beauty. Finding that beauty will give you motivation and reason to work your way out of any situation you are in. And, worst case scenario, at least you can go out with a smile on your face.” (I try to keep it real. No matter how hard you work, sometimes the bad guy wins. Sometimes the best we can do is go out smiling.)
You can’t make another person responsible for provisioning your mental and emotional health. You have to be able to mine your own joy.