I held you tight today. Not like I normally hold you – but tight – so tight that you couldn’t move your hands or your head. Tight so that the doctor could clean your ears and you would be able to hear again. Over the last few weeks, you’ve lost the rest of your hearing due to earwax. For most people this is bad news. With your sightless eyes and dementia, it leaves you in sensory deprived darkness yelling “I can’t hear you!” when you hear faint noises. You started lashing out at everyone – and understandably so. You didn’t know what was happening. Random people would intrude on your silence and darkness for unknown reasons.
Over the last few years, I have told anyone who comes near you that you are to have agency over as much as possible – even when that devolves to decisions about fish or chicken for dinner. I teach each one of your caregivers to speak slowly and clearly and then… wait for an answer… no matter how long it takes.
Then today I had to violate my own rules. The first part was easy. Getting you out of bed, changed into warmer clothes, wheelchair to the car and sitting in the car were all manageable. As I drove, I gave you water and asked you to take a pill that would take the edge off the ear cleaning. Nope. It was too bitter you said. Then you held onto the small cup like it was the last belonging and your most treasured possession.
Once we arrived at the doctor’s office parking lot, you were so far out of your comfort zone that you refused to get out of the car. I cajoled, spoke loudly into the ear that seemed to work better than the other. I finally begged the practice nurse to have the doctor treat you in the car, but she said it couldn’t be done.
I steeled myself. Marched out to the car and, after you refused to move and insisted on staying in the car and wanted me to close the door, I picked you up and transferred you to the wheelchair. I wheeled you in: parking lot, ramps, sidewalk, office door, door to hallway into the examination room. When the nurse spoke to you I’m not sure if you ignored her or didn’t hear her. I think that with familiar voices you try hard. Otherwise, you ignore them. We left you in the wheelchair and when the doctor came in, I knew there was one way forward: hold your hands tight. Hold the top of my head against your head so that it wouldn’t move too much and repeat over and over again as you struggled and shouted that the doctor was cleaning your ears so that you could hear again.
Dementia is a strange beast. As he worked, your hearing came back little by little. You still struggled, but now could respond back to me. “It hurts!” “I know, mom. He’s cleaning the wax out of your ears so that you can hear.” “Not much longer now” I’m not sure how many times I said “Not much longer now” as the small pile of ear wax slowly piled up on the tissue. Yes, it’s gross. Having a constantly distraught mother is much worse.
It was bad enough that over the last few days, I’ve had to unilaterally pour in ear drops when you were on your side in bed. I didn’t ask permission. I’d stealth drop liquid in and then step away. It would take multiple visits every day to get enough drops in so that the doctor’s visit would not be even more painful. And I felt horrible doing it.
I felt horrible holding you down today. No agency. The last time I remember doing something similar is raising babies where I had to hold them as I put eye drops in when they had pink eye.
And then a miracle happens. You can hear again – and I get my mom back. On the way home, you recognize my voice. Call me by name. Ask where we are. Where we are going – you even knows you’re in San Jose. And you beg me not to leave you alone when I bring you to your home. “I’m blind” you say. “I know, mom. I won’t leave you. I’ll take you in and make sure you are safe.” I text ahead and when I arrive, the caregivers are ready to let us in. Your food has been kept warm and you sit at her usual spot at your usual table. Your reach for her food and I leave you in a contented state. I hug you, kiss your forehead. Push back your hair. “I’ll see you tomorrow.”
Her caregivers heave a sigh of relief. I … am a wreck. I am full of guilt of not following my own rules – and knowing that to do so would leave you in bad shape. These are the tough days. The days we aren’t heroes. We do what needs to be done with as much love and compassion as possible.
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Two days later, I check in with you. “How do you feel now we went to the doctor and cleared your ears out. Is it better for you.” You use your emphatic voice, “Oh yes. Much better.”
Whew