The many lighted windows of the front cars flash past us like decades, the brakes on the wheels screech to a halt, the doors slide open; here is the train come to take us home.
January 3, 2012, Tuesday: Emma, my mother, 97, residing in the hospital bed in our living room, has arrived at the final stages of dementia. For a decade, I have been her sole caregiver, unpaid.
Early this morning, before the sun rises, I am awakened. I hear Emma: “How do I get to the subway?” she wants to know. I go downstairs to her. The room is dark but for the weak glow of the night light at the surbase in the adjoining hall.
My imagination shivering in fear at what I will find, I gather around myself my cloak of strength, threadbare now, enter the room and switch on the light.
Emma has thrown off her covers and skewed herself around in bed so that her head is between the rails on one side and her legs through the rails on the other. She is a tiny thing, five feet tall, weighing under 80 pounds. She looks like a holocaust victim. Yet, I have difficulty shifting her. I succeed in dislodging her, finally, straighten her body, pull her down in bed. I cover her up. I climb the stairs and crawl back into bed. Quiet. Then, “Where is the subway? How do I get home from here? How do I get home from here?” I descend the stairs. She is sitting up, uncovered. “Here: take a drug” is not my normal way out. What should I do? Emma has become agitated again.
Emma grew up in Philadelphia, Pennsylvania, living in her West Philadelphia childhood home until she married in 1939 and lived in the western Philadelphia suburbs. Regularly she donned hat and gloves and rode the elevated train and subway into town where she worked as a secretary, or to shop or meet with friends.
The Atavan waits on the sill between the living room and hallway, waits for me to transport it to her. I have already measured the proper dose into the dropper. All I need to do is administer it. Our healthcare aides have told me that in nursing facilities they tie down agitated patients with duct tape or bungee cords. Scenes from movies of confined, supposedly insane people – mostly women – flash through my mind – old scenes captured in documentaries of patients being given lobotomies suddenly light up, black and white, like a gargoyle on a subway wall when the headlight of the fleeting train flashes on it.
What does Emma see? Where does she think she is? Lost in Philadelphia this time, trying to find her way home. Lately, she has been calling for her mother. It is sad; maybe it is scary for her. She has almost reached the end of the line. What triggers her images? What makes her brain run these thoughts? They must run like a movie trailer.
I pick up the bottle. I unscrew the top holding the dropper. I approach my mother in her bed. I remove the dropper and aim it at her, moving closer. “No,” she says. “No!” She tries to push me away. I gather her wrists in my free hand so she won’t pummel me. She breaks free. “No,” she says. “I don’t want anything to eat.” She compresses her lips. “All you have to do is stick the dropper inside her cheek,” our medical team has said. “The medication is designed to be absorbed into the gums.” O.K., I’ll try again. I collect her wrists. She breaks free. I stand back. I look at her mouth. I’ve administered medicine from a dropper to dogs and cats. Surely, administering it to Emma should be easier, especially easier than to cats. I am so bumbling at this; imagine me as your nurse. I touch her cheek, her mouth, trying to open it. I aim the loaded dropper at it. I get it open. Quick. I get the dropper in and squeeze the bulb. Click! Emma clamps down her teeth on the dropper. I pull out the dropper. I hope it’s made of reinforced material. She does not break it. I place the dropper back into the bottle. Mission accomplished.
Emma continues talking for a while, about an hour. Born in 1914, do you think she would have believed it if someone had told her she would live into 2012? “Can you tell me where the subway is? How do I get home from here? How do I get home?” Now she is quiet.
Heavy stuff. My 90 year old mother is dancing a line right now, and it’s as unsettling for her as it is for us. Thank you for sharing so simply and clearly.
Megan, it is unsettling for them. They know all the way through, that something is amiss. That’s hard to watch.
Thank you for coming by and sharing your experience.
I remember your posts when this was your life, dear Carol. Reading this today, I am again relieved that the hardest times are behind you. Yet because several of us were caregivers, we could care for one another in a common manner and love, support and feel compassion for you and Emma. You have a beautiful way of expressing your care. I am so glad that I know you and can read such heartfelt words.
Marsha, yes, just my thoughts — we Roos care about each other because we have all been caregivers. These hard times are behind me, so I had to steel myself to go all back into it again to write these A-Z posts. But, if it helps others then it’s worth it.
Thank you for your kind compliments. I am so glad to know you, too — my caregiving for Emma brought me some good things, too, like meeting you.
Expressive and well-written as always. Dealing with a Dementia patient is not for the faint of heart. I know what my grandmother and aunt were like with their dementia so I don’t envy you dealing with your mother.
No, it was not easy, Gwynn, but it was also my honor. Thanks.
I truly admire your tenacity. As I read this first article, I thought no one can describe the pain and the suffering of someone with dementia unless they have been up that road with them.
You walked that road with Emma. It was a complicated journey, but it has changed your perception of life.
Visiting from A to Z Blog Challenge 2015
Patricia at Everything Must Change
You said it all, Patricia, so wisely as usual. Thank you, my friend.
Beautifully written Samantha thank you. Extremely evocative of the anxiety, both on you and on her …
Yes, Susan, much anxiety. Thank you.
Thank you, R.