I am writing slowly on the little white board, hanging on the wall of the day room. I check if all the letters are there, even size in a straight line. I don’t want to make a mistake. I don’t want somebody to think I did not care; that I did not love her, that it is not important.
This morning, when I came in, the nurse was staring at her computer screen. Normally she does not notice me. Today she lifted her head and walked up to me. Serious she whispered:
“Dora… do you know?
–She passed away suddenly yesterday evening.”
She continued, giving me details. I was not listening. I was dizzy, surprised. When she stopped I said:
”Well, at ninety nine it‘s probably O.K.
I had seen the colorful birthday balloon in her room; bold numbers pasted over a metallic yellow background: one-zero-zero. That balloon lasted a long time. Normally birthday balloons deflate after a few days, they hang sadly more and more depressed. Hers stayed… plump a few weeks.
From here I can see “her table” in the day room. This was her place, by the window, with the view of the parking lot. How strange this table will stay empty today, naked grey Formica. I wish there was a flower bouquet there. Would anybody know what the flowers mean? Would the people who live here understand it is a special day? Usually, (small laugh) I would be relieved to see the table empty. It would mean that Dora has gone for a stroll with a companion or with her niece pushing her wheelchair. And, maybe, the day room would be quieter.
Dora was sent to us from another unit because of her loud screams. They told us:
“She cannot stay! Her screams are so disturbing for everybody!”
What about us? Who are we? Nobody?
Her screams were intense, shrieking, surprisingly loud for someone her age, ninety-nine at the time. Is it that only when you reach that age you get the guts to really want? To really be? To completely express what is happening? Sometime her screams were words, repeated, a bit more distorted each time.
“WHERE ARE MY SHOES?” On the days her legs were too swollen for shoes. She could feel, and see, that she was only wearing socks. Here she was in the world, away from home, wearing no shoes!
“WHERE ARE MY CLOTHES?” Seated at “her table”, no closet nearby, no drawers; was everything stolen? How could she check and touch her things? Her possessions?
“DON’T GO AWAY! DON’T GO AWAY!” Dora lived all her life with her sister, even during the many years of her married life. First her husband passed away, then her beloved sister. That’s when Dora’s memory started to fail.
“I AM DYING.”
“GIVE ME FOOD.”
Satisfying her need, when possible, was rarely enough to stop the scream, the anxiety. There was more to be expressed. In those moments I felt that her neurons were telling us:
“Yes, we know she has now food in front of her, but, if you don’t mind, she still has a little more pain, a lot more pain, to let out.”
The neurons were keeping the complaint gates open longer.
One way to communicate was to sit down by her side with paper and pen. At the top I wrote down her words, in bold capitals:
“I WANT TO GO HOME.”
She started reading immediately, with interest. Then, our dialog started on the paper. Like a reporter, I was writing down everything:
–WHERE IS YOUR HOUSE?
–WHO LIVES IN YOUR HOUSE?
–MY, MY… MOTHER”
Dora was seriously pondering each answer. She was enjoying reading the story again and again, from the start, as it was developing, following the words with her finger. Then, maybe, I could offer her a marker, place a coloring outline in front of her and point to a leaf or a petal. When done filling the area with color she was asking “Where? Where?” I pointed to another area. As she was busy coloring, I would try to disappear hoping she continued on her own.
When she moved in with us, Dora’s most important piece of luggage, were her two clipboards. One was holding simple coloring images, the other contained reading material: love and instructions letters and a variety of short texts. In time of distress, particularly when she was wheeled away from “her table” Dora pressed at least one of the clipboards tightly against her chest. Every morning I was assigned to locate the clipboards and update them. I took out what was soiled by food or drink. I added fresh coloring pages. I wrote the date on a copy of daily instructions typed in capitals by the social worker. I placed it on top of the reading material.
DEAR DORA, TODAY IS TUESDAY JANUARY 20 2016
YOU EAT BREAKFAST AT 8:30 IN THE DINING ROOM. IT IS IMPORTANT TO EAT AND DRINK TO BE STRONG AND IN GOOD HEALTH.
AFTER BREAKFAST YOU SIT IN THE DAY ROOM. YOU CAN COLOR A DRAWING OR READ.
AT 10 YOUR FRIEND WILL COME. SHE WILL ACCOMPANY YOU OUTSIDE TO GET FRESH AIR AND SEE THE PLANTS.
AT 12:30 YOU WILL EAT BREAKFAST IN THE DINING ROOM. IT IS IMPORTANT TO EAT AND DRINK TO BE STRONG AND IN GOOD HEALTH.
IN THE AFTERNOON YOU WILL SIT IN THE DAY ROOM AND PARTICIPATE IN GROUP ACTIVITIES. THERE MIGHT BE MUSIC, GAMES AND CONVERSATION ON MANY TOPICS.
AT 6PM YOU WILL EAT DINNER IN THE DINING ROOM. IT IS IMPORTANT TO EAT AND DRINK TO BE STRONG AND IN GOOD HEALTH.
AFTER DINNER YOU WILL GO TO YOUR ROOM. YOUR AIDE WILL HELP YOU TO GET READY FOR BED.
YOU WILL HAVE A GOOD NIGHT SLEEP IN YOUR BED AND FEEL REFRESHED IN THE MORNING.
DORA, I LOVE YOU VERY MUCH. I AM HAPPY YOU ARE WITH US. WHEN YOU NEED SOMETHING PLEASE ASK AND WE WILL BE HAPPY TO HELP YOU.
THANK YOU VERY MUCH DEAR DORA.
Under that page I placed other recommendations hand-written by the night team. Copies were always available in Dora’s night stand.
Dora, darling, please don’t scream.
It is only five in the morning. It is too early to get up. Please stay in your bed and go back to sleep. Don’t scream. Later I will help you to get dressed and you will have a good breakfast. You are a wonderful woman. It is important to eat and drink, to be strong and in good health.
Dora, I love you very much, god bless you.
Alone at her table, during the day, Dora’s hesitant low voice could be often heard going through those words slowly like a prayer.
The clipboard also contained short messages left by visitors:
I CAME TODAY TO VISIT YOU BUT YOU WERE ASLEEP. I AM SORRY WE DID NOT TALK. I WILL BE BACK NEXT WEEK. I LOVE YOU VERY MUCH. TAKE GOOD CARE.
YOUR FRIEND, DEBORAH
Among the messages, I inserted lyrics of popular songs, most of them in Russian, Dora’s first language. I found them in the recycling bin, multiple copies of sing-along discarded by my retiring Russian colleagues. Unable to understand them, I trusted that they had been chosen for their entertaining quality. Indeed, I observed Dora reading them attentively many times. She was turning the pages, eager to discover the next one.
One week before her passing, I sat with her during one of those HOW-COULD-I-HELP-HER-STOP-SCREAMING interactions. I placed her reading clipboard in front of her, turned the pages to the first Russian song and put my index under the first word. She read a few lines, turned to me and ordered, in Russian “Read!”
How do I read, in Russian, to a deaf person?
I moved my finger slowly along the line of words and mouthed exaggeratedly the few letters and words I recognized. She looked at me with interest.
When I stopped, she ordered again:”Read!”
Very proud to have passed the reading test, I continued to the end of the song. When I turned the page, she took over the reading.
It was STAND BY ME. It also came from the recycling bin. I had thought it could be appropriate for her. She was not able to decipher every word, but I still hear her cracking slow enunciation:
STAND BY ME
I WON’T CRY
I WON’T SHED A TEAR
She was pronouncing “tear”, like tear it apart.
The day after her death, I found her coloring clipboard in the hallway. Without thinking, I threw the drawings in the garbage and stored the naked board with our art supplies. I went to her room to get the reading clipboard and the piles of songs and coloring material that were stored in her drawer. When I cautiously opened the door, the room had been stripped of everything. How come! She was still here less than twenty-four hours ago. I opened the drawer. It was sadly empty.