Posted September 12, 2012
Living in Twilight- a Daughterís Alzheimerís Story
Part III, August, 2012
"Yes, well- Christmas will be a little different this year without your mother here in the house with us. But Iíve arranged for us all to have a Christmas dinner with her at the Lutheran home. So we can all have a special dinner together with your mother."
Living in Twilight an Alzheimer's Story
"Dad- Christmas isnít a location- itís wherever we are together. Thatís Christmas."
By the time I came home for Christmas, my mom had been moved to a rehab facility and was in a wheelchair. I thought I was prepared. I wasnít. As we walked into the lobby, there she was with her caregiver, a true angel on earth, Ingrid. Dressed in a bright red Christmas sweater, warm pants- her feet shuffling on the treads of her chair- she smiled brightly at everyone as they walked to and fro. I knew that smile well- that warm, welcoming, gracious hostess smile. I had seen it thousands of times at dinner parties as she circled around, making sure everyone had enough wine- had someone new to meet and talk to- that all was well and everyone was comfortable and having a wonderful time. As I approached her, she lifted her hand to me- and nodded- smiling sweetly. Another visitor- how lovely, her smile said.
She didnít know me.
For two days, I chatted non-stop of how we were preparing the house for Christmas, decorating the tree- how we were gearing up for the increase in noise when my niece and her dog would arrive with her "staff"- which is how our family would sometimes tease my brother and sister-in-law. My mom smiled- spoke in brief phrases- always charming, always listening carefully to every story, every memory I shared- which were embellished by my father as he added in details I might have forgotten. But still- every time I said- "Thatís right, Iím your daughter." She would nod and smile. But it was the kind, polite greeting of a social gathering, not a true recognition- she still didnít know me.
On Christmas day, I told my father that I wanted my mom to have some kind of a church service on Christmas, so we wheeled her into the chapel of the facility- right down to the altar. The wonderful gift of having gone to the Episcopal Church all of your life is that you can recite most of the prayers by heart. So, I channeled my own priests from my own church and fumbled back and forth through the service as best I could. I arrived at the prayer- "Thou shalt love the Lord thy God with all thy heart, with all thy soul and with all thy might" and leaned over to make the sign of the cross on her forehead. My mom reached up- clasped my hand, looked me straight in the eye, smiled and said very lovingly-"Youíre my little girl."
And there it was- she knew me. My Christmas wish came true. My mom knew me on Christmas.
It was the last coherent sentence she would ever say to me in person.
May 7th, 2012- My father had found a CD player for my mom for Christmas and she loved to hum along with Christmas music- her favorite. A dear friend of mine- Heather- was working with her every week as a music therapist. And my father was thrilled that in those hours that Heather was there, my mom would sing along with her- her eyes lit up, laughing joyously- glorious hours of music and lively company. As the weather grew warmer, my parents would sit outside in the garden- holding hands and listening to music- humming along and sharing smiles-pockets of paradise in the midst of sadness as spring slowly came in.
My dad called me that day as he did every day. "This is your father, Iím with your mother- do you want to talk to her?" "Of course!" and the phone was passed over and I bubbled just as I used to- "Hi, Mom- itís your darling daught!" and as clear as a bell, I heard- "Oh, hi, honey- how are you?" She knew me- it was said just as she used to say it- same tone, same smile. So, I burst forward and prattled on and on about auditions- clutching at this moment of- "she knows me!" until I could sense she was getting tired. I promised her- "But Iíll be there in July for your birthday, Mom- Iíll be there! I love you." I heard a very faint- "I . . . you" and the phone was taken away.
May 8th, 2012- Late afternoon, I was in the recording studio I had set up in my living room closet and the phone rang. No. I know I stopped breathing. NO. Do not answer it. I donít know why there was this grip of dread. Because after yesterday, I was so sure- I would see her for her birthday. I had been saying to my dad for the past month, "Gee- it sounds like Mom is getting better- her spirits are up- it sounds like sheís getting better."-I was so sure- so absolutely sure, I would see her in July.
"This is your father. I was with your mother- a few hours ago. I was visiting your mother just a few hours ago and they just called to tell me that she had died."
And the world stopped- and stayed there. It all just stopped. Weeks went by- six weeks in a haze of grief and wrenching, crippling pain- my mom died- my mom died from Alzheimerís. Emails and cards, messages and loving posts of support on facebook- suspended in time- in the midst of this fog, one thought kept hammering in my brain. I had vowed to her- "Iíll be there for your birthday in July". I had no idea that her memorial service would be held two days before that.
It was empty- my momís side of the closet was empty. I had begged my brother to leave her clothes for me to go through. I was tersely informed-"Thereís too much stuff in this house and we have to get rid of it- we canít wait for you to get here." There was very little left. I looked at the empty hangers, the gaping drawers in shock- the pretty summer dresses, elegant jackets and lovely suits for church- my momís pride and joy in wearing stylish outfits- shoes, purses to match- almost all gone. I had wanted that last service to my mom- a daughterís rite of passage- to go through her favorite clothes- to remember each holiday vest she wore while supervising each course of Christmas dinner- to decide what should be kept or given away. But it was almost all gone- already packed to be taken away. Later that day, I found a few drawers that had been left untouched. So- I was able to go through and hold a few gloves, a few handkerchiefs- a scarf or two to my face and have my walk down memory lane. "This belonged to my mom- this belonged to her mom"- my family history in linen, satin and lace. "Mom? Iím your daughter- Iím taking Grandmaís gloves home with me- and your favorite dress that you wore to my wedding- Mom?" Silence.
Due to the storm in the area, my mom actually ended up with two services. The first being the blessing of her ashes followed by an impromptu reception at my parentsí house and the actual formal church service was held the next day. My cousins from Colorado and Missouri all pitched in- "We gotta help out our cuz!" Circling with platters, rapidly doing dishes and helping collect wine glasses and napkins from every corner of the house-"Try the basement! Weíll bring out the Christmas stuff if we have to!" Neighbors dashed back to their houses to bring ice and cups for the unexpected home reception- and through it all, I could feel her smiling- "Oh, how nice- just as it should be- one more party in the house."
How do you say goodbye to your mom? How do you honor her? How do you define her legacy? A loss of a mother is so very profoundly felt by a daughter. For now- the one who took me shopping for prom dresses, who taught me to always write a thank you note- who instilled in me the joy and delight of being a warm, gracious and welcoming hostess- who led this family of literary titans to have hundreds of books spilling from every wall in every room of the house- she is gone and the house is so very quiet without her laughter and her marshalling of the troops. As I read through my words the morning of her service, it struck me- all of my trials and triumphs as an actor- "to always set the bar high- and when you reach it, you set it even higher"- the drive that pushed me to move across the country and start all over- "good is not good enough- not when you have the capacity to be great- so, never settle for anything less than greatness"-are all part of my legacy of growing up an artist in my family- resilience on the road less traveled by- a gauntlet with a gift in it.
With all of the last minute changes of my momís service, my father heard my eulogy for the first time that day and cried. My cousin Sally gently offered him Kleenex and kept a comforting hand on his shoulder. After I finished, I sat down next to my dad and reached for his hand. He kissed my forehead and said- "Well done, peaches."
And I knew then that she heard me- as that was the nickname my mom used to always call me.
In July of 2011, I founded the National Team- Actors Unite to End Alzheimerís- SAG-AFTRA/AEA for the National Walk to End Alzheimerís in honor of my parents. It was one of the most wonderful days of my life- to be walking with the LA team in Century City carrying the actorsí union signs and to have other actors run up to us- "Iím an actor, too! Can I walk with you?" 100 rank and file actors reached out to raise over $23,000 across the country in Los Angeles, New York City, Washington DC and Miami. Articles were posted on backstage.com and broadwayworld.com as other actors around the country responded- "Iím walking in Chicago! Iím walking in Virginia!" I live in Los Angeles which is called the city of angels. I promise you- this team is led by many angels across the country- Carol Monda and David Lotz in New York, Jane Love, Pat OíDonnell and Terri Price in Washington DC, Dave Corey, Margot Moreland and Irene Idjani in Miami and Leslie Slomka and Vivicca Whitsett in LA. As my priest, Gabri, said after my mom died-"You have been carrying this torch and now, you must run with it."
A few days after my mother died, I ran in the Revlon 5K Walk for Women. I hadnít trained for it and hadnít slept much, but I was determined to do it in her honor. When I came to the last mile, I pushed myself and ran the last mile at full throttle. As I crossed the finish line, I said to her- "Mom! I finished the race running and at full throttle!" And in my head, I heard her say- "I knew you would."
Nancy Daly is a working Actor, Voice Over Artist and Writer who lives in Los Angeles, but still considers herself an East Coast lady at heart. She is a former member of the Actorsí Equity National Council and the Founder and National Captain of Actors Unite to End Alzheimerís- SAG-AFTRA/AEA. Her familiyís names have been changed to protect their privacy.