Posted August 22, 2011
Living in Twilight
Part I, August 2010
By Nancy Daly
"I know this voice- who are you?"
"I'm your daughter- I'm your daughter."
They took her car keys away last June. She was driving with her son on a busy boulevard at rush hour with her adored granddaughter in the back seat- she couldn't remember how to drive- he told her to turn off her blinker and she turned off the car- impossible to pull over in traffic- she cried- "Stop yelling at me-I know what I'm doing!" But she didn't- 20 agonizing minutes later, they arrived home. Her son shook his head and said sadly- "The keys, Mom- just give me the keys." It was only the first task that would be gently taken away from her.
Living in Twilight an Alzheimer's Story
Slowly over time, her family adjusted- she was a gourmet cook- and they were her designated sous chefs. Holiday dinners used to be course after course of exquisite dishes- the mushroom cream soup at Thanksgiving, the plum pudding at Christmas- it was poetry in motion as she stirred one, supervised the dicing of onions for another- and barked out orders- sipping wine and tossing scraps to the collies who raced through- prancing to be let out and back in again- the granddaughter scampering in avid, giggling pursuit. But Christmas was never to be the same again. She started a fire in the kitchen by placing a plastic cutting board on a lit burner because she couldn't remember that heat came from it. Recipes she used to know by heart for decades were bungled and changed- "I know what I'm doing! You all leave me alone!" And it became clear that Christmas would have to build new traditions- new memories- a simpler feast- no more books as gifts as it was becoming impossible to remember from one page to the next, one paragraph to the next what was just read. She was the third member of the family to have a Master's degree in English Literature- they would now have to move her pieces in board games- as the ability to count "1-2-3 . . . 6" was fading- never to return.
There is no sense of time with Alzheimer's- the same question will be asked several times over and over again. The phone can ring at 2 in the morning, 4 in the morning- it can ring five times in 20 minutes- but you have to answer it each and every time because that might be the one conversation in which she still remembers you and remembers your name. Her family had entered a tunnel of confusion and uncertainty that was narrowing rapidly. There was no hope. There was only decision after decision to be made- how do you make the remaining time as light and joyous as possible - until there is no light- there will only be dusk.
"I'm handing the phone to- to- my husband- what do you call him?"
"Dad- I call him Dad- you see, your husband is my father- he's my father-"
According to the Alzheimer's Association, Alzheimer's afflicts more than 5 million Americans and is one of the leading causes of death in this country- it is estimated to rise to about 35 million globally this year and to about 115 million by 2050. For an actor, the prospect of losing one's memory- one's ability to continue in one's craft- can feel as overwhelming as it is devastating. There are many causes of memory loss- such as mild cognitive impairment- whose symptoms can be confused with Alzheimer's, the most common form of dementia. It is vital to be properly diagnosed as early as possible- remembering that it is a slowly progressing disease. In addition, there are resources available- the Alzheimer's Association has many branches across the country. They are a renowned national resource center- they provide support groups, workshops, financial guidance, referrals for home health care- and ultimately- assistance in finding living facilities.
There will come a time when the Alzheimer's patient will not be able to dress themselves- to comb their hair, to bathe. It isn't that they are physically incapable of buttoning a button or brushing their hair- they simply don't remember how.
"Can you help Mom get dressed? She's having a little trouble-" I entered rather cautiously to find her worriedly pacing back and forth- fumbling with her skirt and blouse- muttering to herself- "Something's wrong- something's wrong with the- with the- the- thing- something's wrong- " And I look- it's on backwards, her skirt is on backwards and it is inside out- the buttons are all open-she couldn't remember how to button them. My mom- the one who taught me the rules of accessories- "no white shoes before Memorial Day or after Labor Day- make sure your stockings are never darker than your pumps- and make sure that your shoes, purse and belt all go together- and patent is for summer"- my mom who prided herself on dressing in her best outfit for church- had forgotten to brush her hair and was in tears that her cuffs were not fastened. Our roles were now switched- I spoke soothingly as I helped her finish getting ready- directed her down the stairs to my father who was waiting patiently- then darted into the powder room to hold the hand towel over my mouth- she cannot hear me cry- it would confuse her, so I have to cry in silence.
Their sense of time and space will diminish- until nothing is familiar- not even their family.
"Oh, the dog is barking- how is your dog- who is she?"
"Baileys- her name was Baileys- but she died, Mom- Baileys died in October." "Oh, poor doggy . . . who are you?"
With Alzheimer's you lose them twice. You lose them when they don't remember you anymore and you lose them again when they die. My childhood memories have now been bumped up to Technicolor- and I clutch at them- because for her, they are now fading into shades of grey and without her verification- without her shared memory of the time that I was learning how to write and wrote my brother's name on the wall so that he would be the one who got spanked instead of me- the time I had to be carried on to my Dad's ship because my hand got caught in the car door- they are slipping away from me- for the joy of remembering, of being able to say to me proudly- "You were only three, but you didn't cry- you were so brave!" my childhood champions are going. Those memories are mine alone now- I can no longer share them with her- and I fall asleep repeating them- for now, I am the sole keeper of my childhood. I alone remember.
"I wanted to ask you- where is your real father?"
"That's him, Mom- that's Dad- that's my father-"
"Oh, no- that's not your father- that's a cousin-where is your real father?"
"Mom- please- I promise you- that man is my father- he's my father-"
"Oh. . . Who are you?"
It is true that Alzheimer's is a fatal disease- but it can be a slowly progressing one- it can go in cycles- weeks can go by and all of a sudden you hear it- your name- a word you were convinced you would never hear again with certainty and ownership- your name spoken by your mom. But- there it is. It can manifest itself very differently in each individual. There is a musician in Los Angeles who no longer remembers his own family, but he can play hours of music on his beloved guitar by heart- the memory is in his fingers. Being diagnosed with Alzheimer's does not mean an immediate end to your career as an actor- it is important to be very honest with yourself as the symptoms progress. If it is becoming too difficult to retain a full length play- voice over work, audio book recordings- you have not lost your talent, you have not lost your artistry.
"We are going to England- your mother wants to see it again- so, we thought we'd go over for a few weeks."
"Yes- I want to see . . . to see- that place-you know- water . . . it's- tea- the tea place."
And I listen so carefully now- to every word she says- because I know that there will come a time when there will be no words- she will stop speaking. In time- there will be a time when she no longer knows me- she will be gone from me, even though she is right in front of me. Alzheimer's will rob me of not only my mom, but of years and years of time- of sound- of memories shared- and I will be left with silence. So, I listen now- and we share laughs and gasps of wonder over "Harry Potter" together- hum along to the soothing carols of favorite Christmas music as that is a language that can carry through the fog of this disease- and I know that I can say "I'm here" with touch and a hug- and somewhere inside her, there will always be an echo of who I am- her daughter.
Living in Twilight- Part II- August, 2011
It was 1:30 in the morning when she rang the bell of her next door neighbor's house.
"Will you take me to London? That man next door- he won't drive me to London. Will you take me to London?"
By now, everyone up and down the block was on alert- if you see Mrs. D walking up and down the street, go get her husband- or the next door neighbors- and just be calm- agree with her- whatever she says- and try and guide her back to her house. She would wander restlessly- to the dining room to knock feebly on the window- sometimes in the front yard- sometimes across the street- tottering in hesitant steps -anxious, frightened- calling for my father-
"Rick! Rick! Where are you? Where are you? Come help me!"
"There's your house, Mrs. D. There's your house- and look- there's your husband- he's right there- that's your husband."
"No, no, it's not- it's- oh, yes- yes, of course! Nice to see you! We have to get going- we have to go to . . . that place- we have to do that . . . "
Most of the time- it was only a matter of moments before a kind neighbor would gently reroute her and she would return to the haven of home- safe and sound. But other times- she would burst out of the door, driven by blind terror at not knowing where she was- or misplaced anger at my father. She would flag down a stranger and shriek- "Call 911! There's a strange man in the house and he's beating me!" Six police cars would show up- and my dad would have to explain- "It's alright, officer. My wife has Alzheimer's- everything is fine- no one is being hurt." Five times the police were called- five times my father would have to be interviewed to determine- once again- no abuse was taking place while my mom shuffled back and forth-"My head- my head hurts- there's something in my head- and it's wrong." This is Alzheimer's.
I cannot even begin to describe the horror and heartbreak of watching and listening as your own mother loses her mind.
I had researched and found a home health care company- very dedicated, very knowledgeable- the answer to our prayers- an experienced nurse to provide assistance to my mom and a much needed break for my dad. But she refused to have a stranger in her house. This was her world- the walls of familiarity were narrowing- and she spent her days in parallel time- reliving past memories of 10 years ago, 20, 40, 60 years ago as if they were yesterday- moving objects around as her shattered mind tried to recreate familiar tasks- putting silver knives in with the linens, clutching her dinner plate and her purse as she made her faltering way to the garage- "It's time for church- we all have to get in the car." And my dad would gently, patiently inform her- no, church was on Sunday- and it was dinner time now- let's all sit down and have dinner. And she would- for a moment, join us- her eyes darting fearfully from one to the other- searching to remember names, faces- but she would jolt up again- take a few steps and call- "Rick! Rick! Where are you?" and we would all take turns trying to steer her back to the table- rushing in to place ourselves between her and the stove because accidents were becoming more frequent and we lived with the constant fear- someone would get hurt- again.
My father ended up in the hospital three weeks before Christmas. The stress of taking care of my mom caused him to black out in the middle of the night- hitting his head as he fell, he was knocked unconscious- it was hours before my mother found him. But because she no longer knew how to dial a phone- she staggered up the street until she found a neighbor who could call an ambulance. My brother and I spent hours tracking down friends to take shifts in the waiting room with my mom until my brother could get there- we couldn't trust a busy hospital staff to keep an eye on her- how could she be expected to understand let alone remember any diagnosis- any instructions for my father's recovery- when part of the time- she had no idea who he was. This is Alzheimer's.
By the time I saw my parents again in July- her weight had plummeted- 85 lbs. She could no longer dress herself- piles of clothes would be discarded until we could find a combination that she liked and that fit- everything was falling off her fragile, skeletal frame. My dad would try anything to get her to eat- her favorite soups from the specialty grocery, eggs just the way she liked them- fresh toasted sour dough bread with sweet strawberry jam- my parents are from the mid-west and my dad is a grill master. He would try over and over- flank steak- her favorite, sausages- pasta dishes- anything. Nothing tempted her. Her appetite was failing- most of the food on her plate made its way to the dog. She needed help cutting her meat; silverware was overwhelming at times- spoons were safe- knives were perilous. Each night, it took us over two hours to get her to take a bath and go to bed. She would stumble throughout the house in her underwear- lost, terrified, wailing- "Get away from me! Don't touch me! I have to go! I have to get this done!" She would pound on us with her fists- "NO!!!" Only to collapse sobbing moments later- "Help me! Help me!"
This is not my mom. This volatile, violent, ghostly being is not my mom. No, this is not my mom. But this is Alzheimer's.
At first, it seemed she had no idea who I was- when I tried to prevent her from walking in front of a car in a parking lot- she had screamed- "Who are you? Leave me alone!" But that night- two hours into trying to lead her back up the stairs for the third time- she glared at me, reached out and struck me-"You're a horrible girl! You left! You moved! Go back where you came from! I hate you!" My father whispered-"Don't do that. Don't cry. She didn't mean it." Then kindly, but firmly, he coaxed her up the stairs.
And I let it burn through me- her loss for the daughter I was supposed to be, her frustration at the daughter that I am- it is spiking, piercing, rending every aspect of my being- I am "the one that left" . . . "the one that moved to California" . . . I am "the one who is doing that acting thing"- it wants to hack at me, this grief- it wants to bring me to my knees- I will not let it. I ruthlessly shove it down and bury it. I will think later. I will feel later- I will eat later- sleep later- years later if need be. I am here to take care of my parents.
By the next day- as I wash dishes, do laundry, slip into bathrooms after she uses them to wipe surfaces down with disinfectant wipes and make a game out of squirting everyone's hands with sanitizing gel- the bathroom has become a mystery to her- I trot up and down the stairs and in and out of the back porch with cups of tea and help her get dressed- re-dressed- all the while keeping an ear and an eye out to guide her back from slipping out the front door- on guard for any objects that have been carelessly left and need to surreptitiously be returned- she turns to me as I am massaging her shoulders-
"Where is your mother? Where are your parents? We would love to write to them and tell them what a lovely, helpful young woman you are."
My dad- who had brought my mother down the stairs to apologize to me the night before tries to remind her-"She's our daughter, dear- that's our daughter." She shakes her head and says- "Oh, no- I don't think so." It doesn't penetrate- she has completely forgotten who I am.
With offices in New York, Chicago and Los Angeles, The Actors Fund provides access to resources on care options and offers in home evaluations wherever possible- to assist in determining a person's overall physical and emotional health. They provide support groups and assistance for caregivers as well- including practical advice on managing finances or referrals to legal resources.
In addition, The Actors Fund runs The Lillian Booth Actors Home in Englewood, NJ, a state-of- the-art assisted living and skilled nursing care facility. The Home has a 32 bed enhanced Alzheimer's and dementia unit, which offers specialized activities, programs and nursing care, as well as a high staff to resident ratio, all designed to meet the unique demands of these residents.
"The Actors Fund's experienced and professional staff assists people step-by-step to explore, compare and locate the most suitable options for people living with Alzheimer's and their loved ones. We are here to help people make an informed decision, during what can be a very stressful time," said Brian Stokes Mitchell, Chairman of the Board of The Actors Fund.
The Alzheimer's Association has numerous avenues to assist with wandering- a danger to over 60% of Alzheimer's patients. Medic Alert/SafeReturn is a program that assists with this hazard. It is a 24 hour nationwide emergency response system. It consists of an identification bracelet to be worn by Alzheimer's patients and their caregivers that include their medical conditions, medications taken, names and contact information of family members and doctors as well. In the event of an accident- as in my dad's concussion- the bracelet would indicate that there was an Alzheimer's patient at home and an emergency contact number of a third party. An electronic tracking component called Comfort Zone is offered by the Association as well.
We finally had to put my mother in a medical facility in order for her medication to be stabilized before moving her into assisted living. The day my father took her to the medical facility was one of the worst, most wrenching days of his life. She raged. She cried. She tried to escape out the front door. She lashed out and hit one of the attendants. She was spiraling downward. My dad had always said, "She is my love. I cannot leave her." And now, every time he has to leave her side and go home to their house of over 40 years without her- she cries- and cries.
This is Alzheimer's.
On the day that I was flying back to Los Angeles, as my brother and his family loaded up the car- my father gave me a strong hug - "Thank you, dear- thank you for taking such good care of us. You were a great help- we love you" and my mom stepped up with the bright, friendly smile of a gracious hostess- "Oh, yes, you were! We want to write your parents and thank them . . . You're so pretty."
I have just been slammed with a sledgehammer- I cannot breathe- but I cannot let this hit me now. So, I grit my teeth- and bear it- through the bright chatter of my brother and his family, through the hurried hugs and pats as they drop me off at the airport- through check in, through security, through the long corridors of the airport- until I reach the anonymous safety of a lone café table can I finally drop my head in my hands and cry.
I had to wait until my mother had Alzheimer's- until she didn't know me anymore before I ever heard her say to me- "You're pretty."
Alzheimer's is not a solitary disease. It effects entire families- circles of friends, co-workers- it may not be every other thought you have, but it will be every third or fourth- "my mom has Alzheimer's"- it is a cloak that you wear constantly. And some people will leave your life abruptly- or just fade away- and that has to be okay. There is a shadow and a loss in your life that is growing ever darker, ever deeper- there are times you are living in a hurricane of dread and pain- and for some- this will not be what they signed up for- as your lover, as your friend- and they will leave you. But at the same time- you will find that there are champions in this world. There are guardian angels- who reach out with comfort, support and faith. They will stand by you and walk with you. They will be your harbor; your shoulder to lean on- to cry on- is there anything I can do? I'm here for you- and they mean it- and they are.
So, I would just request- if you have a daughter- in the spirit of making her day a little brighter and putting a glorious smile on her face and in her heart- in the next few moments, hours, days- no longer than a week- go to her, hug her and make sure you tell her-
In loving solidarity-
For further assistance: The Actors Fund: (800) 221- 7303; www.actorsfund.org
Alzheimer's Association: (800)272-3900; www.alz.org
Nancy Daly is a graduate of Smith College and LAMDA and a former member of the Actors' Equity National Council. She is a working actor/writer currently residing in Los Angeles. She is- and always will be- an East Coast gal at heart. Her parents' names have been changed to protect their privacy.
Living in Twilight an Alzheimer's Story - Part III, August 2012