Posted November 4, 2010
Living in Twilight -
By Colleen Lindsey
"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.
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 diseases- cognitive memory loss, dementia- whose symptoms can be confused with Alzheimer's. 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?"
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.
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. It is important to be honest with yourself as an artist- it does not mean the end of your career as an actor- you do not have to make these decisions as an island. If it is becoming too difficult to retain a full length play- voice over work, audio book recordings- contact The Actors Fund and let their professional staff guide you- you have not lost your talent, you have not lost your artistry.
"We're going to England- your mother wants to see it one more time, so we're going."
"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 music together as that is a language that can carry through the fog of this disease- and I know that I can say "I love you- I'm here" with touch and a hug- and somewhere inside her, there will always be an echo of who I am- I am her daughter.
For further assistance:
The Actors Fund: (800) 221- 7303; www.actorsfund.org
Alzheimer's Association: (800)272-3900; www.alz.org