CHAPTER 1

Prelude to Dementia

Alice, who is eighty-three years old, sits in an elderly carecommunity with her eyes closed, listening to a voice tellingher to open her mouth and take another bite. Alice keeps hermouth closed in protest. She does not want to ingest another bitof food. Alice has lost fifteen pounds during advanced stages ofAlzheimer's dementia, a disease she has been battling for eightyears. She also has lost her ability to walk independently, andshe is weak and unsteady. She is confined to a wheelchair forsafety.

The persistent voice of her daughter, Gretchen, once againdemands that she should open her mouth and take a bite ofdinner. Gretchen, now in her fifties, is searching for distantmemories of when she was young and this role was reversed.She tries to remember the tricks her mother used to get her toopen her mouth.

Gretchen recalls a time when she herself was ill and verydehydrated. Her mother would hold a spoonful of clear soup andbeg Gretchen to open her mouth, promising her a new outfit aftershe got better. "Mom," Gretchen explains, "if you eat and getstronger, we can go shopping!" Alice's mouth remains closed.

Gretchen is losing patience. "Open your eyes!" she demands.Gretchen looks into her mother's blue eyes, hoping to find aspark of attentiveness. Instead, she gazes into what seem to bethe eyes of a distant stranger who has no interest in Gretchen orwhat she is saying.

Gretchen has had a long day at work and is tired. She wonderswhat food she has at home to make dinner for herself and herhusband, who by now is probably waiting for her at home. Sheturns to Alice, who is very thin and does not resemble the able-bodiedmother who raised her. She wants her mother to eat,regain strength, and return to a time when she could rememberGretchen's identity.

Alzheimer's disease has taken Alice from Gretchen, butGretchen wants her mom back. Occasionally, Alice may be morebright-eyed and experience moments of clear memory, lucidthoughts, and conversation. However, these times pass, and Alicereturns to a state of not knowing her daughter Gretchen atall. Alice then repeatedly asks questions about where her long-deceasedparents are located, and she reflects on their recentvisit. Gretchen does not know how to handle these statementsabout parents who died many years ago and thoughts that arenot reality.

Gretchen's eyes fill with tears as she struggles with thisoverwhelming and frustrating responsibility. How does thishappen? Why is it happening to Alice? What is the best way tocare for her? Who has the answers? Gretchen knows she is notthe first person to encounter this situation, but it is the first timefor her, and she is lost.

Little guidance is provided for many typical journeys andchallenges in life. Surprises are around every corner along life'smost important paths. Why are we surprised? Why is there notmore guidance before big events in life, such as childbirth? Iremember thinking during my first experience giving birth, andall the new experiences that followed, that there is too muchunshared information. Much of what happens to us throughoutthe generations is not discussed.

Despite the difficulties of raising children, many people havethe passionate opinion that their experience of raising childrenwas their most significant accomplishment. The small print shouldread, "With the child-rearing experience, you may encountersleepless nights, emotional upset, financial stress, and otherdisturbances." Although literature is available for advice, mostsources are inexact and contain theories and opinions that maynot apply to the situation. This may cause anxiety about notdoing it correctly. For example, timeouts never worked with mychildren. I tried this many ways and read how it should work ifdone correctly. My children just got up any time they pleased.The magnitude of the responsibility, experience, formal hands-oninstruction, and guidance were lacking in the raising and guidingof children. The unfortunate first-child syndrome should be labeledexperimental-child syndrome, defined as when the parents learn.This critical information about child care and rearing responsibilityis transmitted through self-study at home with books, the Internet,and parenting magazines.

The surprises and challenges in life do not end with childrearing. Another hidden reality that goes unspoken is the secretof what actually may happen when we finally get our children toa stage when there is not as much physical and directional workanymore. The kids are more independent, and family activitiesevolve, so the child and adult become more connected throughconversations and negotiations. We dream this day will come,but it arrives with the surprise of yet another unspoken reality forwhich we may not be prepared.

We become blindsided by the care of Mom and Dad andhave no preparation for this monster of new responsibility. Wefind ourselves fumbling through issues with little guidance. A new,learn-as-you-go experience now faces us when we must care foraging parents.

More Responsibility

A typical day for the working family with young children is jam-packed.After a full day of work from 9:00 a.m. to 5:00 p.m.,the parents tackle the children's after-school activities that mayinclude soccer games, basketball practice, and gymnastics meets.After these activities, we may require a quick stop at the grocerystore before preparing dinner. That is the life of the many babyboomers who juggle kids and work. Just when you think thereis no room for any more responsibilities, you are suddenly...