Making an Exit by Elinor Fuchs is a book that documents a mother-daughter drama through Alzheimer’s discovery, caregiving woes, and adventures in language. Elinor, while not as close to her mom while she was growing up, draws near to her in the later part of her life. When her mom first experiences a heart attack at 63, and then is found to have breast cancer at age 65, then has a mastectomy and lumpectomies at age 67, Elinor becomes more cognizant of her mother’s mortality. The mastectomy seems to set the stage for how she and her mother’s relationship will progress. “My career as ‘Mother’ – her name for me later when she struggled to place our relationship – may have been prefigured here, the day mother was sent home from the hospital.” A few years later during a trip to Edgartown for Labor Day, Elinor makes the discovery – her mother has Alzheimer’s. It dawns on Elinor when Lil, at age 74, cannot recognize a seagull and asks, “What’s that, a cat?”
The realization of Lil’s dementia and subsequent confirmation of her diagnosis by a gerontologist begins Elinor’s new protection of her mother. She extends their trip together then goes to stay with her mother in Lil’s apartment “watching her like a hawk.” Elinor discovers that her mother can no longer drive (she gets lost), can no longer cook “the fridge is full of takeout containers” and she can’t do laundry. “She used to wash out her stockings every night, but now she just drops them on the bathroom floor.”
Elinor decides to leave her mother in her apartment in Washington DC because there, “she has a devoted brother, a niece, a former business to which she is attached as the landlord of its office space.” Her reasoning is that if she moves her mom in with her in New York, “she’ll lose that support and the familiar surroundings of half a century.”
Elinor immediately decides to hire some household help and a companion “who will come part of every day to organize her life at home and take her shopping or for a walk. I’ll call this person her ‘secretary’– yes a good idea, make a bridge back to her old familiar life.” Elinor is clearly aware of person-centered care as she tries to give her mother some dignity and comfort by using phrases and titles that her mother used in her working life for over 35 years as a business owner. Elinor specifically focuses on hiring someone who is intelligent, interested in current affairs, and will be a good companion for her mother. She specifically says “I want no nurses in white uniforms”; she wants someone who will be fun. Considering her mother traveled the world for her international business, collected art pieces and beautiful clothes, she appreciates her mother’s interest in having a good time.
When the home-care companion agency cannot help Elinor with the type of services she wants to provide her mother like driving her around, shopping for clothes, taking her to the movies, and to the Women’s Democratic Club (something her mother specifically asked to join), she looks elsewhere. Elinor begins looking for people in her own industry the theater for ladies in-between acting jobs. She gets one “secretary” for 10 weeks, then another for a year, and finally breaks down and hires a home caregiver who ends up spending more of Lil’s money than appropriate. As Elinor describes it, “the decline is precipitous, and I am running, running to catch up. We go from fifteen hours to thirty, from five days to seven, from half-days to whole days, and then to nights.” Because Lil’s space does not allow a live-in caregiver, Elinor starts hiring “single professional women and willing grad students” to rotate sleeping on the sofa in the den with ads in community weeklies: ‘Earn Money While You Sleep, Seeking Companion Care for Lively Retired Professional Woman.”
Somehow even as unmanageable as the caregiver/secretary situation seems, Elinor makes it work to allow Lil to stay in her own apartment for 9 years. She visits her monthly, managing all her mother’s affairs. “I am the link to her internist, her cardiologist, her oncologist, her gynecologist, her dermatologist, her lawyer, her bank, her accountant, her insurance agent, her landlord, the IRS, the Social Security Administration, Blue Cross, Medicare, the Wadhwanis [people who bought her mother’s business], and the helpers. I have left out her piano tuner, her dry cleaners, her hairdresser. The entries in my address book for Mother run to a dozen pages.” Elinor really grows into her role as a caregiving daughter, managing her mom’s care from a distance most of the time and managing it hands-on when she’s in town. “I learn to change my mother’s diaper: a fresh horror that practice will mitigate.”
Eventually the caregiver situation breaks down, if only temporarily, when one of the main caregivers must return to her home country for her father’s illness. This opens the door for Elinor to try assisted living for her mom, something she had decided against early on. Two weeks into her mother’s stay at the assisted living home, she takes Lil back to her old apartment for a visit. She asks her if she knows where she is. She says, “Well, yes, public-address. We are very near…somewhere…” Elinor tries another way, asking if she knows whose things are in the apartment. “Well, yes I do,” Lil answers, “I’ve known these things all my life.” When Elinor prompts her as to whom the items belong, Lil says they belong to her. But when Elinor asks if she wants to live there again, Lil nearly shouts “HELL, NO!”
This part of Elinor and Lil’s story was truly fascinating. It certainly highlighted the ideas of persons with Alzheimer’s experiencing selfhood. It also clearly expresses how well persons with AD can compare their present self to their former self. It also seems to address the guilt one might feel when moving a parent from their home to a facility. If the home is tied to a former successful life, it could be a source of frustration. As in the case of Dr. M in the book, “The Person with Alzheimer’s Disease” by Johns Hopkins, Lil reveals both an intact Self 1 and Self 2. She is aware of the differences in her personal abilities and lifestyle with dementia and is able to compare them with how successful, independent and well spoken she was. She is also able to express anger for the differences between who she is now versus who she was in the past. Elinor realizes this during the apartment visit. She says, “I see that putting down this cumbersome baggage of a life she cannot live would be a huge relief to Mother, a liberation.” To confirm her belief, Elinor asks her mother why she doesn’t want to come back to the apartment she lived in for over 30 years. With clarity, Lil answers, “Why go back in life when you can go forward?”
Lil thrives in the new assisted living home until her care needs become too unmanageable for the hired nurses. When a space in a Special Care Unit for dementia opens up, Elinor moves Lil there. The Special Care Unit is working with new practices in ethical caregiving. They “do not sedate the patients, and try to reduce if not eliminate prescription drugs...They do not restrain patients during the day or tie them to their beds at night.”
Lil loves the new facility. As Elinor describes her first day upon arrival, “Lil is in summer camp and out to make the most of it.” For Lil’s 84th birthday, Elinor, Lil’s brother and Ruth, one of their favorite caregivers, celebrate with Lil. They look through old photos of Lil, finding new pieces of the puzzle on Lil’s former life and former old flames. Elinor teases Lil saying, “Oh Mother. You sly dog you! You trickster!” Elinor then tells her uncle, “The woman led a double life.” At this point, Lil changes the subject and addresses the three of them. She “proceeds to offer a peroration and exhortation from the dais, as it were, reviving perhaps the skills she displayed on the Glenville High Debate Team sixty-seven years ago.” This was a wonderful display on preventing excess disability. By Elinor, Lil’s brother and trusted caregiver all treating her as a person and not a disease, she felt encouraged and strong enough to attempt a speech. Although throughout the book Lil’s part in the conversations are often difficult to follow, her birthday speech is quite special. The best part about her speech is that it’s all very optimistic. Some of the highlights were, “And being smart, and being a happy, that you can say to them – if you want to – that ‘Isn’t it wonderful?'...In a very hopeful way. And I’m awfully happy….We can do it! We can do it!...I’m happy with it!...By gosh I, all I can say is… Let’s try!”
In sharing this speech, Elinor really portrays Alzheimer’s in a very positive way. Though Elinor shares the good and the bad throughout her journey with Lil, she keeps it extremely lighthearted. She also makes interesting realizations of Alzheimer’s that are encouraging. She shares when Lil once kept rediscovering a gift she’d received on Christmas morning, every couple of minutes, asking what it was. When her granddaughter confirmed it was her Christmas present she’d just given to her, Lil would exclaim, “You did? How wonderful!” then repeat it all again a few minutes later. The granddaughter laughed that, “It’s wonderful to give a gift that keeps coming back… You get so much for your money.” Later the granddaughter said to Elinor how much nicer Lil is with Alzheimer’s than she was before. She says, “Mom, Alzheimer’s is good for Grandma.” Elinor also describes the fresh, clean start that Alzheimer’s often provides. “With Alzheimer’s, the clock is reset all day long. We never linger in the past, nothing is as out of date as the past five minutes.”
Elinor also describes the happiness of romance and Alzheimer’s with Lil’s new love interest in the Special Care Unit. “Mother wears the satisfied grin of the Cheshire Cat about this ‘catch.’” Lil later finds a new love interest, one who is married, but his wife, Mrs. Blue, supports the coupling. “My husband has taken quite a shine to her. I’m so happy he’s found her. Anything that makes him happy,” Mrs. Blue says. Elinor also describes how her mother got up and danced when a band once came to play for the residents. One of the staff members said, “Your mom – I couldn’t believe it! She just got up there and danced. She reminded me of Isadora Duncan.”
This book was truly a joy to read. Ms. Fuchs used a wonderful balance of reality and comedy. She never dwelled on the negative. Some of the conversations her mom and she had were absolutely comical. Once when she roused her mom to get up and go to bed, Lil said “Are we going to jop the gizzers?” and Elinor said, “Sure, we’re going to jop the gizzers right now!” Ms. Fuchs also portrays her mother as happy and this is an important thing to share while people are so very fearful of getting Alzheimer’s. We need to see people like Lil, who are happy, always dancing around, pursuing new love interests and wanting to meet new people. I believe that my grandmother found more happiness in dementia than she had before it. She always held back her opinions and thoughts, but with dementia, she was finally able to be candid and say exactly what came to mind. While I won’t say her comments always made my mother happy, they definitely gave us a laugh and made my grandmother happy.
What I liked most about Elinor’s accounts of her journey with Lil’s dementia was how it felt very real, without feeling downtrodden. In a wonderfully refreshing way, Ms. Fuchs made caregiving from a distance seem very doable. I would definitely recommend this to anyone who wants to know more about Alzheimer’s and I would love to see more books written in this style.
Have you learned something about Alzheimer's you wish more people knew about? Have you read any dementia care books you'd like to recommend? Please share!