Book Review: Making An Exit by Elinor Fuchs

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 84^th 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!

Books: Making Rounds with Oscar by David Dosa, M.D.

In Making Rounds with Oscar, geriatrician Dr. David Dosa focuses on the nuances of Alzheimer’s disease and dementia. Of Dr. Dosa's patient stories, I found most intriguing the story of a woman with dementia named Ruth Rubenstein and her doting husband, Frank Rubenstein. I have focused on the details of their relationship as chronicled by Dr. Dosa, as it clearly illustrates how dementia affects relationships from diagnosis through decline.

Diagnosis
“I had to look into the eyes of the eighty-year-old woman I had just examined and ruin her life.” Dr. Dosa is examining Mrs. Rubenstein to determine if she has dementia. Couples like Ruth Rubenstein and her husband Frank have a symbiotic relationship whereby one can deflect the questions to the other. So when asked about her favorite restaurant, Ruth does just this – she has her husband answer the question. Dr. Dosa is not deterred by this attempt at covering up her memory loss, and moves on to asking her next to draw a clock from memory. Ruth does this after some coaxing. However, when asked to place the hands at 2:45, she puts the little hand at the two and the minute hand half way between the 4 and the 5.

Next Dr. Dosa asks her how many four legged animals she can list in one minute. Ruth lists only 6 and cat was listed twice. When asked to spell the word ‘world,’ Ruth is able to do so quickly and accurately but she cannot spell it backwards, and gets only two of the letters in place when she tries.

Privately, Dr. Dosa asks her husband more specific questions including if she has done anything dangerous in her everyday living, like leaving the bath running, leaving the stove on, having car accidents or fender benders, or if any other changes in her behavior have occurred. This particular section reminded me of a good friend whose mother had consistently been hitting the curbs and sometimes parked cars at her assisted living facility. My friend had the hardest time convincing her mother to give up driving. Independence is hard to part with, but the dangerous facts spoke for themselves. My friend finally scheduled a meeting with her mother’s doctor, so together she and the doctor could address her health issues in relation to her ability to drive.

Aging and Memory
During Dr. Dosa’s examination of Ruth she tries to insists her memory loss is simply because she is old, but memory does not decline due to simple aging. Here, Dr. Dosa touches on the fact that “age really has nothing to do with memory, and problems with memory are never normal aging.” In fact, many problems like arthritis, high blood pressure, high cholesterol, adult-onset diabetes, and some cancers are contributed with aging, simply because they usually occur in people’s senior or elder years. Interestingly, these are not strict aging related health issues, but rather the effects of years of build-up in the body, allowing the problems to surface in later life. For instance, if one has smoked for 50 years of their life, it makes sense that the damage would in time catch up producing perhaps emphysema or lung cancer in one’s 60’s or 70’s. In fact, my grandmother who began smoking at age 16 did not get emphysema until she was in her early to mid 70’s.

Decline Begins
Dr. Dosa chronicles the decline of Ruth’s mental health via dementia. First Ruth’s memory impairs her social graces and embarrassed by her memory loss, she withdraws from her friends. The withdrawal causes a depression, which is then treated by medication. Next Ruth becomes unable to complete household chores, meals are frequently burnt, simple recipes become too difficult to manage, and her husband Frank must resort to hiring a maid and ordering meals out.

Romance Flourishes
What is interesting is that despite this decline, the Rubenstein’s relationship remains loving and dementia even spices up their love life. Dr. Dosa said, “One day…Frank pulled me aside…like a young teen sheepishly buying condoms for the first time, he asked me if I had any samples for something that might help his impotence." Frank was having trouble meeting his wife’s sexual demands, which Dr. Dosa explains is not unusual for married couples when one has dementia.

Caregiving Becomes Too Difficult
However, as Ruth’s mental decline gets worse, it becomes apparent to Dr. Dosa that Frank can no longer care for her. Frank appears unwashed, disheveled and exhausted. Although Frank takes offense at Dr. Dosa’s suggestion that he put his wife in a skilled nursing facility, he takes the suggestion to heart and hires an in-home caregiver.

Health Declines
Not long after, Ruth contracts pneumonia and is hospitalized. Her memory impairment makes the hospital stay difficult. She wanders about in the middle of the night, gets “tangled in her IV tubing” and falls “awkwardly to the floor.” The fall leaves her with a broken hip requiring surgery. The surgery leaves Ruth with more health issues. She “suffered a pulmonary embolus and became less stable.” When her breathing becomes difficult, they intubate her. Her health does eventually improve but it leaves her too weak to walk and her husband Frank must consent to place her in the skilled nursing facility.

Appetite Declines
In the skilled nursing facility, Ruth stops eating and loses 10 pounds. Her husband insists that she is seen by a gastroenterologist, and refuses to consider hospice. She again contracts pneumonia and returns to the hospital. During this stay she is given strong medications to calm her. Eventually a one-to-one aide is then assigned to keep her from getting up from the bed and falling during the night.

She returns from the hospital, but is too confused to eat and refuses to do so. Intravenous fluids are required to sustain her. She experiences a confused delirium and agitation from hospitalization and refuses to eat. Her husband Frank insists that she must eat, and requests a feeding tube. However, Dr. Dosa kindly reminds him “When your wife was still able to speak her mind she told me she didn’t want a feeding tube to help her with her nutrition. Shouldn’t we honor her wishes?” Frank agrees with Dr. Dosa to honor his wife’s wishes, but begins to cry saying, “Doctor, I’m not ready for her to go.”.

Misconceptions About Feeding Tubes
Here, Dr. Dosa explains the misconceptions with feeding tubes and how they are the point of contention with most families. Most people believe that the feeding tubes prolong life, but Dr. Dosa points out that there is “no place for feeding tubes in terminal dementia. Objectively they have never been shown to increase a person’s length of life or reduce the number of episodes of pneumonia. Feeding tubes are not without their side effects.” Although people believe that not feeding a patient is “cruel and unusual punishment”, Dr. Dosa points out that “loss of weight at the end of life is a natural by product of the body shutting down as it prepares itself for death. People at this stage do not perceive hunger or thirst the way someone who is healthy” does.

Health, Love & Appetite Appear to Return
Some days later, Ruth’s delirium improves and she starts eating again. She and Frank are seen walking down the hallway holding hands. When their anniversary date comes up, Frank asks for privacy so he can be alone with Ruth. Dr. Dosa notes that “requests for privacy between patients and spouses are not uncommon…they’re a married couple. Just because she lives here doesn’t mean that they don’t have needs.” Interestingly, what Dr. Dosa finds out from the head nurse is that another male patient has been spending a great deal of time in Ruth’s room and that Ruth likes his attention.

Spouse Forgotten
Within a few minutes of husband Frank’s arrival, Ruth screams and rushes out of her room. “The look on her face was one of pure terror and she ran past us without stopping.” Her husband Frank calls Dr. Dosa into the room and explains their relationship and what just occurred.

Frank and Ruth had met at a concentration camp in 1943. They spent nine months together until they were sent away to different camps. Before the separation they agreed that if they survived, they would look for each other to meet at a church courtyard in Frank’s hometown. That date they met up was 63 years ago that day; this was the anniversary Frank had come to celebrate, but instead of a celebration he was met with a shock. “’For the first time since that day, Ruth does not know who I am.’” When he bent to kiss her forehead, he said “’in her eyes all I could see was terror…I was a stranger to her. She just started screaming…I put my hand up to comfort her and she slapped me in the face. Then she got up and ran out of the room.”

Existential Death
Frank then said, “Doctor, in my mind my wife died today…please just make whatever is left of her [life] comfortable and don’t let her suffer anymore.”

Somatic Death
Frank never returned to the nursing facility after this day, and within a few weeks, he died of a heart attack. Ruth outlived him by just a couple of months, and without any children, “her lawyer was the closest thing she had to next of kin.”

Although Dr. Dosa’s chronicle of the Rubenstein’s relationship is not met with a happy ending, it is an honest portrayal of how dementia takes its toll on patients and their families.

Dosa, D. (2010) Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat. New York: Hyperion

REM Sleep Improves Memory

A new study suggests that naps can “boost your ability to process and store information tenfold – but only if you dream while you’re asleep”.

The Center for Sleep and Cognition at Beth Israel Deaconess Medical Center in Boston, Mass., conducted a study on 99 college students. Students were asked to memorize “a complex maze on a computer”. Then the students were placed “inside a virtual 3-D version of the maze” and asked to “navigate to another spot within it”. The students did this several times before half of them were sent to take a 90-minute nap. The half that remained awake watched videos. Five hours later, all of the students were tested on the maze again. The students who napped tested better than the students who stayed awake, “even those who had reviewed the maze in their heads.” Of the students who napped, those who dreamt of the maze “performed 10 times better than the nappers who didn’t.”

The students who dreamt of the maze tested poorly on the maze the first time around, which may support a theory of researchers’ that the brain recognizes when a task is difficult and thus prompts dreams about it. The lead author of the study, Robert Stickgold said, “When you dream your brain is trying to look at connections that you might not think of or notice when [you’re] awake.” Michael Breus, clinical director of the sleep division for Arrowhead Health concurred, “The sleeping brain seems to be processing information on one level, but on a higher level, it helps evolve your memory network if the information is relevant or helpful in your life experience.”

Some vitamins, minerals and amino acids that help produce sleep are: Calcium, Magnesium, B vitamins (6 and 12), Inositol (enhances REM sleep), Chromium, Tryptophan, Serotonin, and Melatonin.

Ref: http://www.cnn.com/2010/HEALTH/04/22/naps.memory.dream.brain/?hpt=Sbin

http://www.holisticonline.com/remedies/sleep/sleep_ins_nutrition.htm

All content © Village Memorial. 2009-2010.

Alzheimer's: The Art of Losing

I found Ruth L. Ozeki’s piece, "The Art of Losing: On Writing, Dying, & Mom," of special interest because my grandmother suffers from Alzheimer’s. I wanted to learn how others deal with such a long-term loss of one who slips away slowly over several years. Though my grandmother’s health in other aspects is not bad, the fact that she cannot recall names, faces, places or family history is a death of sorts. It is a death of memory. Somehow families must push through with the awareness that their loved one is no longer who they once were in healthier times. We must learn to love a new person who looks a great deal like the old person, but may or may not remember us from day to day. We must learn to not hold anger or resent their loss of memories we revere, but learn to appreciate new memories we can create while they are still with us. I felt Ozeki really proved how important this step is. Ozeki’s adaptability enabled her to build new memories with her mother and prepared her for her mother’s passing. Ozeki’s piece was an inspiration to any person dealing with a loved one suffering from Alzheimer’s.

Ruth Ozeki discusses writing the article “The Art of Losing: On Writing, Dying, & Mom” which she was asked to consider renaming to “The Art of Letting Go”. Ozeki thoughtfully considers the alteration in meaning via a poem by Elizabeth Bishop titled “One Art.” Ozeki describes the poem as “clearly…a case where ‘losing’ and ‘letting go’ are not interchangeable.” Ozeki highlights some differences between letting go and losing: “When I let go, I’m in control; when I lose, I’m not. Letting go is a willful act; losing, a violation of my will.”

Ozeki then discusses the traditions her family’s Japanese culture and the custom of sitting zazen during spiritual meditation. Her mother as a 2nd generation Japanese American had so much distance from her Japanese roots that she did not meditate in the zazen position and this prevented her from attending her grandmother’s funeral. Her inability to sit in the position would be “an embarrassment to the family,” Ozeki explains. At the funeral in Japan Ozeki explains another Japanese custom called “honewake” or “dividing the bones, which is often practiced when a person’s family lives in different places.” She returned from Japan with some bones of her grandmother, which she was to deliver to her mother. The experience inspired her to film a documentary called “Halving the Bones.”

Once Ozeki’s father died, she asked her mother with Alzheimer’s to come live with her in 1999. She cared for her mother until her death in late 2004, but reflects on some of the exchanges that took place between she and her mother during those five years. Once mother expressed concern that the washer and dryer in the guesthouse she lived in would prevent Ozeki from washing laundry once she died and Ozeki rented the guesthouse to another person. Ozeki settled the concern by jokingly confirming she would bury her mom with the washer and dryer so she could keep her clothes clean in heaven. When her mother turned 90 in May of 2004, her mom was in disbelief that she was 90. She said she felt forty and when Ozeki confirmed that even she was “older than forty,” her mother replied, “You are? That’s terrible!”

Ozeki then reflected on the differences in how she handled the deaths of her father and her mother. When her father died, she wasn’t ready for it. She held much anger at him for not preparing for it. She drank too much during the grieving process. However, the time she spent with her mom prepared them both for her mother’s death. “I wanted to keep my wits about me. I didn’t want to run away." She also encourages that people “write your loss” – “I spent ten years losing my mom, little by little, day by day, but during that time, I wrote books, letters, e-mails, blog postings, stories, journal entries, and poems…I’ve been turning loss into letting go.”

Reference:
Ozeki R. L. (2008). The Art of Losing: On Writing, Dying, & Mom. Shambhala Sun Magazine. Retrieved from:
http://www.shambhalasun.com/index.php?option=com_content&task=view&id=3186&Itemid=244
All content © Village Memorial. 2009-2010.