VM Book Club Review: Sum It Up by Pat Summitt

In her book "Sum It Up", Pat Summitt gives an open and honest look at her early onset Alzheimer's, while intermittently discussing her career memories, both good and bad, leading up to and during her coaching of the "Lady Vols".

Early in the book, she describes how "a memoir is not a documentary. We think we keep an accurate record of ourselves in the bean-counting tablets of our minds,but we don't. None of us sees or remembers everything about one's life; memories are unreliable - they smudge and fade, like disappearing footprints in the sand. We're too busy standing in the middle of it to remember everything perfectly." It's a good reminder to all of us, that even without dementia, our memory is not "perfect".

She describes life with Alzheimer's like footprints in the sand being "washed away by the surf". Her earlier memory lapses had her asking "people to remind me of the same things over and over". She would have to ask "three times in the space of an hour, 'What time is my meeting again?'" and still be late. Her close friends noticed she "would forget the most important conversations". Although she said she typically lost car keys and her cell phone, she now "lost them three times a day".

At first she thought her memory loss was caused by "a reaction to medication" since she was on a "handful of prescriptions for various ailments." She also found it difficult to get out of bed in the morning, because "in bed there were no challenges. No worrisome situations that required a decision. No conversations in which I feared I might make a telltale slip-up." This led her to become "increasingly hesitant and withdrawn, to the point that" she began avoiding meeting with "players one-on-one."

Alzheimer's began to affect her coaching as well. "I grew confused in the heat of a game" and there were "strange empty moments when I couldn't' call up the right term." After spending four decades teaching herself to "see ten players at once, the whole ninety-four feet of hardwood and all the movement on it" she was starting to see "an indistinguishable blur, flashes and bursts."

She describes her "short-term factual memory" like "water", "events are a brief disturbance on the surface and then it closes back up again, as if nothing ever touched it." She notes however that her long-term memory "remains strong", which she likens to the fact that the events were recorded "when my mind was unaffected". She feels that her emotional memory is intact, "perhaps because feelings are recorded and stored in a different place than facts." 
Her doctor described Alzheimer's as "hugely unpredictable". In some people it moved quickly but others were "able to stay active and engaged for many years." Pat decided to fight and stay engaged in coaching as long as possible. "When you learn to keep fighting in the face of potential failure, it gives you a larger skill set to do what you want to do in life. It gives you vision."

When she decided to step aside as head coach to become "head coach emeritus", she went public with her Alzheimer's diagnosis. Her hope was that the "audience might see the disease in a new light: as something that could be managed, lived with in a purposeful way. The great stigma of it was in thinking it robbed us of all dignity and value. Sometimes, I thought we strip people of their capacities faster than the disease itself does."

As Pat describes it, "People with mild to moderate stages of dementia have far more abilities than incapacities...just because certain circuits of memory or swiftness of synapses may fail, thought and awareness and consciousness do not."

Also interesting were Pat's descriptions of her career as head coach, her coaching style and relationships with the players. She addressed several tips and great advice for building and maintaining hardworking, award-winning teams. 

Do you know someone with early onset Alzheimer's? What has it taught you?
If you were to be diagnosed with early onset dementia, would you continue working? Why/why not?

Improve Memory & Cognitive Function for Dementia

If you're looking to improve memory and cognitive function for someone you love with dementia, here are a few tips.

Supplements to Start Using

·   Add Fish Oil – Fish oil has positive effects on cognitive functioning. There are possible benefits on the brain health and aging according to the researchers at Rhode Island Hospital’s Alzheimer’s Disease & Memory Disorders Center.

·   Add Acetylcholine supplements, or medications that slow the breakdown of this neurotransmitter. According to the National Institute of Mental Health, “a decrease in acetylcholine may be responsible for some of the cognition deficits in Alzheimer's disease” and “patients taking medications that slow the breakdown of this neurotransmitter have experienced improvements in memory.”

Supplements to Stop Using

·   Phosphatidylserine – According to Dr. Glen Smith at the Mayo Clinic, the early studies that showed health benefits with this supplement were only when the supplement was derived from the brain cells of cows. Mad cow disease concerns led to developing the supplements form soy or cabbage and the plant-based versions have not been researched enough to prove results.

·   Ginkgo Biloba – According to Dr. Brent Bauer at the Mayo Clinic, a 2009 issue “of the Journal of American Medical Association, found no evidence that ginkgo biloba prevents memory loss or slows the progression of cognitive decline in older adults.”

Therapeutic/Memory Triggering Activities

·   Decorate the place to resemble a past era, like Belfair Gardens did with a 1940s makeover to help Alzheimer's patients go for a walk down memory lane.

·   Play DVDs that focus on past eras, like the Living Memories Archive is making for fostering “The stimulation of the memories of dementia patients, which help to provide new topics for conversation.”

·   Add Music Therapy - According to research by Willamette University posted on the US National Library of Medicine, music therapy has a “possible beneficial effect on symptoms including social, emotional and cognitive skills and for decreasing behavioral problems of individuals with dementias.”

·   Add “training and practice in problem-solving skills, memory techniques, and other cognitive strategies” to help improve their abilities according to “Aging Concepts and Controversies” by Sasser and Moody (page 23).

·   Group people together to let others help “compensate for cognitive losses through a social process dubbed ‘interactive minds’ or ‘collaborative cognition’” (Sasser & Moody, p. 24.) whereby one person helps to fill in the gaps of another person’s memory when recalling things.

Take It With A Grain

            As we understood it, our grandmother had Alzheimer’s for the last 10 years of her life (2002-2012). However, upon researching some of the symptoms of Alzheimer’s we now recall behaviors that fit the recognized symptoms of Alzheimer’s much earlier on. In the mid 1990’s our grandmother believed someone had stolen something out of her purse at the grocery store. (This was very uncharacteristic behavior.)

As far back as the mid 1990’s, marked grandmother’s dismissal of important discussions and events with short phrases (most commonly) “Take it with the grain.” Although her usage suggested, “dismiss it – it’s not important” the real meaning of the idiom according to the online dictionary is “to consider something to be not completely true or right.” So, at that point she was already mixing up idioms. Our belief was that her dismissals indicated apathy or lack of interest. However, in hindsight the improper idiom usage suggests something far more serious brewing. The idioms she used quickly ended conversations, and considering another symptom of Alzheimer’s is problems finding words and/or expressing oneself in conversations, it might have been the root cause for her to say such things.

Around the late 1990’s grandma nearly stopped driving. Although she never explained why she seldom went out alone, it seems likely that she was becoming fearful of getting lost in her own town.  When grandpa chose to move them both to San Diego in 2000, grandma never drove again. Considering how she was not confident enough to drive freely in a city she’d lived in for over 30 years, we can only imagine how fearful driving around an entirely new city would have made her.

When looked at through the filter of early-onset Alzheimer’s symptoms, we see that our grandmother’s development of the disease began much earlier than any of us realized.

Statistics on Alzheimer’s

It is estimated that around 18 million people worldwide have Alzheimer’s, according to the CDC’s webpage on World Alzheimer’s Day using numbers provided by the World Health Organization (WHO). The WHO estimates the number of people with Alzheimer’s to total 34 million by 2025. Some additional facts as highlighted by the CDC’s website on Alzheimer’s are:

·   2.6 million to 5.2 million Americans have Alzheimer’s.

·   Alzheimer’s is the 6^th leading cause of death for adults over age 18.

·   Alzheimer’s is the 5^th leading cause of death for adults over age 64.

·   Presently, healthcare costs for persons with Alzheimer’s are $183 billion in the US.

Diagnosing Alzheimer’s

According to the Alzheimer’s Association (ALZ.org), “there is no single clinical

test that can identify Alzheimer’s.” For diagnosing Alzheimer’s, ALZ.org explains that evaluation methods include “a complete health history, physical examination, neurological and mental status assessments, analysis of blood and urine, electrocardiogram, and possibly an imaging exam such as CT or MRI.” A 2011-2012 progress report by the National Institute on Aging explains advancements in detecting Alzheimer’s to include genetic markers, insulin resistance and brain glucose uptake; cerebrospinal fluid (CSF) biomarkers; imaging the living brain (looking for cortical thinning); combining genetics, CSF and Imaging Biomarkers; Sensory changes (like loss of smell) and Motor Changes (walking speed changes). [This last marker of gait speed predicting Alzheimer’s was researched by Portland’s very own Oregon Health and Sciences University and announced in July of 2012.]

Symptoms of Alzheimer’s

According to the Mayo Clinic, some symptoms of Alzheimer’s disease include:

·   Memory (unknowingly repeating statements, forgetting appointments or conversations – and not remembering them later, misplacing items, forgetting names of loved ones or everyday items)

·   Disorientation & Misinterpreting Spatial Relationships (losing the sense of the day of the week or seasons of the year, “getting lost in familiar places”)

·   Speaking and Writing (trouble finding the right words to identify things or express oneself, trouble taking part in conversations)

·   Thinking and Reasoning (problems managing finances, balancing checking accounts, and keeping track of bills, usually attributed to difficulty recognizing and understanding numbers)

·   Making Judgments and Decisions (burning food on the stove, trouble driving)

·   Planning and Performing Familiar Tasks (familiar routines and tasks become a struggle, such as planning and cooking a meal or playing a game)

·   Changes in Personality and Behavior (some people with Alzheimer’s may experience: “depression, social withdrawal, mood swings, distrust in others, irritability and aggressiveness, changes in sleeping habits, wandering, loss of inhibitions, delusions, such as believing something has been stolen.”

Biological Causes of Alzheimer’s

The Mayo Clinic lists the causes of Alzheimer’s as resulting from “a combination of genetic, lifestyle and environmental factors that affect the brain over time.”  Alzheimer’s disease “damages and kills brain cells” and with fewer brain cells there are “fewer connections among surviving cells” of the brain leading to more cells dying and “significant brain shrinkage.” Two abnormalities of the disease have been noted, according to the Mayo Clinic as plaques (“clumps of a protein called beta-amyloid…interfering with cell-to-cell communication”) and tangles (the internal system of the brain carrying nutrients and other essential materials depends on a protein called “tau” and when tau protein twists into “abnormal tangles inside brain cells” this leads to “failure of the transport system” which causes “decline and death of brain cells.”)

Alzheimer’s Lifestyle Risk Factors

            According to the Mayo Clinic some Alzheimer’s disease lifestyle risks include: “lack of exercise, smoking, high blood pressure, high blood cholesterol, poorly controlled diabetes, a diet lacking in fruits and vegetables, and lack of social engagement.” Other factors may include previous trauma to the head, gender (more women than men develop Alzheimer’s), family history and genetics, and age (the risk increases after age 65 and “nearly half of those older than age 85 have Alzheimer’s” says the Mayo Clinic.

Please Share With Others & Add your Comments Below

Our hope is that by sharing and talking about Alzheimer’s experiences with others, we can help to inform those who are less aware so they may watch for symptoms in loved ones and have greater compassion and understanding for others facing the disease.

Tips to Enjoy Activities with a Loved One with Dementia

When engaging in activities with your loved one with dementia, things may or may not go as planned. Here are some words of advice from the book, “Care that Works” by Jitga Zgola.

• Avoid trying to convince a person to do something they cannot do.
• He/she must take part willingly. There is no meaning in activities that are forced on a person.
•  Start the activity and let the person’s natural inclination take over.
• If the person becomes stuck or loses track of the activity, let it go and start over from the point where the person seemed to know what she was doing.
• Anticipate and help with decision points.
• Speak slowly, but do not speak down to the person.
• Use short, simple phrases, addressing one topic at a time.
• Narrow the subject down by asking Yes or No questions.
•  Make sure you give him/her your full attention on the task or conversation at hand. Your attentive energy will keep him/her focused.
• Use physical expressions of caring, such as gentle touching or holding hands (if she/he will allow this).
• Find or at least acknowledge meaning in everything she/he says and does.
• Remember, this activity will not reverse the condition, but it will lift the effects of sensory deprivation, social withdrawal, and functional decline and break the cycle that leads to excess disability.
• Be aware of your own frustration and back off whenever you start to feel the situation is futile. But do so with sensitivity, allowing the person to save face.

Tips above found on pages 80, 142, 143, 145, 146, 161, 164 of “Care that Works” by Jitga Zgola.

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!

Long-Term Care

Financing long-term care was a nightmare for our family. My grandparents initially “qualified” for Veterans benefits, as my grandfather fought in World War II. Initially, my grandfather and grandmother were receiving the maximum benefit of $2,019 per month (for veteran and spouse). Thus, the Veterans Administration was paying roughly 30% of my grandfather’s assisted living home monthly cost until about a year and a half into his care, when they determined he actually didn’t qualify for benefits. At this point, the VA began to demand the $40,000 back that they’d paid out. My mother had to get an attorney and try to fight the VA to get everything corrected.

The Veterans Administration “does not reveal maximum allowable assets” and according to a New York times article, $80,000 (“the house and a car are exempt from this total”). Yet, what the VA told my mother, was that because my grandparents owned a house it disqualified my grandfather from getting long-term care assistance from the VA. (At the time my grandfather entered the assisted living home, he had a caregiver who filled out his paperwork to help him and my grandmother enter assisted living. It is likely she left out what assets he had to make assisted living appear cheaper for him.) Interestingly, it is illegal for someone to help a veteran fill out the 26-page application. According to the September 2012 New York Times article, "A Little-Known Benefit for Aging Veterans," “The department forbids anyone to charge to help veterans fill out these challenging forms.”

In the end, the VA offered my mother a “bargain” if she repaid half of what they paid ($20,000 within 60 days) they would never ask for the final $20,000 they had paid out. My mother took their “bargain” to avoid paying it all back, but within a couple weeks of paying it, the VA demanded the full amount. Her attorney had to help her prove, several times, that she was given a special deal and had met the requirements to qualify for their “deal”. Their demands for the full $40,000 dragged on for sometime, and caused my mother a great deal of stress, but eventually the deal of paying back only 50% of what they paid out, $20,000 stood.

After the VA fiasco, my mother was paying about $8,000/month for both my grandparents to reside in a very nice assisted living facility with an integrated memory care unit (for my grandmother who had dementia). My mother spent all of the money my grandparents had in savings, cashed out her own retirements, and the stress created a variety of health problems for her. She eventually left her job to deal with all the complications, taking an early retirement. A recent segment on NPR, which interviewed Elder Law attorney, Marielle Hazen, highlighted these types of sacrifices. As Ms. Hazen described it, “I see a lot of family members making a lot of sacrifice: leaving the workforce, losing their retirement benefits, losing health care benefits in order to make sure their parents are provided the best care.”

During the time my grandparents were in the cohabitation (dementia care with other residents) assisted living home, my mother kept shopping around for assisted living homes that wouldn’t charge so much. The cost savings created other complications however. Some homes were in bad neighborhoods. Others had the memory care residents locked up in a separate facility, away from their non-dementia spouses. Eventually my mother met with an Elder Care attorney, and learned how to qualify my grandparents for Medi-Cal, and got them into a Medi-Cal Long-Term Care Provider (a skilled nursing facility). This new facility cost about 60% less than the assisted living home they had been in. However, this “solution” was short lived. My grandmother died within 5 days of the move, and my grandfather died less than two months later.

The skilled nursing facility was filthy, noisy, and horrible. The staff moved my grandmother’s bed out of the room that she and my grandfather shared right in front of my grandfather in less than 24-hours after her death. He was nearly in tears as he said to me, “Where are they taking that? I bought that bed for your grandmother.” The staff kept coming in and interrupting my visit with him, their walkie-talkies echoed down the corridors, and because my grandmother was dead and they needed the room, they wouldn’t leave us alone until they could move my grandfather to his new room with a roommate. It was a horrible scene, and when he said to me “I don’t plan to stay here long,” I didn’t blame him one bit.

I did not agree with my mother in moving my grandparents to the skilled nursing facility, though I can hardly say I blame her given the financial situation and costs of keeping them in assisted living. It was not my money to spend, and therefore it was not my choice to make. Yet, considering the short time they lived after the move, it would not have cost much more had they remained in assisted living.

In some ways I do believe that the move killed them. I believe the strain that my grandmother experienced with having dementia and being relocated after nearly 3 years in the same place, to an entirely new place led to her stroke. Her death in turn, killed my grandfather’s will to live after 50+ years of marriage. His decline after her death was swift and deliberate. He was ready to go.

Thus, financing long-term care is a definite strain on families. It can drain their bank accounts, savings, retirements, and tear them apart in time. There is also guilt involved when money becomes the issue. Fortunately for “Schnootzie,” the grandmother of the NPR article on long-term care, her grandchildren were caring for her with resources her son who preceded her in death left in his will to be used for her benefit. “But in most circumstances, people don't have that extra set of funding. And so it could be mom or dad or grandma or grandpa who is paying directly for the caregiver services” according to Ms. Hazen the Elder Care attorney.

Sometimes what families can afford for care is not the best place, or where they would wish their loved ones to be. I know in our family that was the case. The “affordable” skilled nursing facility my mother chose, was in my opinion, a place to die. It’s care and atmosphere would kill anyone’s will to live. When we arrived at the skilled nursing facility, they were removing a resident who had just died through the front doors. An hour later, as we were leaving we noticed an EMT sitting with the survivors of the decedent telling them about the death in public view right out in the lobby. To say the skilled nursing facility was inferior to the assisted living facility is a massive understatement. The assisted living facility had fun activities, kind caregivers, warm decor, privacy, and staff that treated the residents like family. I know where I would want to spend my last years of life, but where I will be able to afford to live is what will determine where I go.

I believe if we can carefully plan for our own futures, we can begin to care for our own successfully. We can purchase long-term care insurance to cover the costs of long-term care. According to Wikipedia, “Long-term care insurance generally covers home care, assisted living, adult daycare, respite care, hospice care, nursing home and Alzheimer's facilities.” Sadly, “Out of more than 313 million Americans, only about 8 million have any such protection, according to the American Association for Long-Term Care Insurance” says NPR in their May 2012 article “Long-Term Care Insurance: Who Needs It?” In the article, Geneva Hunter, a lady interviewed by NPR goes on to say how although her job offered that as an insurance option, she couldn’t afford the $400.00/month from her salary to pay it. When I consider the fact that my grandparents assisted living facility cost $4,000/month per person, the $400.00/month sounds like quite a bargain.

Another benefit of long-term care insurance, according to the May 2012 NPR article, “Waiting To Buy Long-Term-Care Insurance Adds Up” is that “all the money you save for retirement, you can actually use it for retirement, as opposed to having been forced to use that money on your care in a nursing home.” That unfortunately is exactly what happened to my grandparents. The younger a person is when they buy the policy, the cheaper the policy will cost them. However, in NPR’s interview with Kimberly Lankford, a personal finance writer for Kiplinger.com, Ms. Lankford says, “In your mid-50's, we say it's usually kind of a sweet spot. It is, you know, the rates are usually a bit more competitive then. And also, it's before a lot of people have started to develop medical conditions which then also make it more difficult to buy this coverage.”

Ms. Lankford also describes how the long-term care coverage generally gives a person a $150.00 daily care benefit ($4,500/month of coverage) for about 3-years. “A couple could pay about, $3,500 a year for both of them to get these basic benefits.” Although 3 years sounds like too short of a time to have coverage, it is exactly how long my grandparents were in long-term care. They moved into assisted living in June of 2009 and died in June and August of 2012. Had my grandparents purchased long-term care insurance earlier in their lives, their entire care needs during the last 3-years of life would have been covered. Their retirement savings would not have been drained. My mother’s retirement savings would not have been drained. Also, considering how my grandfather thought he had VA assistance, and ended up losing it, I don’t think we can count on the government to pay our way in long-term care. We can only rely on ourselves, and it seems that long-term care insurance is the best bet to cover such financial needs.

Have you been involved with long-term care funding for a loved one? Or do you have long-term care insurance for yourself? Why or why not?

Dementia Care and Death Notification

For persons with dementia, one question not handled by advanced directives, is how to tell them when a loved one has died. One facility took the lead from the patient’s son.

Well, we just had a person die, and the son told the father. We asked him if they wanted to take the father to the funeral, and the family said no. The nurses themselves don’t really go into it. The son doesn’t think that his father remembers. I don’t know if his father remembers or not, but he doesn’t have a NEED to know. We don’t think it’s our business to say, “Do you remember your wife?” “Well she died.” To the demented person it doesn’t mean anything. We just meet the needs of the person individually. If it was a person who keeps on saying “where is my wife”, “where is my wife”, then we would probably tell him that we are really sorry, but that she had died. But then they have people walking around asking, “Did I get my pills?” “Did I get my pills?” You don’t have to keep repeating. So again it is just really individual. We also go off just what the family members want. It’s their family.

Many long-term care facilities use POLST forms to keep track of their patient’s end-of-life wishes. Some facilities also have on-staff social workers that can help families work through advanced directives for their loved ones.

Have you had the difficult choice of informing a person with dementia about the death of their loved one? How did you handle it?

Book Review: Dancing with Rose - Finding Life in the Land of Alzheimer’s

Overview
In "Dancing with Rose: Finding Life in the Land of Alzheimer's" by Lauren Kessler, Ms. Kessler takes work as a Resident Assistant in a care facility for people with Alzheimer's. Although Ms. Kessler starts out at the care facility with the intent to make posthumous peace with her mother while learning enough to publish a book on Alzheimer's, Ms. Kessler soon becomes enmeshed in the lives of her residents. She builds relationships, grieves at the loss of others, works to cater to each person's specific personality and desires, and ends up keeping the job far longer than she ever imagined.

Ms. Kessler, who began her journey with many pessimistic views on Alzheimer's given the poor relationship she had with her own mother when her mother had the disease, does an about-face. Her initial negative views on Alzheimer's change, as she begins to express the disease as a complex and unique condition requiring patience, understanding, compassion and adaptability from caregivers. She learns to work within its confines and bravely shares both her successes and failures with her readers.

The Characters
Ms. Kessler, the author of the book, is the main character and the one through whose eyes we get a glimpse at all the other characters She is an author, on a caregiving assignment in a care facility, observing and interacting with residents who experience the effects of Alzheimer’s. In addition, Ms. Kessler is a mom, holds advanced degrees, and lost her own mother to Alzheimer’s.

The other characters, as portrayed by Ms. Kessler, are fun and multidimensional. She makes it clear they are authentic people, living real lives; they just happen to live in a care facility because they need some assistance due to memory loss. Although there are quite a few characters Ms. Kessler makes reference to, for the sake of simplicity, these are the characters we found the most intriguing.

Ella – A large and quiet woman, whose only interaction with Ms. Kessler, affects the author deeply.

Eloise – A kindly soul who loves hugs. She has a local daughter who seldom visits, and usually complains about her mom’s care when she does.

Frances “aka Calm Guam Frances” - A veteran resident assistant at the facility and Ms. Kessler’s trainer. Frances is an understanding woman, known for being calm, compassionate and keeping everything under control.

Hayes - A former engineer and tall, slender man, who is constantly cold. He is always dressed well thanks to his loving daughter and often asks, “What’s next?”

Jasmine – A hard-working, single, young mom, and trusted co-worker of Ms. Kessler, who is determined break out of her minimum-wage job to improve her life.

Marianne – An independent, “tall attractive, well-dressed woman” (p. 79) who “believes she is an administrator” at the facility (p. 85).

Rose – An unconventional woman who does exactly what she likes and treats all the other residents of the facility like one big extended family.

Alzheimer’s as Hopeful and Positive
Throughout the book, Ms. Kessler portrays Alzheimer's as a hopeful experience. Sometimes, she even poses it as a mere inconvenience. For instance, when Marianne forgets when lunch will be served, and has to ask again twice more, Ms. Kessler does not see this as problematic. She instead praises Marianne's former successes, "This is a woman who graduated from college in 1948, a woman who figured out how to be a feminist while Betty Freidan was still working it out. Does it matter really, that she forgets when lunch will be served?" (p. 91).

Even when Ms. Kessler has a negative experience with a resident, she doesn't let it frustrate her. In fact, she relies upon the many positive interactions with the other residents to outweigh the few bad experiences. At one point, when an especially challenging resident, Rose, snuck into Hayes's room and "smeared her greasy, cookie crumb hands all over" his bedding, Ms. Kessler is clearly agitated at the extra laundering that had to be done (p. 101). However, she recovers quickly by focusing on the positive relationships with other residents. "I get a hug from Eloise. I pour Marianne a fresh cup of decaf. I kid around with Jane. I find my rhythm again" (p. 102). Ms. Kessler’s positive relationships with other residents help her to maintain good composure during the more difficult times.

Patient Centered Caregiving
Ms. Kessler tailors her care and interactions to the individuals she is caring for. She explains her fascination with her patients "I enjoy their company. Their dementias and delusions, their personalities, are fascinating and distinct. Figuring out who they are and what makes them tick is intellectually and emotionally challenging. It is also deeply satisfying" (p.93).

With resident Hayes, Ms. Kessler makes the connection that as a former engineer he needs "every process broken down into small steps" because it "must be how he lived his occupational life" (p. 95). She then tailors her care of him; "I will treat him like the methodical, systematic, organized engineer he was" (p. 95). She proceeds to explain every step in her care processes to him, which she finds helps comfort him by alleviating more of his concerns.

When introducing herself to resident Marianne, Ms. Kessler foregoes her normal greeting of "patting an arm or rubbing a back" (p.84). Instead, she matches Marianne's professional demeanor and formality and shakes hands. She also stays within Marianne's reality, asking "what would be appropriate questions and respond[ing] in appropriate ways if she actually were an administrator here" (p.86). Validation therapy is the approach she finds is helpful in working with Marianne (p.87).

Residents as Individuals
Ms. Kessler encourages us to see beyond the disease; to see people changed by Alzheimer's as individuals. Ms. Kessler also sees her residents as people, with personal lives and specific interests. In reference to a neighborhood with a few swinger couples, she says, "Officially, this is neighborhood 4, but Jasmine and I and the other RAs call it, with wonder and amusement and not a hint of condescension - 'Maplewood 90210' or 'The Old and the Restless'" (p. 78). She respects that residents have a right to explore their sexuality and to be in private relationships with other residents.

New Insights into the Lives of Family Caregivers
While Ms. Kessler’s book was centered mainly on caregiving within a memory care facility, she did touch on aspects of family caregiving. Ms. Kessler’s book illustrated just how much work it is to care for persons with memory loss and how varied the needs of residents can be, from those needing help with every aspect of living to individuals needing just helpful reminders. Ms. Kessler’s book also demonstrates how families can continue to care for their loved ones even after they are being assisted in a care facility by providing them good quality clothes, visiting them often, and maintaining good relationships with the care facility staff.

An Insightful and Inspiring Read
As a good friend likes to say, "You reap what you sow" and persons with Alzheimer's are definitely one great example of that. The openness, positivism and willingness to roll with the punches, as Ms. Kessler finds and expresses in her book, can make visiting and caring for persons with dementia a wonderful experience.

Improv - Making the Best of Dementia Behaviors

What I have learned in dealing with unusual behaviors is to just roll with them. I see it like improv, where I react to whatever’s happening with the openness to work through it cheerfully. Fortunately the behaviors my grandmother exhibits are rather mild, so it's not difficult to work through. If my grandmother doesn’t remember something, I say “that’s okay” and move on to something else. Positivity is key.

I also use other methods of communication like showing her imagery and photographs, making eye contact, smiling, patting her hand or arm, and including her whenever possible. It has made the entire difference for my own visits lasting a pleasant 4 to 5 hours, while my mother, who doesn’t utilize these methods, having less tolerable, even frustrating, shorter 30-minute visits.

While visiting my grandparents at their care facility, I noticed several behaviors of my grandmother’s that were unsettling, but possible to work though.

1) Slapping the table repeatedly
My grandmother often slaps her hand, palm flat, against the table. She does this several times in succession. My mother finds it annoying and usually tells her to stop doing that, but of course that does not help.

While I was there, visiting with my husband and mother-in-law in tow, my grandmother did this slapping the table behavior mostly during our conversations. It seemed to me at the time, and now confirmed after this week’s readings, that she must have felt left out of the conversation with the 4 of us (my husband, mother-in-law, grandfather and I) carrying on a normal conversation, and my grandmother unable to jump in, must have used this noisy action to break in to the conversation.

My method to comfort her was to make eye contact with her and smile. If I was sitting close enough to her, I would also pat her hand. This seemed to calm her behavior for a bit, but the slapping would return as soon as our conversation lingered too long without her.

2) Interjecting “Bye Bye!” while waving (in the middle of conversations)
Another behavior during others’ conversations is that my grandmother will interject loudly, “Bye bye” while waving us away. I see this also as another way to break into the conversation.

My method for this behavior is to smile, make eye contact, and let her know we were staying a while longer. My grandfather usually shakes his head in frustration, but he doesn’t correct her as much as he used to thankfully.

3) Half sentences
While I was describing the delicious pancakes my grandmother used to make from scratch, she shook her head and waved her hand interjecting “Too much! Too much!” I tried to help her answer this thought more fully by offering, “Too much food?” or “Too much work?” She said, “work”, so we settled on that.

4) Unable to Communicate Food Preferences/Needs
While eating with my grandparents at their care home, my grandmother said she wasn’t hungry, then proceeded to pull French fries, pickles and strawberries off the nearest plates. Since the whole table was family, it wasn’t a problem. Still, I wanted to make sure she got enough to eat, so I cut my sandwich in half and give it to her (she took one bite and didn’t want it). So then I offered her more of the same items she was preferentially picking (finger foods like fries, grapes, strawberries, and pickles) off husband’s plate, then my mother-in-law’s plate, and finally sending my husband to bring her a whole plate of food.

5) Difficult Phone Calls
On her last birthday in November, she relayed to me that was not her birthday that day, but that her birthday was not until next September. I knew better than to correct her; I just said “Oh okay.” However, when she then asked, “Now who are you? Mom or dad?” I have to admit, I was thrown by this question. I wasn’t sure how to respond. As much as I read up on Alzheimer's and dementia, there still so much more to learn. The disease fascinates and amuses as much as it discourages and disappoints. It continues to grant me opportunities to learn something new.