Caring for Workers Who Care for Our Loved Ones

From the blog called “Working in These Times“.

 

For many seniors, growing older means facing new kinds of stress—such as fragile health, a tight budget on a fixed income, or the travails of living alone.

And for the people who care for the aging, the stress can be just as severe. When her client is going through a rough time, one domestic worker says she lives through every minute of it, too: “Sometimes we stay there for five days…and we don’t know what’s outside…You cannot leave the job.”

Stories like this one, recorded as part of a survey of New York’s care workers, form the invisible pillar of an evolving industry that is making the private home the center of public health, and in the process, reshaping our relationships of family, work, community and social service. Yet the home care workforce, which is driven largely by poor women of color, mirrors inequities embedded in the low-wage economy. At work, caregivers manage the lives of our loved ones while often facing exploitation and abuse, and after a long day of delivering comfort to vulnerable clients, many struggle themselves to cope with ingrained poverty their communities.

To open a conversation about the economics and ethics of caregiving, ALIGN (Alliance for a Greater New York) has partered with the national advocacy campaign Caring Across Generations, along with various community and labor groups, to study New York City’s more than 150,000 home care workers. The surveys and investigations published by ALIGN reveal structural problems in the industry and identify potential for reforms that work for those who give and those who receive care.

In New York, the home care industry is booming as more seniors opt to live at home rather than in institutions. Thousands across the city earn their living by taking care of seniors and people with disabilities. Overall, according to the study, the sector “will be the single biggest driver of employment in the city in the coming years.”

On a typical day in New York, these workers, mostly women of color and immigrants, act as both therapists and companions, managing medications, bathing and feeding, and helping seniors feel dignified even on the days they can’t get out of bed. On top of this, the workers have to negotiate with stressed families about hours and pay–and typically take home low wages that keep them and their families mired in poverty.

And yet it turns out that consumers and providers of care want the same things. ALIGN’s surveys of New Yorkers, including both caregivers and care “consumers,” show strong concern about decent pay for workers, along with retirement and healthcare benefits. These labor conditions are many cases dictated by insurance companies and Medicaid, not by the families receiving care.

The fact that consumers and caregivers both recognize that labor should be fairly valued “really does challenge this zero-sum notion that good jobs and affordable care can’t coexist,” says ALIGN policy analyst Maya Pinto. “And it suggests that people understand the connection between the quality of care and the quality of jobs.”

The converse is also true: When workers are miserable, it shows up in their work. Nearly 40 percent of people receiving care complained that the quality of services was “fair” to “very poor.”

But from a workers’ standpoint, this is the consequence of a job that treats them poorly. One worker described her situation bluntly: “It is a very difficult job at times because there are patients who think the home care workers are slaves.” Workers reported being subject to verbal and physical abuse, sometimes racial slurs, on the job.

Nonetheless, many care workers feel deep devotion to their job—they just want to their labor to be appreciated and duly compensated. “I do my work well…and the person I care for is very satisfied with my work,” said one worker. “It is very dignified work but it needs to be paid better.”

A priority across all respondent groups was providing appropriate training and monitoring–indicating that workers, contrary to stereotypes, are not instinctively resistant to greater accountability and oversight, and that all stakeholder groups realize the depth and complexity of responsibilities involved in caring for vulnerable seniors.

One area of divergence between consumers and workers was the importance placed on career advancement. The issue was a higher priority for caregivers, especially domestic workers who serve seniors but lack the official credentials of “formal sector” workers—a category that includes certified “home health aides” and “home attendants,” and who are generally employed through an agency. Lacking the formal qualifications associated with specialized, better-paying positions, domestic worker-caregivers (who are disproportionately low-income immigrant women, both documented and undocumented) often remain stuck in the most grueling, precarious jobs.

Some of New York’s privately employed home care workers benefit from a recently enacted domestic workers’ “Bill of Rights” that provides stronger workplace protections and wage standards than does federal labor law. However, domestic workers overall, who include nannies and housekeepers as well as direct caregivers in private households, still suffer from poverty, discrimination and exploitation. According to ALIGN’s survey of caregivers’ household incomes, about nine in 10 domestic workers earn less than $25,000 annually, compared to six in 10 formal sector workers. That is, despite the strides that domestic workers made with the Bill of Rights, in material terms, they still lag behind those employed through agencies or with more formal credentials.

ALIGN recommends several reforms to ensure dignity for both caregivers and people receiving care. More training and certification options–such as programs equipping domestic workers with emergency medical skills–would expand workers’ access to more formal and higher-paying positions and lift up standards for the workforce overall. On a policy-making level, the report calls for a expansion of publicly funded insurance programs so care workers, many of whom cannot afford medical coverage, can safeguard their own health as they care for others.

Since so many families struggle to pay the cost of community-based elder care, especially if they fall outside the income-eligibility bracket for Medicaid, the report recommends a more comprehensive publicly supported insurance program as an alternative to private long-term care plans. Noting that the current rollout of the Affordable Care Act and Medicaid overhaul present an opportunity for fudamental reforms in home care funding, ALIGN suggests creating a broadly accessible long-term care benefit that would be funded through payroll contributions, like Social Security.

The report also highlights why workers need not just laws but organization and collective bargaining power. In recent years, SEIU and the National Domestic Workers Alliance have organized tens of thousands of workers to win fairer contracts for workers and to press for reforms to extend labor protections for care workers. Meanwhile, some workers are changing how care is delivered in their communities by forming their own cooperatives.

ALIGN cites the worker-owned cooperative model as a system that can empower caregivers, by enabling them not only to share in the ownership and profits of the enterprise but also to access training, negotiate better working conditions, and “improve compensation for workers while keeping the cost of care relatively low.” One impressive case study is New York’s Cooperative Home Care Associates, one of the country’s leading cooperatives with about 2,000 workers, half of whom own a part of the business.

Despite the sometimes harsh conditions, Vilma Rozen, a 52 year-old home care worker, remains unshakably devoted to her job and embraces the challenges. “If you want to take care of elderly people, you have to keep your feelings very in touch [with] the person, because the elderly people in some cases are very alone and very depend[ent],” she says. At the same time, she adds, many seniors “suffer so much, because the home-carers, they have a very sad life, very underpaid… They don’t have happiness.” Rozen, a native of Costa Rica, says that if Americans want to place their elders in the care of attentive, dedicated people, “they need to change the system.”

Whether they give or receive care, everyone wants dignity–both seniors and their aides want to look forward to seeing each other every day in a relationship of mutual respect. The labor issues in senior care show the consequences of neglecting shared needs, but also open space for creating a fairer system of care, by making the home a more welcoming workplace.

ABOUT THIS AUTHOR

Michelle Chen is a contributing editor at In These Times, a contributor to Working In These Times, and an editor at CultureStrike. She is also a co-producer of Asia Pacific Forum on Pacifica’s WBAI. Her work has appeared on Alternet, Colorlines.com, Ms., and The Nation, Newsday, and her old zine, cain. Follow her on Twitter at @meeshellchen or reach her at michellechen [at] inthesetimes [dot] com.

Association for Frontotemporal Dementia (AFTD) Annual Conference

The AFTD will host its 2014 education conference and annual meeting in White Plains, New York on Friday March 14 for those affected with FTD, caregivers and health professionals. My father and I are thinking about driving over to White Plains.

WHAT:
AFTD’s 2014 Education Conference and Annual Meeting
Featuring Keynote Speaker Robert Bazell, former chief science and health correspondent at NBC News

 
logo1Click here for an agenda of the conference

WHEN:
Friday, March 14, 2014 from 10 a.m. – 6 p.m. with evening social to follow

WHERE:
Crowne Plaza – White Plains
66 Hale Avenue
White Plains, NY  10601
914-682-0050
Reserve a room from AFTD’s block - use passcode “Y8E
Travel Instructions to Crowne Plaza

HOTEL INFO: 
Rooms start at $129/night plus all applicable taxes
Self-parking is $7 per day

COST:
There is a $50 registration fee for healthcare professionals.  Caregivers, those affected and their families may attend at no charge.

REGISTRATION:
Click here for online registration!

TRAVEL GRANTS:
AFTD offers modest financial assistance to family caregivers and people with the disease to attend an FTD education conference. The grants may be used to defray the cost of travel, lodging, conference fees and/or respite for your loved one in order to attend. For more information see the application materials.

SPONSORSHIP OPPORTUNITIES:
Corporate Sponsorship Information Packet
Individual Sponsorship Information Packet

Article: A Lesser-Known Dementia That Steals Personality

This is an article from The Atlantic

 

It was the annual Labor Day tradition for the Savini family, a makeshift version of The Gong Show performed before the neighborhood on a wooden deck stage at their beach house in Massachusetts. In past years, Nicole Savini’s mom and friends dressed up in nightgowns as the housewives version of The Supremes, singing “Stop in the Name of Love” into wooden spoons.

To the Savinis each year, it’s seriously funny business—as if they’re performing at the Apollo, said Nicole, 36, whose humorous background has influenced her sensibilities at The Colbert Report on Comedy Central, where she is a senior producer.

The theme this year involved a tongue-in-cheek skit on global warming, with the family singing rewritten lyrics to “Don’t Worry Be Happy,” complete with a fake weathercast warning of Sharknado’s arrival, as well as the Lobster-pocolypse and Clamageddon. Nicole’s dad, John, dressed up as a shark from Jamaica.

But one person was emotionally absent from the production, though physically present: Nicole’s mom, Kathy.

For most of Nicole’s life, her mother would get into the spirit of “The Gong Show,” dressing up in costume, practicing the choreography and lines. Instead, this year a special seat had been reserved for her among the lawn chairs in the audience, and while everyone else cracked up, Kathy didn’t react.

Five years ago, Nicole’s mother — who had always been an attractive, clever, fun-spirited woman — began zoning out and overeating. She eventually stopped laughing at the family’s wisecracks. Kathy had worked as a librarian at a local school for a decade, but she started snapping at the kids in a manner that was out of character, saying things like, “I’ll break your fingers if you touch that again.” The Savini family, always quick with one-liners, might have found it funny if Kathy had been joking — except she wasn’t.

 

 

Nicole’s mother lost her filter. She talked about sex to strangers. She used to be able to dish out flattery. “You look fantastic in that bikini,” Kathy would say, making a woman’s day. Now, she mentioned if she thought someone was fat, right in front of them. Meanwhile, other people’s sarcasm slipped right by her. She just didn’t get the quips anymore.

It took many months, and some Internet research, for the family to get a diagnosis. Her mother’s change in behavior was caused by a little-known disease called frontotemporal dementia, a neurological disorder centered in the frontal lobe of the brain, the part responsible for our behavior and emotions. While Alzheimer’s usually affects older people, and is detected as a person begins to lose memory, frontotemporal dementia causes people to lose their personalities first, and usually hits in the prime of their lives — the 30s, 40s, and 50s.

Over the last decade, new research in patients with frontotemporal dementia and other illnesses, has helped neuroscientists understand more about the roles different parts of the brain play in where our personalities come from.

A study released in October by Dr. Brad Dickerson and colleagues at Harvard Medical School in the Journal of Neurology, Neurosurgery & Psychiatrypinpointed regions in the brain that showed atrophy from frontotemporal dementia and found that those with the most damage to the “perception network” (amygdala, orbitofrontal cortex, superior temporal, and fusiform cortex) also showed the most prominent difficulty responding to social cues, facial expressions, and eye gaze, and had the most trouble interpreting gestures and body language—the kind of cues that sarcasm relies on.

Frontotemporal dementia patients with the greatest deterioration in the “affiliation network,” (involved in motivating a person to connect with others and generating rewarding feelings during social interactions) exhibited the most severe social and emotional detachment, and patients with the greatest damage to the “aversion network” (involved in detecting and avoiding untrustworthy or threatening individuals) became more willing to trust strangers, and in some cases gave away private personal information despite negative consequences.

 


Journal of Neurology, Neurosurgery & Psychiatry

 

On the surface people with frontotemporal dementia might still seem normal, able to hold a job, and talk to people about the weather. But those traits that family and friends know and love—such as empathy, shyness, shame, pride, or wittiness—begin to disappear.

“What it steals are the things we value most as human beings. The desire to tell our family we love them, the ability to control our behavior, the very essence of who we are—our personality,” said Susan Dickinson, executive director of The Association for Frontotemporal Degeneration, a national nonprofit organization based in Pennsylvania.

As the disease invades parts of the brain, patients’ altered behaviors have helped researchers understand how embarrassment comes from the pregenual anterior cingulate cortex. Or how recognizing sarcasm can be traced to structures in the temporal lobes, according to UC San Francisco researcher Kate Rankin, who has studied frontotemporal dementia patients.

Nicole’s mom’s diagnosis was especially ironic, given their close-knit, funny family in Marshfield, Massachusetts. Sarcasm had always been a central element of Nicole’s life, leading her to produce satirical segments for Stephen Colbert’s show, like this one on Maine’s missing scallop gonads, which, today, would go right over her mom’s head.

There are moments now when all Nicole can do is laugh at how simultaneously tragic and hilarious her mother’s illness is. She sees absurdity in situations that her mother can no longer grasp. Lately, Kathy has been obsessed with opening people’s mailboxes. “We keep telling her it’s a federal offense,” said Nicole.

Then, Kathy will open another.

“Mom what is that?”

“Federal offense,” she will reply in a monotone. “Federal offense.”

“People say all the time that comedy comes from tragedy,” Nicole said. “If you can’t laugh, you’re just going to be crying all the time. But it’s an overwhelming disease. You are really helpless. There is no medication, no road map, no end in sight.”

* * *

An estimated 50,000 to 60,000 people in the U.S. are diagnosed with frontotemporal dementia, although experts estimate that many more suffer from the condition but have not yet received a correct diagnosis, according toThe Association for Frontotemporal Dementias.

The symptoms are often wrongly blamed on alcoholism, depression, menopause, mid-life crises, stress, or schizophrenia, and patients can go through years of negative tests for other ailments like cancer, strokes, and syphilis before learning the truth about what is actually wrong. People living with frontotemporal dementia, are unaware that they have even changed. But for loved ones, sometimes it’s like living with a stranger.

It affects each patient’s character differently. A proud CEO and dedicated father could one day start walking around with his pants down, or stealing candy from a convenience store without embarrassment or shame. A devoted girlfriend might nonchalantly tell her partner intricate details of past relationships with other men.

 

 

Nurse and medical anthropologist Jill Shapira, who works at the University of California, Los Angeles with frontotemporal dementia patients and their families, recounted the story of a husband who had always been loving and kind. One day, his wife fell on the floor. As she was sprawled on her back, he stood over her and asked, “When’s dinner?”

“I’m lying on the floor here,” she replied, “Aren’t you going to ask me how I am?”

He replied, “How are you?” Followed again by, “When’s dinner?

Shapira spoke of another wife who was diagnosed with breast cancer and ended up in the hospital for surgery to have the tumor removed. Her husband didn’t even visit. Instead, he called and asked, “When are you coming home? The house isn’t clean.”

“That’s often a wake up call,” Shapira said. Spouses tend to think their partner is having an affair, or has lost interest in them. “First you get pissed. Then you say this isn’t him. This isn’t the person I married.”

* * *

Kathy fell in love with John, when they were teens, after he wooed her while playing a comedic role in a high school play, “The Perfect Idiot.”

“I was the star, but I was not the idiot,” Nicole’s dad told her recently, when she asked about their love story. Nicole’s mother had told her that she fell in love with John because “he was such a ham.”

“I don’t remember her saying I was a ham,” John replied. “I think she might have said she was impressed by my talent. I don’t remember the word ham coming up, just talented maybe.”

When prom came around, John wasn’t going to ask Kathy. He planned on asking another girl, because he had asked Kathy out once before in 9th grade, and she said no. She had to work. But after he impressed her with the play, Kathy told him she needed a date. “She decided I was going to ask her,” he said. “I was Project Prom.” After they ended up dating, he asked her about the 9th grade rejection. Kathy said very matter-of-factly that she did, indeed, have to work that day.

Growing up, Nicole’s dad was the biggest joker of all.

 


Nicole Savini (far right) with her sister, brother, dad, and
mom (left to right) (Courtesy Nicole Savini)

 

He would spend months making up lyrics and skits for “The Gong Show,” which has involved various family members and neighbors dressed as cowboys, Vegas showgirls, or news reporters in ponchos caught in Hurricane Earl, replacing the lyrics to “My Girl,” with them singing, “My Earl.” One year, Nicole’s dad dressed up a rapper, “L.L. Bean.”

One of the first telltale signs of Kathy’s illness was the weight gain. She shoved food into her mouth without restraint. Once, as Nicole prepared a birthday cake with M&Ms, her mom reached in to grab a handful.

“Don’t, they’re for the cake,” Nicole told her.

“Okay,” her mom replied, and then put them in her mouth anyway.

It was clear to Nicole then, her mom clearly had lost control of her behavior. She also became apathetic, and had trouble organizing her shelves or keeping appointments. She gained 100 pounds in a year.

At first, doctors thought it could be sleep apnea. But Nicole’s sister, Catherine, didn’t buy it. “I got kind of pushy with the neurologist,” Catherine said. “I made my mother go back to make another appointment, even though she didn’t want to…I remember crying to my mother, saying, ‘I just think something is wrong and I think you need to go.”

Kathy just stared at her daughter, seeming unemotional. But Kathy knew enough at the time to say what diagnosis she did not want. “I just don’t want to lose my mind,” she said. “I just don’t want Alzheimer’s.”

After a series of brain scans, doctors called the family before the Fourth of July weekend in 2008 to let them know they had figured out the real culprit. It was not Alzheimer’s or Parkinson’s. It was frontotemporal dementia. Kathy began seeing a specialist at Massachusetts General Hospital. He showed the family scans of her brain. It looked like there were black holes in some parts behind the eyes and close to the ears, where cells had shrunk and died. And the holes were getting bigger.

Rankin of UCSF, has conducted tests on patients with frontotemporal dementia and other brain diseases, putting subjects through video tests featuring actors who recite lines in a sitcom style like, “No of course you don’t look fat,” (when he does), or “I’d be happy to do it. I’ve got plenty of time.” (when he doesn’t). The patients had to observe facial expressions, voice patterns, gestures, and posture, to determine the speaker’s intended meaning, from cues like eye rolling and exaggerated voice prosody, and then answer questions about their sincerity or sarcasm.

Rankin’s and others’ research has shown that the underlying neurological layers of sarcasm involve regions of the superior frontal gyrus, which is involved in self-awareness, decision making, and laughter, as well as the medial and anterior temporal lobes, which have been indicated in language processing and integrating information about attitudes, intentions, and emotions. Understanding more complex forms of sarcasm can also require parts of the brain involved in empathy and reading other people’s mental states.

 

 

Other scientists have found that 70 percent of frontotemporal dementia patients showed damage to brain cells called von Economo neurons, found in the anterior cingulated cortexes, which are involved in self-awareness and socializing.

“Studies like these shed light on the ways that specific social skills are hardwired into our brains to a greater extent than people previously would have believed,” said Rankin, “which is why a disease like frontotemporal dementia can make someone act like a completely different person.”

Dr. Bruce Miller, who heads the University of California, San Francisco Memory and Aging Center, believes these discoveries in the brains of frontotemporal dementia patients will also one day influence how psychiatric disorders are treated, like depression, bipolar disorder, or ADHD. “If you don’t develop these fine-grained assessments of emotional deficits in psychiatric patients, you’ll never understand them.” Brain research is important for frontotemporal dementia patients. “It’s even more exciting for the psychiatric diseases, which are more common.”

When she was first diagnosed, Kathy didn’t want to know about what would eventually happen to her personality, brain, or body. She did not want to read about frontotemporal dementia, and she never did. She didn’t realize she was losing precious parts of her character, and there was a comforting relief in that for her daughters. It became the family’s burden instead.

As she got sicker, mornings became a regular routine of washing Kathy’s hair, helping her get dressed, and seating her in front of the television to watch her favorite show, Dr. Oz, while eating a bowl of oatmeal.

For the first three years, Nicole occasionally caught glimpses of her mother’s familiar humorous nature. The disease had not yet destroyed her mom’s ability to laugh, though sometimes it felt like her laughter was on cue, or in reaction to other people’s laughing.

On a road trip two years after the diagnosis, Kathy told John that she was looking out for dead animals on the side of the road.

“Oh, hon, I didn’t realize you were so hungry,” John joked.

Everyone was surprised that Kathy laughed.

Another time, Nicole tried to get her mom to put on her pants by singing the hokey pokey. Her mom cracked a smile.

“I see her wake up, it’s almost like I can see the neuro-whatever-you-call-thems firing in her brain,” Nicole wrote in an essay. “She’s back and she’s with me. And, for a moment, I am with my old mom, the one with a sharp wit, who can clearly see that, frankly, I look ridiculous.”

Occasionally, Kathy still made jokes. Once, she wore a fake leopard skin coat and announced, “No animals were harmed in the making of this coat.” She went out to dinner and with her daughters, who ordered mussels. Kathy said, “I don’t like mussels unless they’re on dad.”

Kathy’s deterioration took longer for John to accept. At first, he continued going on vacations with her, as if life was normal. They went to Niagara Falls, and John made an appointment for Kathy at the spa, while he went golfing. Kathy went for a walk instead, stopping at an ice cream cart, where she started to eat without paying the vendor, who got so upset he called the police.

 

 

When officers arrived, Kathy told them, “Well, I don’t have $4. Are you going to arrest me for eating ice cream?”

The next day John tracked down the ice cream man to give him the $4. That was when he learned he could no longer leave her alone.

Another day, Nicole and her dad opened the door on Kathy and saw that in an attempt to wash her face, she had actually covered her arms and face with shaving cream. Nicole and John burst out laughing. They looked at each other for approval like, “Can we laugh about this or not?”

Humor has helped guide Nicole and her family through the challenges of dealing with her mother’s personality changes. In the beginning, John told Kathy, “We’ve laughed every day up to this point, so why don’t we just laugh our way through the rest of the way?”

But parts of the disease are just not funny. Nicole knows that people do not recover from frontotemporal dementia. Most are expected to live only 10 years after the initial onset. In the meantime, their symptoms only worsen.

In New York, Nicole joined a support group for families whose loved ones have the disease. As soon as Nicole arrived, she said, “Just so everyone knows, I’m not interested in being here.”

At one point, the social worker asked everyone to say something unexpectedly good about what had happened since the diagnosis. When her turn came, Nicole said, “There’s nothing. I’m not going to make something up. I don’t think there’s a thing.”

Her family was no longer the same. She used to look forward to going home, and now it only made her stressed out. Her old mom was gone.

Other people were more positive. They talked about their families becoming closer, about recognizing what most others take for granted, and of learning to take care of themselves first, even before sacrificing for their loved ones.

Bullshit, Nicole thought.

But she kept attending the meetings, making friends with people like Deanna Angello, whose father also suffered from frontotemporal dementia. Together, they commiserated. Deanna’s father had been a music aficionado, with a vast collection, but he lost interest in listening to his albums. He was also a huge fan of “Seinfeld.” At every chance he could, Deanna’s father would go into the minute details of the last episode he saw, referring to George, Kramer, Elaine, and Jerry like old friends.

“He could recite any episode ever made,” Deanna said.

One day, about nine months after the diagnosis, Deanna went home and noticed that he had lost interest in “Seinfeld” too. He didn’t find the show funny anymore and would stare apathetically at cartoons, never changing the channel.

“How do you move forward with your life?” Deanna would say to Nicole. They would talk about feeling guilt for living their own lives, when their parents’ lives seemed to be withering away.

 

 

Nicole took a month off work to help care for her mother. “I went into Stephen’s office and started crying.” Colbert hugged her and said, “Calm down, whatever it is.” When Nicole went home, she realized her mother was losing her ability to carry on a conversation.

The prognosis only seemed to get darker. The Savinis learned that frontotemproal dementia can be passed down hereditarily. Nicole found out that there was a chance she may have inherited the protein that causes it. But she refuses to take the test to determine whether or not that could actually be the case. She does not want to know. Neither does her sister.

Five years after the diagnosis, Kathy doesn’t make jokes or laugh at them anymore, not even in a knee-jerk reaction kind of way.

“But there are moments,” Nicole said. “They are fewer and farther between, but sometimes they still exist. They come out even when you think all is lost.”

This past Thanksgiving, Catherine’s 2-year-old son closed himself in a closet and then pushed open the door to surprise his grandma. Kathy giggled.

It was the most instinctual reaction to a child’s cuteness. The kind of reaction a baby might have to a game of peek-a-boo.

A more complex kind of humor would have been lost on them both, since the ability to both fully recognize and interpret sarcasm does not develop until age seven, as researchers have shown.

To Nicole, her mother’s reaction to her grandson seemed innate. As Kathy’s nature becomes increasingly stripped down to the basics of humanity, like a baby, Nicole and her family’s love for her remains innate too.

Something about Kathy’s grandson brings out a softer side. Kathy no longer hugs her adult daughters, Nicole said. But she lets her grandson sit on her lap. He smiles at her. And every once in a while, she smiles back.

I don’t know how to help my parents

Mom is still ticking along, although she’s so much thinner and grows even more thin each day. She started this at 3X and has now shrunk to a Medium. Mom’s never been this thin in my memory. It is frightening.

I got a full-time job in November (2013). Started on the 18th. I was laid off on the 24th of December, but that’s another story.

I needed to stop caregiving, because I couldn’t do what it required. Mom’s sorta beyond the incontinent phrase now. They still bring her to the bathroom and sometimes she goes, but most often it’s the full-on excrement in the diaper thing. Lately it’s been coming at night so Dad has to face that every night.

There are the hospice caregivers, because we’ve now been in hospice for six months, and they come for three hours per day, seven days a week. After months of revolving door people, we finally have a fairly set team.

Maria – Tuesday and Thursdays, she is reliable and wonderful and tough and has taught us much

Amy – Mon/Wed/Fri – she is flake. Great on her first day, so I lobbied to get her and she turned out to be a flake. I don’t know that she’s worked all three days since she started with us.

Claudette – Sat/Sun, every other week. She’s young and fantastic.

Bertha – Sun/Sun, every other other week. She is in her sixties and is the only one who has the patience to sit there for two hours to feed Mom an entire meal. Which Mom eats.

 

Then there are the paid caregivers, to fill in the gaps:

Sarah – Tuesdays, Wednesdays, Fridays – Who’s been with us for a year as of this past November. Dad adores her and she is good with Mom.

Lesli – Mondays, Thursdays – She is young and this is her first caregiving job, but she seems to be good with Mom. She talks a little too much to the social worker, saying that Mom is having great days. The stupid social worker goes back and says Mom is fine and healthy and that’s just STUPID, but the nurses know better. Still, the social worker has a hand in the decision to continue hospice. They make that decision every two months.

 

And Dad fills in the rest. I have a 45 minute commute to work, so I have not been getting up to the house often. That means Dad is on his own. I know he’s not been feeding himself very well – sometimes just eats shredded wheat for a week – because he’s so tired from working full-time and taking care of Mom. He can cook but it’s just one more thing to add to the list and after the heart attack, he seems to get more tired more easily – although Mom has gotten worse, too, so that’s added to it all.

I don’t know how to help. The one area where he needs help, the diaper changing, is the one area that is stressful beyond all measure. I can’t do it. Or, if I did, I think my heart would explode or I’d have a stroke from the blood pressure spike. I’d start screaming and not be able to stop – and that has happened. I had to stop.

Making food for them doesn’t really work all that well, because Mom eats like a bird and Dad may or may not feel in the mood for what I make. Plus, he may not be willing to heat something up. He’ll buy premade meals from the grocery store and put those into the microwave, but if I make him something he generally doesn’t heat it up and it gets thrown out. He will eat it if I’m right there and making him sit at the kitchen table to eat. He’s often eats standing up while he’s walking around trying to multitask.

It’s winter. He still wants to empty the attic, but he wants to do it all on the same day. I wish he would take a more consistent, box by box approach. Why do people want to do Herculean labors all at once and wear themselves out, especially when they are exhausted already?

It scares me that he is always saying he’s tired. He talked like that in the months leading up to his heart attack. So, I expect he will have another at any time. The fear of it puts a grip around my heart and it’s hard to manage that pain. Losing both parents at the same time.

I can help him by feeding Mom dinner. I could make the effort to go up there and do that more often. But right now that’s awkward as I don’t have a job and I don’t particularly feel like being grilled about it and about my prospects for the future.

And so there we are. Caregiving becomes more and more difficult in ways that you didn’t expect.

Article: Love Story: One couple’s journey with dementia

Love Story: One couple’s journey through the travails of dementia

By: Beth Rickers, Worthington Daily Globe

Let’s hang on to what we’ve got

Don’t let go, girl; we’ve got a lot

Got a lot of love between us

Hang on, hang on, hang on to what we got

Dooh doo, dooh doo, dooh doo …

In the video posted on YouTube, that classic 1965 song by The Four Seasons plays while a woman giggles and sways to the music. Although the lyrics are significantly poignant, the woman doesn’t sing along. She can’t, because dementia has impaired her speech.

The woman is Elaine Morrison, and the guy behind the video camera is husband Terry. For almost a decade, they journeyed together through the obstacles posed by frontotemporal dementia disorder until Elaine died in March of this year.

This is their story.

Boy meets girl

Terry and Elaine met as students at Worthington Junior College. Terry had just been discharged from the U.S. Air Force. Elaine had come there from her hometown of Windom.

One of Terry’s friends pointed out the pretty girl with the almost waist-long hair while a band was playing in the college Commons.

“‘See that girl?’ She kind of likes you,’” recounted Terry about how his friend goaded him into talking to her. “So I asked her to dance.”

One of Terry’s favorite pictures of Elaine was taken by a Daily Globe photographer during a peace rally they organized on the steps of the Nobles County Courthouse.

“We had kind of that hippie vibe,” said Terry. “We lived together for two years, and then she got pregnant. My dad said, ‘You’ve got to get married.’”

Finally heeding dad’s proclamation, Terry and Elaine were married in 1971 and had three children: Lee Morrison, who now lives in Staples; Jada Morrison Walker, Westminster, Colo.; and Ryan Morrison, Sioux Falls, S.D.

Terry and Elaine were both employed in human services, beginning their careers as house parents of the McMillan Street group home for the disabled in 1976.

“We always worked as a team,” said Terry. “Even at home, we always shared the housework, although we each had a few preferences.”

Eventually, Elaine became the director of the Ridgewood group home for the disabled, and for the past 23 years Terry has been administrator/CEO of New Dawn, which also provides services for disabled individuals. Together, they coordinated Worthington’s Community Thanksgiving Dinner for 22 years.

The onset

Changes in Elaine’s speech patterns first signaled something was amiss.

“I would guess it was about 10 years (ago) that the disease began making itself known,” Terry estimated, “although it was probably already happening before that. … When the speech started, we realized something was wrong, and then her driving got to be odd. Jada has a story about when they were going somewhere together, and Elaine just let go of the wheel and bent down to get something.”

Initially, Elaine was diagnosed with Alzheimer’s disease, but Avera neurologist Dr. Carol Miles changed that after watching some video footage that Terry shot of Elaine’s behaviors.

“She sat and looked at the whole video — how many doctors take the time to do that? — and then she wanted me to restart it,” Terry recalled. “Miles wasn’t buying the Alzheimer’s anymore. She took Elaine and walked her up and down the hall.”

The neurologist narrowed the diagnosis down to three possibilities, and further testing determined it was frontotemporal dementia.

“I looked it up, and it was dead-on, just so accurate,” Terry said. “… It’s a little bit rare and may strike women a little more than men. It’s different than Alzheimer’s — all of the dementias are different, have different effects on the brain — but people tend to lump them together.”

One of the distinguishing characteristics of frontotemporal dementia is its effect on the person’s language skills. According to information from the Mayo Clinic, “Frontotemporal dementia is an umbrella term for a diverse group of uncommon disorders that primarily affect the front and temporal lobes of the brain — the areas generally associated with personality, behavior and language. … Some people with frontotemporal dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally different, while others lose the ability to use and understand language.”

Staying home

From the onset, Terry was determined to care for Elaine at home, no matter what the dementia brought.

“We tried a few of the early meds, but didn’t see any effect,” he said. “So we just said the hell with it — no medication. It’s not going to cure it, anyway.

“There are all these phases, and with each new phase, you have to think about it and prepare for it. I went through denial. I was not going to accept it for a while. I had to work my way through the denial of the changes. … At first, Elaine would just watch TV. I would be gone to work, and Elaine would watch TV, but then the wandering started.”

On one memorable day, Terry got a call from a local eye doctor’s office, saying Elaine was there, brought there by an unknown woman because she had a bill from the doctor in her hand.

“She was our first angel,” Terry credited the stranger. “You think of angels with wings and a halo, but this woman saw Elaine standing on the corner, and Elaine had this paper in her hand, this bill. Elaine would do that, had this thing with papers, and somehow she found this bill. So I asked (the receptionist) to put the woman on the phone, and after she explained what happened, I asked if she would take Elaine home.”

While her husband was involved in a special work project, Jada and her children returned to Worthington and lived with her parents for a year, providing Terry with extra help and a sounding board for coping with Elaine’s issues. They determined hiring a home care worker would be the best course of action. Initially, they hired two people from a large group of candidates, but it became apparent that one of the workers had a great rapport with Elaine.

“Brittany Mejia was our backup, working one day a week, and we asked if she’d take over,” Terry related. “She became our angel No. 2. She was very interested in doing things with Elaine. … Brittany just fell in love with Elaine. One day I asked her to come over so we could discuss something. Elaine was standing by the front window and saw her car pulling into the driveway. She turned around and had a big smile on her face and almost ran to the door. That was all the validation I needed.”

While there were good days and bad days, caring for Elaine at home was much easier than it could have been as her dementia progressed.

“She made it easy in so many ways,” Terry reflected. “I’m the one who set the goal for her to stay at home and not go into a treatment setting. She made it as easy as could be.”

Maintaining a daily routine and keeping a daily journal of activities and behaviors helped Elaine and her caregivers cope with the dementia process. Terry would find things in which Elaine found delight — a song on the radio to which she could dance, soap suds from the kitchen sink, a tiny Hot Wheels car that he would scoot across the countertop — and many such moments were captured on YouTube videos, as well as one of the infrequent emotional outbursts.

Being his wife’s chief caregiver posed some interesting situations for Terry, particularly when they ventured far from home.

“… I took her everywhere I went — on trips to Colorado, doing things with the grandkids,” Terry detailed. “After 2½ hours of driving, we’d pull into a rest stop, and I’d been helping this woman with virtually everything, but which bathroom do I take her in — the men’s or the women’s? If I took her into the women’s, I figured the women would get a bit upset about a man being in there, but I figured if I took her in the men’s, the guys would probably look over and say, ‘Whatever.’ I would always peek in and make sure there weren’t a bunch of guys standing at the urinals. … It’s funny the things that you get used to doing.”

Terry’s own work in the human services field helped him cope with some of the more hands-on aspects of Elaine’s care.

“If I’d been an insurance salesman, it probably would have been more difficult,” he said. “But I also tend to be patient and calm and have a way of tuning out in stressful situations. But it’s one thing to have that background, and another to deal with the emotional part of it.”

The decline

Eventually, Elaine began to eat less and less and was dramatically losing weight. Terry consulted a dietitian, who encouraged them to let Elaine eat whatever she wanted — even a steady diet of fast food, if necessary.

“I’d say I’m now an expert smoothie maker,” Terry said. “I’d make them with all kinds of different things, and she would drink those. Some days she’d eat well, some not. … I went and looked deeper into frontotemporal disorder and found out it affects your swallowing reflex. She really got thin — looked like the photos you see of people who were in Auschwitz, and I realized this is more than a phase. She would barely drink juice.”

After consulting with medical professionals, Terry decided it was time to pursue hospice.

“Brittany did not want to hear the word hospice,” Terry recalled. “She worked really hard to get her out of that phase. I emailed the kids and told them, ‘In my opinion, your mom is dying’ and encouraged them to do what they needed to do. … When a person stops eating and drinking, you figure they’ve got three weeks, four weeks at most. So they came, and during that week, they helped me help her die.”

Son Ryan moved the bed from upstairs to the main living area, and they filled the space with flowers, candles and new-age music. One day, she was able to sit on the couch for 20 minutes and watch one of her favorite TV programs, “The Andy Griffith Show,” and the next she went into a coma.

“After a week of this struggle, I got a little (mad),” recounted Terry, adding that the kids had left the house at that point. “I would never call myself a religious man of intense faith — I’ve always been faith-challenged, not that I don’t have faith — but my few earnest prayers have almost always been answered. So there I am, on my knees, asking God, ‘Why does this struggle have to continue?’ and 10 minutes later, she died.”

After initiating the calling tree process that had been decided upon, Terry changed his wife’s clothes, combed her hair, put pennies over her eyes to help them close and called the hospice worker who had to confirm the death. He also called the funeral home, but asked the director to hold off on removing the body.

“The kids arrived, and they each had some time with her, alone and together, and this is where I have an epiphany,” Terry related. “We’re going to get three chairs, a bottle of wine, and sit there and talk, and that’s what we did for about seven hours. There was this big bouquet of flowers, and Jada took one flower at a time and arranged them over her mom’s body. As she did that, Elaine’s face just changed — it softened, and she got a little smile.”

The Morrisons also took an unorthodox approach to Elaine’s funeral arrangements — including being hands-on with the cremation process.

“(The funeral director) told me, ‘If you want, you can put Elaine into the crematorium,’” Terry said. “I thought, ‘What the heck? I’ve done everything else.’ … So I finished putting her into this thing. It was really clean and white. I just envisioned it like the grave. … There was one last button to push, and I pushed it.”

Instead of a funeral or memorial service, the Morrisons planned a celebration of life for Elaine, including readings by her children and grandchildren. Granddaughter Emma played “Amazing Grace” on the violin. For the lunch following, they served tuna and noodle casserole — one of Elaine’s favorite dishes to cook.

It’s now been four months since Elaine’s death, and Terry continues to deal with the grief process that began with her diagnosis.

“I used to say to people, ‘Elaine isn’t there anymore,’ but later, after she died, I realized I was wrong,” he reflected. “What was there, that’s the real pure person, not the intellectual stuff. Parts of her personality had changed, but the raw, real person was still there. She made it easy for all of us, and I regret saying that. I didn’t realize it wasn’t true until later.”

Daily Globe Features Editor Beth Rickers

can be reached at 376-7327.

Article: Dementia patients’ emotional link lost

Original article located at: Dementia patients’ emotional link lost

From:
Dan Harrison
Health and Indigenous Affairs Correspondent
Australian researchers have demonstrated that some dementia patients lose the emotional content of their memories, explaining how they can forget emotionally charged events like weddings or funerals.

A team from Neuroscience Research Australia discovered that a region of the brain called the orbitofrontal cortex plays an important part in linking emotion and memories.

It is well established that people more vividly remember events infused with emotion, such as birthday parties. But people with frontotemporal dementia (FTD) – a condition that affects the frontal and temporal lobes of the brain – have difficulty understanding and expressing emotion.

The research team showed patients images that prompt an emotional reaction in healthy people.

Advertisement

While healthy subjects and patients with Alzheimer’s disease remembered more emotional than neutral images, FTD patients did not.

One of the researchers, Associate Professor Olivier Piguet, said the findings, to be published in the journal Brain on Monday, would help improve how different types of dementia were diagnosed.

”This is an important development in how we understand the relations between emotions and memory and the disturbance of the emotional system in this type of dementia,” Professor Piguet said.

Another researcher, Fiona Kumfor, said the findings would help carers better understand why their loved ones might find interactions difficult.

”Imagine if you attended the wedding of your daughter, or met your grandchild for the first time, but this event was as memorable as doing the groceries,” she said. ”We have discovered that this is what life is like for patients with FTD.”

FTD is the second most common degenerative disease causing dementia in younger adults. It typically affects people in their 50s or 60s but can develop in people as young as 30.

Read more: http://www.watoday.com.au/national/dementia-patients-emotional-link-lost-20130707-2pk8w.html#ixzz2YT9Y0BLL

Hospice Begins

Slightly freaked out. Nurse Mary just left. Social worker Linda is coming at noon, Dad tells me. Mary called me and Linda called him. Mary was here for a basic nurse check-in. No idea why Linda’s coming. Mary was able to tell me that it takes a week or so, typically, to get set up for home care. Hah! I told Dad that it wasn’t going to start today.

People needed for study on risk factors for Frontotemporal Dementia

Risk Factors for Frontotemporal Dementia

This study hopes to learn about genetic and non-genetic factors that may be involved in FTD. We will use information from clinical testing, neuropsychological testing, blood DNA, and MRI imaging to ascertain subtypes of FTD, and to find genes that might be associated with these subtypes. This study invites persons diagnosed with FTD or related disorders, as well as unaffected family members, to participate.

For more information, please contact Masood Manoochehri at (212) 305-5710.

 

This is from Columbia University’s Taub Institute in New York City, NY, USA.

Think I might just give this fellow a call. I could take a train into the city.

Clinical Trial to study Tolcapone for Frontotemporal Dementia

Study of Tolcapone for Frontotemporal Dementia

This study will test if a medication called tolcapone (Tasmar®) can improve the symptoms of frontotemporal dementia (FTD). It will also test the utility with FTD.scan called fMRI for detecting changes that occur in the brain when a medication reduces symptoms and the effect of a common genetic variant on the symptoms of FTD. Men and women who have been diagnosed with FTD and are 40 to 85 years old may be eligible to participate.
For more information, please contact Masood Manoochehri at (212) 305-5710.

This is from Columbia University’s Taub Institute in New York City, NY, USA.

My Mom can’t tolerate trips to NYC anymore, but maybe this will help someone.

Mom just surprised the heck out of me…

Mom just surprised the heck out of me. I was giving her a smoothie; she was perched on the edge of the bed. She drank about half of the smoothie. But then she actually stood up, by her own power, turned herself around and got back in bed. I was astonished. Go figure.

This morning’s smoothie:
- 1 cup of Silk Coconut Milk, Vanilla Flavor, for the MCFAs
- a tablespoon of Sunwarrior Warrior Blend Protein Powder, Vanilla flavor, Raw, Vegan, for the full blend of amino acids
- a handful of baby spinach leaves
- about a 1/3 of a cup’s worth strawberries & bananas via Yoplait Smoothie
- about three large strawberries

I put them into the blender in this order and proceeded to turn this mixture into a frappe. Lovely. Tasted fantastic. Made about 12oz.

I have to remember my color rules. Too much green with the red and you get yourself a brown milkshake, or you get purple if you’re using strawberries. This came out a pinkish tan color.