Facing Alzheimer’s With Family

Facing Alzheimer’s With Family

Posted on Wednesday, July 30th, 2014 at 8:43 am by lifemediamatters

The Genius of Marian intimately explores the devastating effects of Alzheimer’s disease on a close-knit Northeastern family. The documentary, directed by married couple Anna Fitch and Banker White, focuses on Banker’s 61-year-old mother who is struggling with early-onset Alzheimer’s disease.

The film, made of blurry home movies, one-on-one interviews and family photos, opens with a scene from their 2009 Christmas celebration. Pam White offers her family a jar of macadamia nuts, but mistakenly refers to them as “acadania nuts,” foreshadowing a sharp decline in her cognitive abilities.

Pam, a former model and social worker, often smiles and retains a sense of elegance throughout the film’s most difficult moments. In one extended scene, she is unable to remember how to put on her coat and scarf. In another, she struggles to enjoy a fishing trip at the lake, to the annoyance of her husband, Ed, who serves as her primary caregiver. Not one scene is glamorized.


Pam White faces early-onset Alzheimer’s. Still from “The Genius of Marian.”

We learn that in 2008, Pam decided to write a book about her mother, acclaimed painter Marian Williams Steele, who died in 2001 from complications associated with Alzheimer’s. One year into the project, Pam was diagnosed, and was never able to finish it.

“I’ve never made a personal film before. The desire to move home, because we were based in San Francisco, was initially to help my dad out and make sense of things,” Banker told Life Matters Media. “I think it became clear that it could be a very powerful thing to share with other people. The film even helped our family communicate better.”

Anna first became acquainted with Pam through the earliest video recordings. “It made me think about my relationship with my parents,” she said. “I thought this would resonate universally.”

Early in the film, Pam seems to be in denial about her diagnosis. In a tense scene recorded while driving, Banker asks if she remembers her mother’s decline. “She had Alzheimer’s, and I don’t,” she replies. “Didn’t the doctor say that you did have early-onset Alzheimer’s?” Banker asks. “Careful!” Pam says, focusing her attention on the road. She is upset because she can no longer simply take the car and drive to the grocery store.

“There are definitely things that are awkward, but in a documentary you are tasked with managing a relationship between you and your subjects and being honest with the audience,” Banker said. “Alzheimer’s is such an isolating disease, because of the stigma attached with it and the requirements it puts on caregivers.”

According to the Alzheimer’s Association, nearly six million Americans face the irreversible disease, a number expected to increase as the baby boomer generation ages. Nearly one in six women 65 and older will be diagnosed in their lifetimes.

One of the most difficult effects of Alzheimer’s on family and friends is the slowness of the decline, Banker added.

“You are constantly reminded of who this person used to be, while you’re simultaneously losing this person, so there is no space for mourning. You are kind of overwhelmed with the responsibilities of caring and redefining your relationship,” he said. “But there is also a special side, because it does give you time. Some of the most special moments with my parents have happened over the last four years.”

Anna said she believes a lack of hope and response from patients is one of most difficult parts of the disease. “You’re caring for someone who is able to give you less and less as things get more difficult, and that’s just hard,” she added. “There is also no room for hoping it will get better, that there will be a better path ahead.”

In an effort to help patients and families share their experiences, Anna and Banker said they hope to launch an interactive story sharing website in the coming weeks.

The Genius of Marian, an official selection of the 2013 Tribeca Film Festival, will be broadcast across the nation Sept. 8 as part of the PBS series POV.

Casey Kasem’s End Of Life Drama: A Lesson For The Rest Of Us

Posted on Tuesday, June 17th, 2014 at 8:24 am by lifemediamatters

This piece was first published in Reuters Health. LMM President Randi Belisomo is a contributor.

The dysfunction and drama of the final months of Casey Kasem, a radio personality who died Sunday from complications of dementia, captured the interest of generations who listened over the years as he counted down the nation’s top pop.

But what Kasem did for four decades on the radio, says end-of-life planning expert Nancy Berlinger, is what he failed to do with his own family before dementia rendered him unable: communicate.

Kasem’s advance directive, stating he did “not desire any form of life-sustaining procedures, including nutrition and hydration,” assigned his daughter as surrogate healthcare decision-maker.

His daughter’s authority, however, was contested by her stepmother, Kasem’s wife. Allegations of kidnapping and starvation played out in courtrooms. Kasem’s wife performed a dramatic interpretation of a Biblical scene for news cameras, throwing raw meat in the street in exchange for her husband “to the wild rabid dogs”- her stepchildren.

Kasem’s situation was “a doozy of a case,” added Berlinger, lead author of The Hastings Center Guidelines, a framework for end-of-life decisions.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

Kasem did take “two steps most people don’t,” Berlinger told Reuters Health. “He authorized a proxy decision-maker, and he gave specific information about treatment preferences.”

But, she pointed out, broadly-stated medical options in advance directives often require further considerations about real-life issues. “There may have been the assumption the document would have magically taken care of everything,” Berlinger said.

Kasem’s directive stated his wish for no life-sustaining treatment if it would “result in a mere biological existence, devoid of cognitive function.”

Berlinger said preferences should prompt patients and families to discuss points at which life loses individual meaning; examples include an inability to communicate or address hygiene. Those changes in condition can signal times when life-sustaining measures may be suspended. Without conversation, preferences may be unclear. “What does it mean to have ‘no cognitive function’?” Berlinger asks.

The way to answer that is to ask the patient directly, said Daniel Johnson, a Kaiser Permanente Care Management Institute palliative care specialist. “It’s not uncommon for people making decisions to do it alone,” Johnson told Reuters Health. “The problem is the best-laid plans depend not only on medical infrastructure, but infrastructure of the family.”

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The End Of Life Lessons From Casey Kasem’s Family Feud

Posted on Monday, June 16th, 2014 at 11:42 am by lifemediamatters

This piece was first published in Voices in Bioethics. LMM President Randi Belisomo is a contributor.

American music fans have lost an icon. In recent weeks, the dysfunction and drama of the last days of Casey Kasem, a radio personality who gained fame counting down the country’s top pop, pervaded national headlines. Though family infighting among the famous was certain to capture the media’s interest, such conflict is sadly not unique in end-of-life cases such as his. Those who followed this saga stand to learn a much-needed framework of multi-party communication from what went wrong here.

The Case

Kasem, 82, suffered from Lewy body disease, a progressive dementia. In 2007, he signed papers extending power of attorney for his health care to his daughter Julie; the directive stated Kasem’s desire for no “life-sustaining procedures.” However, Julie, her sister Kerri, and their brother contended that Kasem’s wife since 1980, Jean, prevented them from visiting their father.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

In May, Kerri won court approval to see Kasem. However, Jean expressed displeasure to reporters, playing an audio recording of a groaning man she maintained was her crying husband. Jean threw meat in the street, citing scripture as an ambulance took her husband away. “In the name of King David, I threw a piece of raw meat into the street in exchange for my husband to the wild rabid dogs.”

The drama continued in the courtroom, where Kerri won temporary conservatorship. But Kerri was unable to execute such responsibility without knowing his whereabouts; according to Kasem’s children, he was “isolated from his daughters, friends and other family” by his wife.

A judge later decided Kerri had the right to honor his directive to withhold food, hydration, and some medications, and she opted to transition him into hospice. Kasem’s children released a statement, quoting his advance directive:

“If the extension of my life would result in a mere biological existence, devoid of cognitive function, with no reasonable hope for normal functioning, then I do not desire any form of life-sustaining procedures, including nutrition and hydration.”

Jean opposed this decision and promised to pursue all legal options on her husband’s behalf. Her attorney maintained that Kasem was being “starved and cut off from medicine until he dies.”

What Went Wrong

Family conflicts regarding end-of-life decision-making are common; as such situations would be stressful for any family. That stress was amplified, in this case, by the media spotlight. Conflicts in such stressful times often arise because patients have not expressed their wishes and values regarding their health care, and patients also fail to appoint surrogate decision-makers.[1]

But in this case, the patient took proactive steps to ensure his care preferences would be clear. Kasem appointed a surrogate and documented his wish for no life-sustaining measures.

Though he completed paperwork, it seems that what Kasem did for a lifetime through our radios is what he failed to do within his own blended family: talk.

The facts suggest the strained relationship between Kasem’s wife and children was such for years, and this conflict was one he should have seen coming. Without such conversations explaining his wishes and reasons behind them, Kasem deferred conflict to a later day – and that day arrived.

Conflict was inherent upon completion of his advance directive, as Kasem’s surrogate and main caregiver were different individuals. Kasem was obligated to take that difference into account and ensure both parties understood the scope of their roles.

“You want to communicate this information,” says Nancy Berlinger, a lead author of the Hastings Center Guidelines.[2] “It’s a problem when a person makes an advance directive, and the only person who understands its context is their lawyer.”

Not only would Kasem’s surrogate be empowered with greater understanding of the values upon which his preferences rested, his family infrastructure would have likely been strengthened by such personal disclosures with all parties gathered.

“If you really want to look at how to prevent situations like this, you need to have these conversations with not only surrogates, but with other loved ones,” says Daniel Johnson, the National Clinical Lead for Palliative Care with Kaiser Permanente’s Care Management Institute. “When people take the time to have those informed discussions with family to ask the right questions to explore preferences with all important parties, you almost never see this.”

Kasem’s family would have received guidance about their roles from the patient himself, and perhaps they would also have understood exactly what he meant by his desire for no life-sustaining measures if “devoid of cognitive function.” While Kasem’s daughter believed he was in such a state, his wife’s vow to pursue legal action suggested she understood his condition differently. “There may have been the assumption that this document would have magically taken care of everything,” says Berlinger.

Unfortunately, end-of-life planning is often reduced to a “check-box” approach of medical options, with little understanding among patients and families as to what options actually denote. What does it mean to “lack cognitive function”? What is it to have a “mere biological existence”? More detail is required than loosely stated preferences, and the way to ascertain the meaning of those preferences is to have asked Kasem directly.

At their best, these conversations should expand beyond treatment preferences; discussions should explore considerations of real-life issues. Examples of these considerations are descriptions of what made Kasem’s life “worth living” – quality of life discussions to unravel what he valued. Was it the ability to communicate with loved ones? Perhaps the capacity to hear the music he played for generations of young Americans? The ability to maintain his own hygiene? We never knew, but his family should have.

When we read cases like Kasem’s, we are best served by allowing his tragedy to prompt our own end-of-life planning. Complete your advance directive, and if you already have – locate it. Discuss its contents with key loved ones, explain their roles, and let them know how they may best ensure your preferences are executed. We all can play disc jockey of our health care choices: don’t let your broadcast include dead air.

[1] Teno JM, Licks S, Lynn J, et. al. “Do advance directives provide instructions that direct care? SUPPORT Investigators.” Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Journal of the American Geriatrics Society [1997, 45(4):508-512].

[2] Berlinger, N., Jennings, B., and Wolf S.M. (2013) The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition. Oxford University Press, 2013

Facing Alzheimer’s Together

Posted on Saturday, March 8th, 2014 at 9:53 am by lifemediamatters


Carrie and her father, Henry George Jackson Jr.

Carrie Jackson spent the better part of her twenties caring for her ailing father who was suffering from severe Alzheimer’s disease. As her father’s primary caregiver, Carrie spent years watching his health decline and managing his care.

Henry George Jackson Jr. died in 2012, after nearly three years in hospice care. Carrie currently serves in the Memory Care unit at the Mather Pavilion in Evanston, IL, and she is on the Junior Board of the Alzheimer’s Association. She contributed an essay set to be published next month in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. 

Why did you choose to share your experiences of caring for your father?

Jackson: Alzheimer’s is the sixth leading cause of death in the United States, and no one knows that. It’s also severely underfunded.

People think it’s a memory disease, but it’s so much more. It’s language, it’s perception, it’s judgement, and it ultimately shuts down the entire body. End-stage Alzheimer’s is non-verbal, requiring total care, involving hallucinations and terrors, and people not being able to move their limbs. It’s a horrible, horrible disease.

Caring for dad really changed my life. I was in my mid-twenties and my friends were dating and going on job interviews and getting married and having kids, and I would always be like ‘I have to leave early to go to the hospital.’ I was his advocate, and he really didn’t have anyone else. So, I feel that I need to share.

What is the hardest part of caring for an individual suffering from Alzheimer’s or dementia?

Jackson: There becomes less and less that the person afflicted can do for themselves. Early-stage is really difficult because they argue with you and hide things. When I first started taking care of Dad, I looked at his check book and I found that he had not paid rent in three months. He was making donations to anyone who would solicit him, so donations to the Republicans, to the Democrats, and even to the Ross Perot Party.

I remember there was a big fight when I had to take his keys away after he failed his driving test for the third time. That was the only time we almost got into a physical altercation.

It was very hard telling him he could not go for walks by himself anymore, because he might not know how to get home. He also had some colorful words that he would use on a regular basis while on the streets of Evanston. He developed an irrational fear of sprinklers, so every time he saw one he would swear at it and at the person who put it there. People didn’t understand that it was the disease talking, not him.

Henry George Jackson Jr. died in 2012. He was a celebrated WWII veteran.

Henry George Jackson Jr. died in 2012. He was a decorated WWII veteran.

What advice do you have for adult children caring for seriously ill parents?

Jackson: You have to find support, you have to. It sounds so cliche. It helps to relate to someone going through a similar situation. Sometimes you don’t need an answer, you just want someone who will listen to you, someone you can vent to and be like ‘this sucks.’

After witnessing your father’s decline, do you fear Alzheimer’s?

Jackson: Alzheimer’s is my biggest nightmare. I am just absolutely scared of it.

At work we try to create moments of joy for those facing it. I do Alzheimer’s training for the new volunteers, and I tell them that a beautiful thing about the disease is that the person afflicted has no recollection of the past and the future doesn’t mean anything. If you say lunch is in 20 minutes, it doesn’t mean anything. They live and are truly engaged in the moment. I try to make that moment positive; the best thing we can do is make them happy.

Read an except from her essay here

Soup For The Soul: Living With Alzheimer’s

Posted on Thursday, March 6th, 2014 at 8:19 am by lifemediamatters

Carrie Jackson

Carrie and her father, Henry George Jackson Jr.

Life Matters Media was given permission to share an excerpt from Carrie Jackson’s essay set to appear in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. Jackson’s father died from Alzheimer’s disease in 2012, after nearly three years in hospice care. Jackson serves in the Memory Care unit at the Mather Pavilion in Evanston, IL, and on the Junior Board of the Alzheimer’s Association. Her essay recounts an afternoon visit to her father in his nursing home.

Chicken Soup

The Hand that Feeds
By Carrie Jackson

Music is one of my best ways to communicate with him so I start singing to him about Daisy and the bicycle built for two. My pitch and tone are way off, but I don’t care. It’s one of our favorite songs, and after a minute his eyes open. I ask him if he’s ever ridden a bicycle built for two. He says no, and I remind him how he used to put our dog Rusty in the grocery basket of his old bike and give him rides around Evanston. Finally, I get a smile. Then the moaning starts again.

I ask where it hurts: this time, it’s his shoulders. Jeff says he’s already had his pain medicine and we’re waiting for it to kick in. I ask Jeff if the hospice volunteer came today. He says yes; Dad says no. I believe Jeff. I put on some music. Ellington. We’ve changed the words a bit.

In our version, it’s “If you want to get from Sugar Hill to Harlem, you better take the A train.” We sit. His hands are soft. Softer than mine. His arms are splotched with purple and red marks. I take note of a few new bruises and cuts.

It’s dinnertime, and lately Dad has been taking his meals in his room. Jeff brings in some soup. Tomato barley. I stir it, taste it, and scald my tongue. After a few minutes it’s ready and I ask Dad to open his mouth. He does, takes a bite of soup and makes a horrible face but it stays mostly in his mouth. He chews for almost a minute and I wonder how that’s possible. I don’t see him swallow, but the chewing stops. I try with another spoonful, and another. Four more bites and he’s had enough. The bib is covered with spills. I wipe his mouth and nose. I haven’t seen him eat this much in months. Jeff brings in his plate.

Chicken and mashed potatoes. I know Jeff usually ends up feeding him Ensure, yogurt, and dessert—that seems to be all Dad will take these days. But I’m here, so we try for solid food and whole nutrition. And he eats. It surprises even me, but his eyes are closed and he’s reluctantly accepting every bite I bring to his mouth. Chew, chew, drool, chew, spit, moan, chew, swallow.

With each bite I feed him, I am reminded of what his doctors and the hospice team keep saying—as long as he has nutrition and is able to take food, he could survive for quite some time. And I think of the pain he is in. And I think of the loneliness in his eyes when I’m not there. And I wonder if what I’m doing is helping or hurting. He is chewing, swallowing, digesting. He is surviving. But is that what he wants? Is it worth it?”

Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias will be released April 22, 2014.