Dementia: Personal Experience

 

Image by Abhijit Bhaduri
via Creative Commons 

When I was pursuing my master's program in gerontology between 2010 and 2013, I decided to focus on issue of cognition and aging. My understanding of age-related causes of aging was very academic. Yes, I did volunteer at a multi-level care center for five years, but that pales in comparison with having a relative living with significant cognitive challenges. 

85th Birthday Celebration on Mother's Day

 

Donna Webb Lloyd's
85th Birthday

I was born in Utah, and I attended college in Utah, but I haven't lived here since the early 1990s.  I often miss family milestones. However, I live just 90 miles away from where we celebrated my mother's 85th birthday this year.  

It was a great blessing to attend.  

My mother and step-father live in an assisted living center. They moved there in the fall of 2019.  I have five step-brothers, and four of them also live in Utah (but not in the same county). 

Prepare for Your Care: A Free Resource for ACP

Photo by programwitch via Creative Commons.

Because I teach in the College of Nursing and Health Professions at the University of Southern Indiana, I have the opportunity of working with several experts. This semester, I was privileged to work with Dr. Kevin Valadares, an expert in medical ethics and hospital administration.

Under Dr. Valadares' direction, I was able to participate in Advanced Care Planning (ACP) with my students (Health Care Continuum & Community Services). Sometimes people call ACP by other names, such as Living Will or Advanced Directive.

News report on ACP Grant

USI's description of this project

These are legal documents for establishing whether or not you want curative care or specific types of medical interventions such as CPR, a breathing tube, a feeding tube, or even antibiotics in the case of pneumonia or another infection.

Many people recoil from having such conversations. However, others have watched families struggle to determine how to respond to a serious medical problem suffered by a loved one who can no longer express his or her wishes.

Even a very young person can suffer a life-threatening injury or acute medical condition. While people of any age can live with a chronic illness, this is more prevalent among older adults. As a gerontologist, I have observed many people who have a chronic condition that takes a turn for the worse, rendering them incapable of articulated their wishes.

How Can You Learn about Advanced Care Planning? 

I recently went through the Prepare for Your Care resource. The Regents of the University of California host this site, but experts from a variety of universities, hospitals, and other organizations have helped prepare the information.

Women Rowing North: Book Review

Published January 15, 2019. 

Mary Pipher has written a book for women in the second half of life.

Women Rowing North: Navigating Life's Currents and Flourishing as We Age was published in January of 2019.

I was happy to get my hands on the book in March. Pipher, who is in her early seventies, does describe her own approach to meeting life's challenges; however, she introduces us to dozens of women. A handful of these appear throughout the book.

She also brings in some quotes and describes some research findings. However, she chiefly tells stories about herself and others.

I read Women Rowing North over four days: one day for each of the sections:

Our Souls at Night: Film Review

Released September 1, 2017.

Having read Kent Haruf's novel, I was eager to see how Our Souls at Night was adapted to the screen.

The film maintains the same slow pace and understated story, but the film alters the ending to make it more open and upbeat.  By doing so, it erases the powerful message that adult children shouldn't interfere in their parents' relationships. Harrumph.

Nevertheless, it's great to see a film that portrays mature love.  Addie (played by Jane Fonda) and Louis (played by Robert Redford) are neighbors in a small town in western Colorado, but they never really talked to each other.

This changes when Addie asks Louis if he would like to spend the night sleeping beside her.  She's not asking for sex; she's asking for companionship.  He thinks about it and then agrees.

This begins the journey of these two opening their hearts--or their souls--to each other.  They share key stories of their lives, express their desire to be closer to their children, confess regret for actions from decades past.

I would have preferred that the film stay true to the novel, but it's still a triumph to have a film that depicts older adults and their point of view, their challenges, their concerns.  The leads (b. 1936 and 1937) deliver powerful performances in every word, action, and look.

Related:

Our Souls at Night: Book Review

Celebrating Grandmothers: Book Review

Published September 3, 2014. 

Have you ever wanted to go on a three-day retreat with a couple of dozen women who are introspective about the life stage of "grandmother"?

Ann Richardson gives you this experience without the cost and inconvenience of travel in her book Celebrating Grandmothers: Grandmothers Talk about Their Lives (2014).

Richardson transcribes interviews conducted with 27 women from the greater London area.

They come from a diverse background and have various viewpoints about grandmothering. And their experiences differ.

Some have the opportunity to do a lot of very hands-on grandparenting. Others have to innovate on how to do long-distant grandparenting.

The women interviewed have an array of relationships with their child, their child's spouse, and are part of a diversity of extended family structures.

The book is organized into the following sections:

Big Fish: Film Review

Released: December 10, 2003.

Big Fish (2003) ranks as one of my all-time favorite films.

Yes, it contains themes related to aging.

However, many elements of the film are pertinent to people of all ages:

parent-child relationships (particularly father-son conflicts), courage, family legacies, truth vs illusion, coping with illness--and more.

The bottom line: WATCH THIS FILM!

I rewatched this film on Father's Day weekend with one of my teens.

What was my takeaway this time?

Big Fish illustrates this phenomenon: family members each hold their own version of reality.

My past viewings were informed by my decades of work in English departments.  In 2013, I earned a gerontology degree.  Between my new paid work and upcoming life changes, I'm looking less at the artistry and more at the family roles.

I'm now a midlife person who is launching a young adult son while offering (pitifully inadequate) long-distance support to aging parents.

(Young Edward from birth through childhood is played by more than one character, but the greater portion of the flashbacks are portrayed by Ewan McGregor; late-life Edward is played by Albert Finney. The adult son is portrayed by Billy Crudup.)

Tinkers: Book Review

Published January 1, 2009

Paul Harding won the Pulitzer Prize for Fiction in 2010 for his novel Tinkers, a story about three generations of men from New England.

We meet George Crosby, a clock repair man.  From the start, the novel focuses on time, memory, and perspective.  George is suffering from delirium as a mature man in his last six weeks of life.  This leads to some shifting perceptions between past and present, reality and fantasy.

This is a book that I read slowly, wanting to live in the moments that he creates on the page.

Readers are next introduced to George's father, a salesman. Every fall and spring, Howard stocked up a wagon full of goods and traveled through back roads with his mule, selling to impoverished country people and making very little profit.

Howard is a poet at heart, but between the demands of providing for his family and the difficulty of dealing with his epilepsy, he lives a far less elegant life.

9 Realities of Caring for an Elderly Parent: Book Review

Published 2014 by Pressman Books

At first glance, I expected 9 Realities of Caring for an Elderly Parent to be a guidebook, filled with objective lists and a lot of information on how to contact government resources.

Then I started the book. It's more of a caregiver's memoir.

Finally, I noted the subtitle: "A Love Story of a Different Kind." That was my big hint, and I skimmed past it. However, author Stafania Shaffer shares the tender feelings she experienced over five years of caring for her increasingly dependent mother.

[Note: I receive a review copy of this book in exchange for a fair and honest review.]

The books starts when Shaffer discovers that her widowed mother is living in a cluttered, unhygienic home.  Shaffer's mother is having trouble maintaining her finances, her diet, and her own cleanliness and grooming.

After making these observations, Shaffer takes on the task of caring for her mother, first from a distance of two hours until she can secure a new teaching job and move back into her childhood home.

Somebody Stole My Iron: Book Review

Published 17 January 2014.

Supporting one parent through a chronic illness is challenging enough. Author Vicki Tapia chronicles her experience supporting her father through Parkinson's Disease and her mother through Alzheimer's Disease.

Her book is called Somebody Stole My Iron: A Family Memoir of Dementia, published 17 January 2014, available on Amazon.

Tapia's parents are having more and more trouble managing the basics. As the only child living locally to her parents, Tapia helps her parents through a couple of moves--from their home to assisted living to a skilled nursing center.

Most of her memoir discusses her mother's problems with memory, mobility, language and self-care.  Her father is a quiet man who rarely complains. Her mother is more outspoken, determined and demanding.

It's difficult to walk the line between respecting her mother's desire for independence and her mother's need for safety.

Tapia learns again and again that her mother's can present an illusion of capability that exceeds the reality.

I'll Be Me: Film Review

Released 24 October 2014.

After experiencing some difficulty with his memory for several years, Glen Campbell received a formal diagnosis of Alzheimer's Disease in 2011 at age 75.

About the same time as this diagnosis, Glen Campbell and his wife, Kim Campbell, invited a camera crew to film "behind the scenes."

The resulting documentary--Glen Campbell: I'll Be Me (2014)--is a tribute to this musical legend and an honest-yet-dignified view of the challenges of living with Alzheimer's Disease.

The documentary is filmed over about a year and a half; however, clips of performances over several decades are included as well.

The resulting documentary is a blend between a celebration Campbell's career and an exploration of how Alzheimer's affects a person's day-to-day life.

Olive Kitteridge: Book Review

Published 25 March 2008.

Olive Kitteridge is greater than the sum of its parts.

For this reason, I struggle to fully explain my response to this intriguing novel, presented as a collection of 13 interconnected short stories.

I can gesture to some of the novel's strengths: the structure is ornate yet easy to read, the setting of Crosby, Maine well supports many of the themes, the characters are at once odd and recognizable, and the treatment of aging is complex.

Notably, Olive Kitteridge (2008) by Elizabeth Strout was awarded the 2009 Pulitzer Prize for Fiction.

Also, HBO aired its award-winning mini-series, Olive Kitteridge, based on the novel and starring Frances McDormand as the title character.

It took me seven years to finally pick up a copy of the book so that I could answer the question "Why all the fuss?" for myself. I thoroughly enjoyed reading this book.

The Theft of Memory: Book Review

Published 2 June 2015.

Jonathan Kozol, teacher, writer and activist for education reform, writes a compelling memoir about the years he and his father, Dr. Harry Kozol, spent together from 1994 to 2008.

The Theft of Memory: Losing My Father, One Day at a Time (2015) starts with the onset of Dr. Kozol's symptoms of Alzheimer's Disease and continue until his death at 102.

This dementia memoir distinguishes itself by being very academic in its approach.  

Both father and son are nationally recognized in their fields. Because this memoir reflects their professions, I suspect that readers will either love it or find it a bit too cerebral.
 

Beginners: Film Review

Released in the US 3 June 2011

Beginners (2010) is a quirky family dramedy, starring Ewan McGregor, who plays Oliver Fields, a 38-year-old graphic artist trying to overcome his grief of losing his mother and then responding to his widower father coming out as gay.

Christopher Plummer earned an Oscar for Best Supporting Actor (and several other awards) for his role as Oliver's father, Hal. 

I loved everything about this movie: the characters, the themes, the editing, the screenplay, the setting. It was lovely. Oh, and the dog, Arthur, will steal your heart.

It took me a while to select it from my queue of over 160 films about aging. But last night it popped up on THREE categories of recommended films--Independents, Quirky Romances & Critics' Picks. So I caved and watched it.

Delightful!

This film is based on director/screenplay writer Mike Mills' own experience. Like Oliver, Mills' dad coming out as gay shortly after his wife dies of cancer.

In the present, Oliver meets Anna, a French actress played by Mélanie Laurent.  His relationship with her is interrupted by two sets of flashbacks.

Death In Slow Motion: Book Review

Published February 3, 2004

Eleanor Cooney admired her mother Mary Durant for being cool, stylish, intelligent and sophisticated.  Her mother's core personality traits were dismantled once Alzheimer's Disease started to take its toll.

In her memoir Death in Slow Motion  (2004), Cooney relays an enormous amount of detail regarding her mother's illness and its affect on Eleanor.  Despite Eleanor's best efforts, her mother was lonely, grieving, agitated, clingy, weepy, and complaining.

Interspersed between accounts of Mary's hardships are details about her interesting and sophisticated life during the decades prior.

Mary worked as a writer, editor and for a time a model. She lived in New York City for a time before residing for decades in Washington, Connecticut.

Scar Tissue: Book Review

Published January 1, 1993

In 1993 Canadian author and politician Michael Ignatieff published a novel about a family's response to early onset dementia.  Scar Tissue was short listed for the Booker prize the following year.

Armed with this information, I decided to track down a copy of the book.  The narrator is one of two siblings adjusting to their mother's increased confusion.  The family also includes their father, a soil scientist and an immigrant from Russia. The mother is a painter.

The two brothers take different approaches to their mother's illness as influenced by their vocations.

The narrator is a philosopher. He saturates himself in images, emotions and theories. He mulls over the way dementia alters a sense of self, relationships and the ability to cast one's own life into a narrative.  He's on a never-ending quest for meaning.

His brother takes a more pragmatic approach by trying to identify the disease as it alters the material landscape of the brain.

Since Otar Left: Film Review

Released 17 September 2003

Jim, a filmmaker acquaintance of mine, recently recommended Since Otar Left (2003) to me, so I moved it to the top of my viewing list.  The fact that it won the Critics Week Grand Prize at Cannes the year it was released certainly didn't dissuade me from viewing it.

Let me start with the end: I bawled for a good twenty minutes when the movie concluded.  It gave me a greater appreciation for the strengths that older adults often possess -- but that others often fail to acknowledge.

I don't want to spoil the movie.  Just rent it. I will tell you that it's an art house film.  The pacing is slow, and the significant details are more subtle.   It contains an essence of realism, in my opinion, mimicking the way most of us experience life in small details that become significant through reflection.

In an effort to retain the film's power, my review has to be a bit vague.  Let me just draw your attention to a few aspects of the film.

A Legacy of Pioneer Mothers

My great-great grandmother Mary Ann Ward Webb
front and center with her children. Taken 1924.

My house echoes with the voices of my pioneer ancestors. I am a fifth generation Mormon woman, and I feel this ancestry often.

Whether I'm cooking dinner, folding laundry, teaching my children or doing my devotional reading, I think about my fore-mothers daily.

In fact, I named my daughter after two of my pioneer ancestors: Mary Ann and Clara.

This is a Midlife Boulevard Blog Hop. Because the 37 links below will disappear soon, I am saving three for future reference:
@piaSavage of Courting Destiny describes a Good Cop, Bad Cop mothering moment
@LynnCobb shares a double dose of mother's intuition birth story on her blog.
@loisaltermark of Midlife at the Oasis marvels at her mother's sense of style 

The Night Guest: Book Review

Published Oct. 1, 2013.

Beyond the glowing fires of home and hearth are a number of horrors we prefer not to examine too closely. However, the Halloween season turns my attention towards things that we usually try to shove into closets, stuff under beds, and lock into attics.

By purposefully attending to our fears during Halloween, do we hope to overcome them? How can we fight the elements that inhabit our worst nightmares?

In an effort to better guard myself against the scarier aspects of aging, I picked up a copy of The Night Guest by Fiona McFarlane.  Her novel asks, Can an older adult manage her own life? Or is she too frail, vulnerable, and weak? And scarier still this question:  Is an older adult even incapable of perceiving her own situation accurately?

In this 241 page novel,  we meet Ruth, a 75-year-old widow living with her cats in a beach house on an isolated stretch of the Australian coastline. Ruth has two sons, but they live abroad: one in New Zealand, the other in Hong Kong.

For a few years following her husband's death, Ruth has created a comfortable routine in her cozy, little beach cottage.  But then one night, she senses the presence of a tiger in her home.  Is something really moving around in the darkness of her home? Is it just one of her cats? Is she merely dreaming? Or is she losing her mind?