Friday, March 28, 2014

When Simple Things Become Overwhelming

When dementia strikes, even the simplest things can be overwhelming.

This was the case with my father who had a habit of postponing making decisions until later.
When I think of it, my father constantly put things off until later. My mother used to remind my father (he called it nagging) to take care of things, now. “Mardig, check the car now, before we leave for California,” she’d remind him each weekend before our summertime Wisconsin to California trip. He’d reply, “I’ll get to it, later.” Long after I went to bed, he worked on that car in the dark to make sure our old 1967 Pontiac was dependable enough to make the cross-country trip.

In 1976, a month after I graduated from high school, I sat in the back seat nervously waiting for the Pontiac to break down. It was only a matter of time and it was embarrassing for a teenager to witness her mother begging for help each time. Despite the many patches my father put on that car, we managed to cross the Mojave Desert in the predawn hours with no incident, and after touring Hollywood Hills, we landed square in the middle of Beverly Hills where the old Pontiac gave up after overheating.

My mother figured people in the Hills would be gracious but no one was willing to help as she went from house to house. It wasn’t until we ended up in the poorest area of Los Angeles (where people fear to tread) that we met the kindest caring people who ensured we had what we needed and were safely on our way.
Years later, and after my mother passed, dementia began stealing pieces of my father’s life. Try as hard as he did to hold on, the big D’s power could not be subdued.

After I came to visit him in Wisconsin for what would be the last time, I found a few of those pieces he had set aside to look at later.
One of them yielded a surprisingly significant windfall…

Don’t laugh too hard when you watch this, because we all set aside things to deal with later. Soon, they’re long forgotten until we take steps to clear the clutter out of our lives.
Click here to watch The U.S. Saving’s Bond Windfall – $100,000 on a bookshelf a brief 3-minute video excerpt from the Porterville Adult Day Center’s Annual Caregiver Conference. (I apologize for the poor audio and the video composition.)

Or click on the image below.





Thursday, March 27, 2014

The Overlooked Caregivers No One Ever Talks About


 

The Overlooked Caregivers No One Ever Talks About


Although it was more than five decades ago, the memories of caring for my grandfather as a pre-teen—giving him medication, even bathing him—are never far from my mind. To this day, 54 years later, I can still feel his cold skin as I went to give him his 2:00 am medication.

At that time, words like "abandonment" and "trauma" were not often used to describe childhood experiences.

I left home to become a nurse and grew professionally in my career. However, the traumatic experiences of caregiving and missing out on some of my childhood left me less than grounded.
In 1998, at the First International Conference on Caregiving in London, I learned about the challenges faced by youth caregivers and began to understand the significance of those experiences.
That summer, I went on a mission trip with teens from my church—one boy's dad had recently died and another girl's dad had pancreatic cancer. Many of the other kids also had concerns about their parents and grandparents' health.

In 2001, my new husband, encouraged me to return to school to get my PhD, thinking it would increase my earning power. During the research process, I discovered that there was—for the first time in the U.S.—an unusually high number of middle and high school students who were dealing with family health conditions. More than a third of these children were negatively impacted at school. A few more years would pass, and the data (along with some media attention) revealed that there were between 1.3-1.4 million caregivers, ages 8-18 years old in the US.

In 1998, I had started a nonprofit organization to provide volunteer support services to people who were homebound and their caregiving families. Once the analysis of my research data was complete, I was compelled to now turn my attention to youth caregivers. I thought that, supporting them academically and personally, and strengthening their families, could perhaps ameliorate the sacrifices they were making because of their caregiving responsibilities.

Thus, the Caregiving Youth Project was born in the fall of 2006, at one middle school in Boca Raton, FL. Professional staff facilitate support groups, offer classes on life skills, and provide other resources to ease some of the responsibility and give youth caregivers the chance to be kids.

Dementia Signage for the Home

 



When My God is Better Than Your God

Image courtesy of (David Castillo Dominici) / FreeDigitalPhotos.net
 


“Religion is the sigh of the oppressed creature, the heart of a heartless world, and the soul of soulless conditions. It is the opium of the people.”
— Karl Marx 1844

It is the actual quote that has been misquoted through the ensuing years as “Religion is the opiate of the masses…”

Whatever its context, find a corner of the globe where religious persecution or adherence hasn’t led to wars, conflicts and imprisonment or worse and you’d find a utopia few of us will ever see.
Likewise, some of our most famous and comforting artworks, memories and family traditions have been formed by and wrapped in a warm cocoon of religious tradition.

So why then is religion so reviled by some and fiercely defended by others — either end of the argument almost always a no-win scenario in a barstool conversation or a full-out, staged debate among intellectuals? Because, as we see from the breakdown of the world’s populations, everyone thinks their God is the right God.

The CIA’s World Factbook (yes, THAT CIA) lists the world’s religious populations for the last year available, 2012 — the break down follows: Christian 31.59 percent (of which Roman Catholic 18.85 percent, Protestant 8.15 percent, Orthodox 4.96 percent, Anglican 1.26 percent), Muslim 23.2 percent, Hindu 15.0 percent, Buddhist 7.1 percent, Sikh 0.35 percent, Jewish 0.2 percent, Bahá’í 0.11 percent, other religions 10.95 percent, non-religious 9.66 percent, atheists 2.01 percent. (2010 est.).
In a presentation given in 2001 at Santa Clara University, a Jesuit university in California, Dr. David L. Perry presented some compelling arguments in an address titled, “Killing in the name of God: The problem of Holy War.”

In it, Dr. Perry noted, despite the fundamental differences between Christians, Muslims and Jews, “they share a fundamental belief in God as compassionate and just.”



But, while many justifications for wars and killings spring from all manner of darkness in the human condition — racial and societal prejudices and the like — killing in the name of one interpretation or another of religious dogma still dogs humanity through the ages.

Perry notes: “religious violence can take on a particularly intense and ruthless character, if the objects of that violence are seen as blaspheming or insulting God, as the enemies of God or God’s way narrowly conceived. The problem of indiscriminate holy war is particularly difficult for Judaism, Christianity, and Islam to eliminate from within because it’s so deeply rooted in their scriptures and traditions. The same religious traditions that affirm God to be compassionate, merciful, and just, also include more disturbing claims that promote religious hatred and intolerance, and sadly have provided a rationale for aggressive holy war. We need to face these things head-on. Questioning the moral justification of holy war leads, moreover, to troubling questions about the legitimacy of some basic theological claims and the authority of foundational religious scripture.”

There is no shortage of debate on whether religion, in any form, is right or wrong for the planet as a whole.

If you want to watch a compelling showdown between an avowed atheist on the harm religion has done to the world and a fervent Catholic arguing Christian values could be and should be the salvation of the world, check out the 2010 documentary “Hitchen vs. Blair – Be it resolved Religion is a force for good in the world.”



From the website topdocumentaryfilms.com there’s this description
of the epic encounter:

On one side you had novelist and author (the late) Christopher Hitchens, a loudly, proudly self-avowed cancer-stricken writer whose brush with death has done nothing to disavow his long-held convictions that God is Not Great, as he titled his recent book.
 On the other was former British PM Tony Blair, a recent Roman Catholic convert who became the latest straw man to go up against the erudite Hitchens in a debate over the existence of a divine being. The pair squared off on Friday at Roy Thomson Hall in Toronto for a philosophical debate on the moral merits of religion.
The surprises? Mr. Hitchens, who live(d) in Washington, D.C. has had a Christmas tree as long as he’s been a father and observes Passover. He discovered his family’s Jewish roots late in life; his wife, Carol Blue, is also Jewish.
 And Mr. Blair’s father, Leo, a retired law professor, is a militant atheist. The long-time politician also revealed in his recently released memoir, A Journey: My Political Life, that he has always been more interested in religion than politics.
For Mr. Blair, who converted to Catholicism after leaving office in 2007, religion plays the most central of roles, both personally and in his worldview.


According to The Guardian, Hitchens won the crowd over with his impassioned, yet clinically scathing argument that religion is a harm.

As The Guardian reported, “Both men were unabashedly stalwart in their positions. Hitchens, one of the leading “new atheists” and author of the hit book God Is Not Great, slammed religion as nothing more than supernatural gobbledegook that caused untold misery throughout human history. “Once you assume a creator and a plan it make us subjects in a cruel experiment,” Hitchens said before causing widespread laughter by comparing God to “a kind of divine North Korea.”


Blair, perhaps not surprisingly, was a little less forthright. On the backfoot for much of the debate he kept returning to his theme that many religious people all over the world were engaged in great and good works. They did that because of their faith, he argued, and to slam all religious people as ignorant or evil was plain wrong. “The proposition that religion is unadulterated poison is unsustainable,” he said. Blair called religion at its best “a benign progressive framework by which to live our lives.


We see the increase of secularism clearly exhibited in many places that were once stalwart Christian societies, including Mexico, which was once nearly 100 per cent Catholic Christian in the time following the arrival of the Spanish. The Canadian province of Quebec, which, too, was more than two-thirds French Canadian Catholic, now sees churches shuttered and the majority of its population rarely, if ever, setting foot in one of Quebec’s hundreds of magnificent stone churches.



While more than 80 percent of the province’s population lists their religious affiliation as Catholic, according to a 2008 Léger Marketing poll, the proportion of Quebec’s nearly six million Catholics who attend mass weekly now stands at six per cent, the lowest of any Western society.

Sure, one can find higher percentages of adherents to Catholicism in places like Italy and Vatican City, but erosion of religious faith is happening at almost breakneck speed in most countries in the Western world.
 Is the world any worse off because of it, though?

According to a 2009 posting on the Internet news and opinion site, AlterNet, 
societies that have proven themselves most prosperous are those where religion and religious pedagogy is least.
The piece points out that “a growing body of research in what one sociologist describes as the ‘emerging field of secularity’ is challenging long-held assumptions about the relationship of religion and effective governance. In a paper posted recently on the online journal Evolutionary Psychology, independent researcher Gregory S. Paul reports a strong correlation within First World democracies between socioeconomic well-being and secularity. In short, prosperity is highest in societies where religion is practiced least.
“Using existing data, Paul combined 25 indicators of societal and economic stability — things like crime, suicide, drug use, incarceration, unemployment, income, abortion and public corruption — to score each country using what he calls the ‘successful societies scale.’ He also scored countries on their degree of religiosity, as determined by such measures as church attendance, belief in a creator deity and acceptance of Bible literalism. 
“Comparing the two scores, he found, with little exception, that the least religious countries enjoyed the most prosperity. Of particular note, the U.S. holds the distinction of most religious and least prosperous among the 17 countries included in the study, ranking last in 14 of the 25 socioeconomic measures.
Certainly, venturing into a Middle Eastern country where Islam isn’t just the dominant religion, but is the basis for government, it would be unwise and even decidedly dangerous to begin espousing secularism.



But, is there a correlation between many of these countries and their strict adherence to religious dogma and the poor state of their economies, outside the inherent wealth provided some of them for having oil riches?

There are compelling arguments and statistical data that show such countries that demand blind and overarching faith to the faith are indeed, by most standards, the most backward of those on the planet for a free-thinking person to encounter.

We see religious fundamentalism creeping increasingly into politics in the United States in many forms of hard right organizations, most recently exemplified by those who call themselves The Tea Party. Witness the Bible Belt politics and the Christian fundamentalism that drives the “truther” movements in pockets of the country, as well, suggesting President Barack Obama is a sneaky back-door Muslim who wasn’t really born in Hawaii.
You get the picture.

But, overall, the United States has moved into a largely secular society, in governance and in most outward expressions of the nation around the world.
Clearly, some, most vociferously from the pulpit, would argue that is a grave danger to the moral fiber of the nation.

But, while vocal arguments reach often shrill proportions in arguing the nation was founded on “Christian principles,” it doesn’t mean the nation needs to be steered into legislating for Christian beliefs, or into wars for Christian teachings.

As much of the world has shown, tolerance for religious beliefs identifies an advanced nation or society and intolerance and shaming for those beliefs can brand a country or region as dangerous, backward and a pariah among nation states.

No, a country or society doesn’t need to shape itself after religious dogma, but there certainly, and most comforting to many, is a place for ‘old time religion’ wherever we choose to find it or follow it.

 

Wednesday, March 26, 2014

Comfort Food For Caregivers

Tinky Weisblat Harvest Salad

Comfort food for Caregivers by Chef Tinky
In addition to other jobs, caregivers are often called upon to put food on the table for their companions and themselves. While caring for my late mother, I tried to involve her in food preparation as much as possible. She had always cooked and wanted to help—although Alzheimer’s disease limited the tasks she could accomplish.

Here is a simple meal for caregivers and their charges. It epitomizes comfort food without being overly heavy. It also uses ingredients most of us have in the house, and it doesn’t take a lot of prep work. The “sort of soufflé” doesn’t puff up like a true soufflé, but it doesn’t deflate like one either. It’s easy to make and digest.

Sort-of Soufflé (adapted from Fannie Farmer)

Tinky Weisblat Sort of Souffle

Ingredients:
1 cup scalded milk
1/4 cup soft bread crumbs (I usually just crumble up bread I have on hand)
1 cup small pieces of Cheddar cheese
1 tablespoon butter
1 teaspoon Creole seasoning or 1/2 teaspoon salt
3 egg yolks, beaten until thick
3 egg whites, beaten until stiff

Instructions:
Preheat the oven to 350 degrees. Butter a 1-1/2-quart casserole dish.
In a saucepan, combine the milk, breadcrumbs, cheese, butter, and seasoning.
Cook, stirring over low heat until the cheese and butter have melted and the mixture is relatively smooth. Remove from the heat.

Stir in the egg yolks; then gently fold in the stiff egg whites. Don’t worry if some egg white remains visible.

Pour the mixture into the buttered casserole dish. Bake until much of the top turns a warm brown; this should take between 20 and 30 minutes.
Serves 2 to 4, depending on appetite.

Caregiver’s mantra by Chef Tinky:
  1. Relax.
  2. Avoid stressful tasks.
  3. And enjoy sharing.

The salad is flexible. If you don’t have apples in the house, throw in a few slices of orange. If you don’t have dried cranberries, use raisins. If you don’t have spinach, use lettuce.
And if you don’t feel like toasting your nuts, just use them raw!

The dressing recipe makes enough for another day. Just be sure to refrigerate the leftover dressing—and to bring it to room temperature and shake it well before you use it again.

Harvest Salad

Ingredients for the dressing:
3 tablespoons cider vinegar
1 tablespoon orange juice
3 tablespoons honey
2 tablespoons mayonnaise
1 teaspoon Dijon mustard
1/2 teaspoon salt
ground pepper to taste (I like to grind the pepper mill about 6 times)
3/4 cup extra-virgin olive oil

Ingredients for the salad:
1/2 pound uncooked spinach leaves
1/2 cup walnut or pecan halves (more if you like)
1 apple (your choice, cored and sliced but not peeled)
1/2 small red onion, chopped into rings or pieces
1/2 cup crumbled feta or blue cheese (more if you like)
3 strips cooked bacon, crumbled (optional)
1/4 cup dried cranberries (more if you like)

Instructions:
First, make the dressing. In a small saucepan over low heat, stir together the vinegar, the juice, and the honey until the honey dissolves. Remove the pan from the heat, and let the mixture cool for a few minutes; then use a whisk to stir in the mayonnaise, mustard, salt, and pepper. It will take a while for the ingredients to smooth out.
Finally, slowly whisk in the oil. Careful to pour the dressing into a jar with a tight-fitting lid that will hold at least 1-1/2 cups of liquid.
Wash the spinach thoroughly.
Place the nuts in a small frying pan, and toast them over low heat for a few minutes, stirring constantly, to release their oils. Take the pan off the heat.
Just before you are ready to eat, slice the apple. In a salad bowl, combine the spinach, onion slices, toasted nuts, apple slices, cheese, bacon (if using), and cranberries.
Shake the dressing, and pour a third to a half of it onto the salad. Toss the salad well but carefully.
Serves 6 to 8.

Pulling Taffy by Tinky Weisblat

Tinky Weisblat

Tinky Weisblat is a writer and singer who spent several years as caregiver for her mother and wrote about the experience in Pulling Taffy. She loves to cook and to laugh, and she enjoys exploring the connections that link food, story, and song. To learn more about Tinky visit her website at TinkyCooks.com.


Dementia Signage

for the Home

___________________

Red Dry Erase Board dry erase boardsWeekly To Do List Notepad notepadsAppointment Reminder Notepad notepads

Patient Excuse Form Notepad (Blue) notepadsMonogram Address Labels (White/Black)/ stickers

Deathly Afraid to Decide: Dying on Whose Terms?

Image courtesy of (Vichaya Kiatying-Angsulee) / FreeDigitalPhotos.net
 



“Watching a peaceful death of a human being reminds us of a falling star; one of a million lights in a vast sky that flares up for a brief moment only to disappear into the endless night forever.”
Dr. Elisabeth Kubler-Ross
Don’t tell a Star Trek fan, but the “final frontier” isn’t really space, it’s closer to home.
It’s death.

It’s a frontier we shun and avoid at all costs, naturally, but one which is inevitable for each and every living thing on this planet.

How we go to that place, however, is complicated, to say the least.

The above quote comes from one of the most insightful experts in the field of death and dying. Not that it’s a crowded field of expertise, it being, after all, seen by most of us as morbid, depressing and the realm of undertakers and the funeral industry.

Since she became well-known in the 1970s, Kubler-Ross was one of the most inspirational experts on the topic of death and dying. The Swiss-born American psychiatrist was a pioneer in near-death studies and the author of the groundbreaking 1969 book On Death and Dying, where she first discussed her theory of the five stages of grief.

They are, in Kubler-Ross’ estimation: denial, anger, bargaining, depression, acceptance.
She was most notably, throughout her career an author of several books on the subject, primarily focused on counselling for those in the grips of personal trauma, grief and grieving associated with death and dying. As well, Kubler-Ross is credited with having dramatically affected the understanding and practices involved in hospice and end-of-life care.

In an interview with the San Francisco Chronicle in 1997, when she thought she was dying of a series of strokes (she actually lived until 2004), Kubler-Ross spoke of the appalling conditions she encountered when she arrived in the United States from Europe, where end-of-life care was decades ahead of that practiced in North America.

Image courtesy of (Keerati) / FreeDigitalPhotos.nett

“When I came to this country in 1958, to be a dying patient in a medical hospital was a nightmare,” Kubler-Ross said. “You were put in the last room, furthest away from the nurses’ station. You were full of pain, but they wouldn’t give you morphine. Nobody told you that you were full of cancer and that it was understandable that you had pain and needed medication. But the doctors were afraid of making their patients drug addicts. It was so stupid.”

With pioneers such as Kubler-Ross making important inroads into the dignified treatment of end-of-life care, the conversation still is troubling for many to broach the subject of assisted dying — assisted suicide, if you will, although to those who espouse more dialogue and legislation permitting patients to determine their own fate, the term is overly harsh.

While her career veered into the controversial as she began espousing theories on the afterlife, Kubler-Ross was not a fan of assisted dying.

In the 1997 interview, she told the Chronicle she had nothing but disdain for Dr. Jack Kevorkian — the Michigan “Dr. Death” who was jailed for several cases of assisted suicide. Kubler-Ross thought Kevorkian’s methods were crude and his grandstanding was crass. But, even Kubler-Ross came to see suicide as a legitimate option.

“If it were not for Kevorkian, I would have done it a long time ago. I can’t stand this Kevorkian,” she said in her interview.

“When I’ve had enough of this, I’ll do it myself. I don’t give a hoot about the afterlife, reincarnation or anything. I’m finished, and I’m not coming back.”

Kevorkian, of course, did much to both advance the discussion of assisted suicide and “dying with dignity,” as some call it, and to embolden opponents in his own profession, the clergy and legislatures.

In his crusade on behalf of patients to determine how they manage their own end-of-life decisions, Kevorkian challenged social taboos about disease and dying while defying prosecutors and the courts. He spent eight years in prison after being convicted of second-degree murder in the death of about 130 ailing patients whose lives he had helped end, beginning in 1990.

Originally sentenced in 1999 to 10 to 25 years in a maximum security prison, he was released after assuring the authorities that he would never conduct another assisted suicide.

There currently are four states where physician-assisted suicide is legal.

There are some interesting looks at the extent of criminality involved in taking one’s life in most other states.

Over time, there have been legal victories for proponents of dying on one’s own terms.

In 2006, the United States Supreme Court upheld a lower court ruling that found that Oregon’s Death With Dignity Act protected assisted suicide as a legitimate medical practice.

Compassion and Choices is a non-profit organization based in Denver that bills itself as “committed to helping everyone have the best death possible. We offer free consultation, planning resources, referrals and guidance, and across the nation we work to protect and expand options at the end of life.”

It does not especially like the term “assisted suicide, preferring “aid in dying” as a more proper description of the movement.

The organization is an amalgamation of other like-minded groups that advocate on behalf of those among us who believe we should have the right to call the terms of our death when faced with terminal illnesses.

The Hemlock Society had been a pioneer in such advocacy and in 2003 changed its name to End-of-Life Choices, eventually joining with Compassion and Choices for the organization that exists and advocates today for patients, physicians, nurses and health providers who address issues of end-of-life care and who take part in assisted dying cases.

The group is daily on the forefront of legislation and civil proceedings where assisted dying is either a criminal issue or one in the civil courts.

Most anyone who has experienced a loved one dying of a terminal disease, such as advanced stages of cancer, can attest to the fact that medical professionals quietly and with utmost respect for their patients, often prescribe administration of pain medications to the point where death comes quietly and peacefully for the patient.

But, palliative care organizations fiercely oppose the notion that the administration of drugs like morphine routinely hasten a patient’s death.

Image courtesy of (Ambro) / FreeDigitalPhotos.net
 
In a detailed analysis of several studies on the issue, the International Association for Hospice and Palliative Care states, emphatically, that “no studies have shown that patients’ lives have been shortened through the administration of appropriate pain medication.”

Note the crucial term there — “appropriate pain medication…”

Health-care professionals will fiercely deny they do so, but most docs and veteran nurses will attest to a ‘gentle nudge’ at the end stages of a patient’s life, such as the administration of drugs like morphine in sufficient dosages to let the patient slip away peacefully.

Administered in an “as needed,” or “PRN” prescription by a doctor, morphine can, for instance, easily hasten death in patients with such conditions as COPD, where breathing is compromised. Family members or loved ones of such patients can always ask that such medications not be administered in a PRN fashion, or at the discretion of the attending nurses, but in many cases, when the patient is truly terminal and the COPD is exasperating any hope of recovery, family members go into that scenario reasonably eyes-open.

Why, then, in a country where there are more rights to end a life at the end of a gun when someone is breaking into your house to steal your television set, are there just as many laws outlawing a right to end life on one’s own terms? There is a stirring pro versus con discussion on the issue listed on ProCon’s website.

As we’ve seen, however, as more cases come before the courts and more families advocate for the choices of patients and their families in determining end-of-life decisions, the tide is slowly, almost excruciatingly so for many facing a near-death encounter, turning in favor of those who wish to go out on their own terms.

The practice is now a shrug-worthy accepted one in many European countries — places where a troubling number of North Americans must venture to meet death on their own terms.
It doesn’t for one minute undermine the moral fiber of the country, state or jurisdiction that allows assisted dying.

Most who have experienced it with our loved ones believe it to be an issue which is long overdue for a civilized and dignified decision to be made by all concerned — beginning with the patient.

For Your Practice