The High Cost of Alzheimer’s Disease

August 29, 2011 By toughconversations Leave a Comment

Last week’s heartbreaking news about basketball’s winning-est coach, Pat Summitt, being diagnosed with early onset dementia, Alzheimer’s type, re-focused our attention on this terrible disease and its impact on unsuspecting victims and their families. (Please don’t misunderstand: all Alzheimer’s cases are heartbreaking. Only some get more press than others. In this case it was the legendary woman’s basketball coach from the University of Tennessee). 

We have so much to learn about Alzheimer’s: Experts have yet to pinpoint its cause although researchers believe that it could result from a combination of genetic and environmental ‘risk factors.’ These could range from one’s educational level and mental health to conditions stemming from people’s dietary habits such as increased blood pressure and high cholesterol.

The Fisher Center for Alzheimer’s Research Foundation has come up with the ‘top ten’ Alzheimer’s signs and symptoms, starting with memory loss and difficulty performing familiar tasks like preparing a meal or making telephone calls to changes in mood, behavior, and personality as well as loss of initiative.

Identifying Alzheimer’s cases poses major challenges. Among the most popular measures of dementia and an effective way to track changes in one’s cognitive impairment is the ‘mini-mental,’ short for the Mini Mental State Exam (MMSE). While not conclusive the mini-mental enables practitioners to assess possible dementia patients with a 10-minute, 30-question tool.
What’s most breathtaking is Alzheimer’s human and financial toll. The Alzheimer’s Association’s 2011 Facts and Figures Report, states that 5.4 million Americans (one in eight older Americans) suffer from the debilitating illness. This number will increase as the baby boomer population ages.

Coach Summitt can expect to have an impressive support system, including her devoted 20 year old son, Pat. Many Alzheimer’s patients, however, may have only one caregiver saddled with a multitude of housekeeping, nursing, and personal care responsibilities. In 2011 almost 15 million Americans provide unpaid care for persons with Alzheimer’s or other forms of dementia. It’s estimated that in 2010 they provided 17 billion hours of unpaid care, a contribution to the nation valued at more than $202 billion. Less measurable , but as tangible is the degree of stress and depression that comes with Alzheimer’s care giving. 

If you know such a caregiver, you can provide a compassionate ear, an invitation to dinner or a night out, an offer to spell them.   If you are such a caregiver, Alzheimer’s Association can help.  See http://alzheimersassociation.org/index.asp.

Sig

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WHAT’S WRONG WITH ‘OLD’?

February 20, 2011 By toughconversations 6 Comments

The management at a dear friend’s assisted care facility just informed her that she would have to move from her ground floor apartment to one on another floor. Why? Because her floor was to become a ‘memory care community.’

“What on earth is a memory care community?” I asked. In short, a floor (or wing, or facility) dedicated to treating (or warehousing?) people suffering from dementia and Alzheimer’s disease. I suppose it’s no longer proper to refer to such places as an Alzheimer’s wing or the section for patients with dementia.

So it goes in the land of politically correct euphemisms. As Susan Jacoby points out in her new book ‘Never Say Die,’ we dare not say the word ‘old.’ Old is out. Senior is in. Erectile Dysfunction is in. Impotence is out.

At the risk of sounding tedious, try these: infant is OK. So is toddler. Pre-teen works. As do teen-ager, youthful, and twenty-somethings. But as age creeps upward, the language shifts: Don’t utter middle-aged. Proper usage calls for ‘mid-life.’

Even the marketing gurus at ‘Elder Hostel’ have re-branded their venerable organization ‘Road Scholar.’

When it comes to our ‘twilight years’ (sorry), be careful. Something in our psyche flashes yellow and says: “Warning! Watch your language.”

Think about it: Why do we feel compelled to tiptoe around words associated with aging? Sooner or later all of us are going to be old. So, what’s wrong with using the most direct word to describe that stage of life?

Let’s hear from you: Why do you think we shun words about being old when we have no compulsion to re-name other stages of life?
Sig

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A WOMAN OF FAITH CONFRONTS DEMENTIA

February 14, 2011 By toughconversations Leave a Comment

When my beloved friend Sandy* got the stunning news that she has “stage one dementia” I had no words. A hug seemed like the only possible response. All I could do was listen.   

A former religious worker, Sandy has spent her life giving it away. She taught campesinos in Latin America, sheltered the homeless in Catholic Worker houses in the U.S. and, until a month ago, interpreted for immigrants who needed help, all without payment.

Holocaust survivor Victor Frankl said we can bear almost any “how” if we can find a “why.” From the pain of childbirth to the wounds of war, people voluntarily suffer for a cause. But how do we find meaning in suffering imposed on us, something as cruel as dementia? Sandy’s answers are tentative and come from from a life of faith.  They would not be everyone’s answers.  I want to share them nonetheless.

She sees her memories and skills being stripped. “We come into this world as little children,” she says. “Maybe I’m being prepared to leave as I came.” Again, “I’ve always known how to give. Maybe I’m to learn the humility of having to receive.” On another day, “At least I can be a cheerful presence with other old people.”

These are not superficial, Pollyanna-type comments. I get a feeling Sandy is locked in a spiritual struggle with despair. She sees what’s coming with clear eyes. She says, “I always valued my autonomy, but now I realize I have to let others make my decisions.” “If there comes a time when I have no words,” she says, “ I’ll try to make my life a prayer.”

Sandy sees my tears and seeks to console me. She takes comfort in a scripture which she writes out for me: “God has not given us a spirit of fear but of power and of love and of a sound mind.” I understand how this helps her with fear and loss of control but wonder what “a sound mind” can mean to Sandy in these circumstances. Then I remember that Thomas Merton said each of us is always a beginner in the spiritual life. Maybe a sound mind is a beginner’s mind. If so I need to cultivate more of it.

Just before Sandy left with her sister, I discovered a poem by Wendell Berry, “The Real Work” (Collected Poems). The whole poem is lovely, but I focused on this line: “The mind that is not baffled is not employed./ The impeded stream is one that sings.”

We welcome your stories and comments.

Carolyn Miller Parr
[*Sandy’s name is fictional. Everything else is true.] ©Beyond Dispute Associates, 2011.

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The Moment of Change

October 22, 2010 By toughconversations Leave a Comment

Every time I talk about my work in Tough Conversations I hear a story. And most aren’t very happy.
Recently a friend told me about her parents who live in Buffalo. Her Dad has early Alzheimers; Mom has been his caregiver. My friend and her brother both live in Washington. Mom was doing fine as caregiver until the day she fell on a freezing sidewalk and broke her right wrist. Unfortunately she could not stand up using only her left arm. And she had neither a cell phone nor wore a Lifeline emergency call necklace. The streets in her neighborhood were deserted, and there was no one to whom she could shout for help.
My friend told me that her mother had to drag herself through the snow some 50 yards to the door of a neighbor who thankfully was home and could call 911.
That day life changed radically for my friend and her brother. Since her mother could no longer cook, perform housekeeping chores, or care for her husband, she and her brother would now have to fly to Buffalo on alternate weeks to care for her Mom and Dad.
In retrospect it was only a matter of time before such an event would alter the delicate balance of care and support that she, her brother, and their mother had created around the deteriorating state of her Dad. What could this family have done to save her mother the indignity and discomfort of dragging her exhausted body through the snow to her neighbor’s front door? As important, what steps could they have taken to ensure that the adult children’s lives wouldn’t have to change so drastically?
1. Provide her mother (and every caregiver for that matter) a Lifeline or other kind of emergency call system.
2. Ditto for a cell phone.
3. Compile a resources folder with a list of local caregiver agencies, doctors and their phone numbers and addresses, as well as a run-down of emergency facilities and police.
4. Develop a contingency plan for the day when Mom might not be able to fulfill her caregiver responsibilities. This includes a move to Washington or wherever the adult children live.
The list goes on. But the most fundamental question remains: When should contingency planning begin?
The answer is: NOW.

Sig Cohen, Tough Conversations, a Division of Beyond Dispute Associates.

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