Best of The Web Nomination

Consumer Consortium Advancing Person-centered Living nominated for the second year in a row

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Living with Dementia

by: Richard Taylor, PhD – Author, Alzheimers from the Inside Out, Richard’s experiences and people’s reactions to his eight years living with symptoms of dementia.

In the eyes of many others, sometimes even the eyes of care-partners, I am seen as less than a complete someone. Just because my memory sometimes fails me, just because my cognitive abilities some seem to slip, just because I don’t always think like you do, nor do I remember as much or how you do –

Please, please know that in my own eyes, and I hope your eyes, I am still a whole and complete someone. I am still me. I am still Grandpa, and Dad, a friend, and whole and a complete human Being. I am in my mind still and have always been a complete person.
I am not becoming any less a person simply because I cannot remember like you, talk as you do, or think as you do. I know many of you want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be.

I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am , today!

From – Alzheimer’s from the Inside Out –
Health Professions Press, 2006
By Richard Taylor, Ph.D.

“I race up and down the corridors of my mind, frantically seeking to make sense of what’s going on around me. Sometimes this process makes me even more lost, and I become lost about why I am lost!

It is amazing to me to ponder the possibility of missing the ultimate unique moment of my life, my death, because I have no words to describe it, or understand it, or appreciate it.

Perhaps too much time is spent trying to answer and question each other, when what I really need is to feel like I am being heard. I know you don’t have all the answers. You also don’t have all the questions!

“Don’t worry if you don’t know all the answers,” says the examiner.
“Which ones is it okay for me to not know?” ask I.

How can I do this “right” in the morning and “wrong” in the afternoon? Why do I recall details no one else remembers and forget major points everyone knows?

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An “Administration for Community Living”? Yes, but…

by: G. Allen Power, MD - Eden Mentor at St. John’s Home in Rochester, NY, and Clinical Associate Professor of Medicine at the University of Rochester. He is a board certified internist and geriatrician, and is a Fellow of the American College of Physicians / American Society for Internal Medicine.

Last month, HHS Secretary Kathleen Sibelius announced the merging of the offices for Aging, Disability, and Developmental Disabilites, to form one new agency. This “Administration for Community Living” is designed, in the Secretary’s words, “to help ensure that the supports people with disabilities and seniors need to live in the community are accessible.” She goes on to say that the term “support” includes not only health care, but also appropriate housing, employment, education, meaningful relationships, and social participation.”

Much of the description is encouraging, and the efforts of organziations like the Eden Alternative to change the culture of aging, both in nursing homes and the community, seem well-aligned. One advantage of the alliance of aging with disability agencies is that it may encourage a broader view of the capabilities of people with dementia or age-related disorders to be included in meaningful ways. The comments about social participation for elders, with or without dementia, are most welcome.

At the same time, I have some misgivings. The concept has many positive features, but it’s tricky terrain to navigate in light of our history of aging in America, and things could easily go the wrong way.

First, the pairing of aging with disability may enhance our tendency to see aging as decline, and further medicalize this stage of life for all elders. Along with that “declinist” view come all the trappings of disempowerment and stigmatization that have led us to where we are today.

Second, full social participation is a great concept, but goes strongly against what our society has done for the past several decades. Is this a feel-good statement, or are we ready to pursue this in an honest manner? Are we ready to bring elders to the tables of our communities–even if they don’t have a job title or position power, even if they live with some forgetfulness–and truly listen to what they have to say?

The third issue is a larger one that I explored during my time away with my friend Emi Kiyota, which I’ll be addressing in future posts as well. That is the idea that aging has become a commodity in our society. Older people are seen primarily as consumers of services that are designed by others, for them. An entire industry has been built around this and in doing so, has marginalized elders and repositioned them as needing care and services, creating excess disability.

A prime example of this is the way in which we have sunk untold millions of dollars into senior living communities, rather than redesigning neighborhoods to be more accessible and inclusive. Are we ready to reverse this trend to create true community integration?

Lastly, Secretary Sibelius’ opening statement said (with my emphasis): “All Americans–including people with disabilities and seniors–should be able to live at home with the supports they need, participating in communities that value their contributions–rather than in nursing homes or other instituions.” Strong words. But does this mean aging in community, or aging in place?

Is there true community participation and reciprocity, where others will “value their contributions”, or is this simply housing that becomes a de facto “separate but equal” situation, due to a lack of accessibility for all? Will there be community gathering places that are truly multi-generational, or will the elders only have a “senior center” nearby for their use? Will the elders be consulted and engaged for their wisdom and experience, or will they simply be served by the other generations? One solution is affordable for society and empowering for elders–the other is neither.

(Parenthetically, I gave two talks last week at local community centers. Both had a “Senior Citizen Room”. That is not inclusion.)

This is the time to raise these issues, and this new agency will hopefully spur much more discussion of these topics. Our aging demographics demand it.

 

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The Right to Choose

by: Joe Stango, Founder, President Dora’s Hope

There is a great debate raging throughout our country today. It is the resurgence of the age old issue regarding a women’s right to choose. Oddly, it is the notion of freedom – religious freedom – that has seen this issue re-emerge and in a big way. We are a nation, beginning at our very birth and throughout our history that continually asks the question “who are you to tell mewhat to do?” Or, to put it another way such as the young artist Sara Bareilles sings in her recent hit, “who made you king of anything?”

Whether the argument is about the government, a political party or a religious institution and the roles they each play in our lives, we, as Americans, don’t like anyone telling us what to do. We are a people who want to be free to make our decisions based upon our own beliefs and our own conscience.

Regardless of whether you or I agree with this premise is not the issue. The simple truth is it exists – period, end of sentence. Oddly, it exists within both major political parties but, perhaps, in different ways. One wants to do away with “big” government while the other wants to do away with “big” business. Republicans want to “get government off the back” of its people so that they can be free to go out into the world and do what they do best via a smaller, less intrusive government. Democrats, on the other hand, want to free us from the “injustice” that major institutions, secular or religious, seemingly “force” upon us. Wall Street or Wal-Mart, they rally against “big” corporations and the monopolizing affects they have on society. What I fail to understand however, is why neither the republican nor democratic argument seems to spread beyond the healthy and the young to the disabled and the aged.

Medicaid is a government sponsored “healthcare” program. For most seniors and disabled citizens, it is a government sponsored “long term care” program. I might add that it is the primary source for long term care services for all Americans – yet no Republican discusses getting the government off the “backs” of those affected by it. No Democrat talks about a woman’s “right to choose,” or for that matter, anyone else’s right to choose where the care is delivered. Neither party discusses the government sanctioned “monopoly” that exists because of Medicaid’s mandate that Medicaid health care services be delivered in an institutional setting rather than allowing consumers to choose for themselves where they will receive their care, in an institution or at home surrounded by their loved ones.

More disturbing to me is either side’s lack of outrage that government is intruding in the lives of its people resulting in parents losing their children, wives being separated from their husbands, and good Americans being taken from the community’s and church’s that they love.

Where is the justice department’s investigation of discrimination, disable-ism, disabled profiling and bias? Where are the politicians pounding the podium declaring to Americans that the questionable practices of this government, a government “of the people, by the people and for the people,” are wrong and that they must be changed? Where are the congressional committee hearings investigating why the government has suspended liberty and incarcerated fellow Americans against their will? Where is the senate finance hearing investigating why taxpayers are footing the higher costs for these practices when, with full knowledge, the committee knows community based care is less expensive? Where is the anger over the monopolistic tactics of the institutional care industry and their lobbyists? Where are the investigative reporters seeking answers as to why government has run amok or stories on corporate greed of institutional care providers?

Finally, and I speak with humnility and in the most solemn of tones, I ask where are our religious leaders to speak on the immorality of these government tactics? Where is our Reverend King to speak about the hope being denied our fellow Americans and their dream of freedom? Where is our Reverend Bonhoeffer – a Lutheran minister who, under the threat of the Nazi party in the 1930s simply distinguished for us “cheap grace from costly grace” teaching us that grace comes from more than a declaration of faith it comes from an adherence to the word particularly when in the presence of injustice?

Where are you America?

In this country we believe that freedom should be granted to all. However, there seems to be an unspoken caveat that says ‘freedom for all….unless you are disabled because of age or disease.’ Then, and only then, you must forfeit your freedom and let the government take over your life, taking you from your family, your community and your sense of purpose, robbing you of “life, liberty and the pursuit of happiness. It seems we have yet to acknowledge that we are all, including the aged and disabled, creatures of God who embrace our freedom with the hope of making a difference in the lives of others and discovering, despite our age or disability, what God’s plan is for us.

The Reverend Dr Martin Luther King Jr. taught us that; black or white, yellow or red Jew or Gentile, Catholic or Protestant, Republican or Democrat, Asian, Italian, Cuban, Irish or any other ethnicity represented in this country, we all dream the same dream – the dream of Freedom. As Americans we have yet to realize that just because we grow old or become disabled does not mean we cherish our freedom any less – in fact, I will argue, we cherish it even more. As Reverend King once noted, “justice delayed is justice denied.” Under Medicaid we have denied freedom long enough. We have denied justice long enough. We have denied the “right to choose” to our seniors and our disabled brothers and sisters long enough.

It’s time to reunite individuals with their families, churches, communities and all whom they love; it’s time to bring hope where there is despair; it’s time to bring light where there is darkness; it is time to bring joy where there is sadness; it’s time to bring love where there is hatred and anger for a government that has forgotten its own people.

It’s time for Choice Centered Medicaid.

I pray that the good Lord will continue to bless and keep us all and that we will always be surrounded by those we love.

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Boomers at the End of Life

By Richard P. Grimes, President/CEO of the Assisted Living Federation of America, representing professionally managed senior living communities and the residents and families they serve.  http://www.alfa.org/,

There’s much speculation about what boomers will want in amenities and services 15 to 25 years from now when they move into one of our senior living communities. The boomer generation changed the world, and they will surely have extraordinary expectations about how they will live into their 80s, 90s, and 100s.

I’m sure it is true, but will these extraordinary expectations in the “I can have it all” generation also extend to expectations about how they will die? At the end of life, will they have unreasonable expectations about extending their lives by a few days or weeks and not “go gentle into that good night?”

I don’t think so. I think they’ll choose to die the way doctors die.

In a recent article synthesized in the Wall Street Journal (Feb. 25, 2012), Dr. Ken Murray argues that doctors die differently. It’s not like the rest of us, he says, but it should be. To make his case, he relates the story of his friend Charlie, a highly respected orthopedist. Charlie was diagnosed with pancreatic cancer and was offered a range of medical options, the most promising of which involved a treatment that would triple his chances of living five more years—from 5 to 15 percent. Charlie refused treatment, quit his practice, and spent his few last months with his family and friends, dying peacefully at home.

Charlie typifies what Murray knows about most doctors. They have witnessed, over the course of their careers in medical practice, the exceptional lengths to which people will go to extend their lives—and often the immense pain and suffering inflicted on them—not to mention the poor quality of life that accompanies many treatments.

Doctors have it right, Murray says. By their oath, they have to offer all the possible options to their patients, but they know the better options. By direct experience, they’ve learned the limits of medical treatment and they know the importance of planning for the end. That’s why most doctors have advance directives, whereas most of the public doesn’t.

As grown children of the Greatest Generation, boomers are involved with difficult treatment choices for their own parents today. Often with an array of medical options before them, they will encourage any means to keep Dad alive. Often, they are later conflicted and even remorseful for their role in the choices they influenced or made. Was the pain and suffering worth it for just for a few extra days or weeks of life? In many cases,probably not. With this kind of direct experience, boomers at the end of their own lives are much more likely to be in line with doctors. They’ll make better choices.

It is more likely that boomers will talk with their own adult children about how they want to spend their final days instead of waiting until needs are imminent or when they are emotionally and physically compromised. Studies show that people are happier and costs are reduced when families talk about end-of-life and advance directives. Boomers will choose, much as doctors do, to live their last days—at home, in their senior living community, in a hospice facility, or wherever they wish—with the same fortitude they had when they were changing the world.

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Older Americans Month 2012: Never Too Old to Play!

by Penny Anderson, Sec’y CCAL

May is Older Americans Month, a perfect opportunity to show our appreciation for the older adults in our community. Since 1963, communities across the nation have joined in the annual commemoration of Older Americans Month—a proud tradition that shows our nation’s commitment to celebrating the contributions and achievements of older Americans.

Never Too Old to Play!—puts a spotlight on the important role older adults play in sharing their experience, wisdom, and understanding, and passing on that knowledge to other generations in a variety of significant ways. This year’s celebrations will recognize the value that older adults continue to bring to our communities through spirited participation in social and faith groups, service organizations, and other activities.

As large numbers of baby-boomers reach retirement age, many communities have increased their efforts to provide meaningful opportunities for older adults—many of whom remain physically and socially active through their 80s and beyond. Current trends show that people over age 60 account for an ever-growing percentage of participants in community service positions, faith-based organizations, online social networking as well as arts and recreational groups.

Lifelong participation in social, creative, and physical activities has proven health benefits, including retaining mobility, muscle mass, and cognitive abilities. But older adults are not the only ones who benefit from their engagement in community life. Studies show their interactions with family, friends, and neighbors across generations enrich the lives of everyone involved. Young people who have significant relationships with a grandparent or elder report that these relationships helped shape their values, goals, and life choices and gave them a sense of identity and roots.

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