Thursday, December 30, 2010

Alzheimer's Caregivers Give the Gift of Living

THURSDAY, DECEMBER 30, 2010

By Bob DeMarco 
Alzheimer's Reading Room 

So when you break it down to the lowest common denominator, what are we as Alzheimer's caregivers accomplishing? 


We are giving the gift of living to someone that needs us, and could not function without us.

Remarkable when you think about it.

For the most part, Alzheimer's caregivers never expected to be where they are today.
In his poem entitled -- Dementia -- Max Wallack wrote:


It gallops in silently on powerful hoofs
Snatching sweet, precious, forgotten memories
Turning true-blue loyal friends into treacherous strangers
Clogging synapses with emptiness
Crumbling trust into excruciating paranoia

Alzheimer's disease comes out of nowhere for most of us. It comes into our lives hard and fast.

I can still remember what it felt like during those first completely disheartening, excruciatingly difficult, first years.

I felt like one of those tops that spins on the floor or table and then falls over on its side. The top stops spinning and falls over on its side. Relief.

Relief?

Not for the Alzheimer's caregiver. Alzheimer's pulls the string and there you are spinning out of control again. Its hectic, often hard to think straight.

But we, the Alzheimer's caregivers, just keep on going.

We just keep on going.

Each day we give the gift of life. Never knowing what the next day, hour, or minute is going to bring.

So at the end of the day we give our gift. The gift of living.

For this we are to be admired and respected.

Don't worry if you are not getting your "pat on the back" each day. Don't worry if no one is there to thank you.

Each of us, each Alzheimer's caregiver, understands what you are accomplishing. We understand how you might be feeling at any moment in time. We know.

So when the going gets tough remember this -- you are the one giving the gift of life.

You know. We know.

It is not a secret to us.

Putting the We into Alzheimer's Caregiving


 WEDNESDAY, DECEMBER 29, 2010
Alzheimer’s Reading Room

By Bob DeMarco 
Alzheimer's Reading Room 

I asked, what do you mean? 
She said when you refer to Dotty and your Alzheimer's caregiving you don't say she does this, and she does that. You say, we do this and we do that. Or when Dotty does this, we do this. 

For example I said, this is how we solved this problem. Her point being that I solved the problem but I still said "we" solved the problem. Well it seems to me that when Dotty was peeing all over herself -- we had a problem. And, it seems to me that we solved this problem together. Granted, I identified the solution.

My point here. Dotty would have identified the solution on her own if she could have. She couldn't. So we did it. I guess you could say I lent her my brain. Or maybe, we shared one brain.

I know that my major operant philosophy when it comes to caring for Dotty is simple and straight forward 
We live our life the way we always had.
Sure there are constraints, and the number of constraints continue to grow.

For example, I don't think it would be a good idea to take Dotty up to the top of the
Jungfrau. But, I know we could do it if it made sense. Or, if I thought we could benefit greatly from the experience we would do it

Weird. Now I am thinking, maybe we should do it.

Yesterday in the late afternoon I was feeling in a state of angst. Why? Because I hadn't taken Dotty out into the bright light on Monday, and it was going to get dark soon. I didn't want to go two days without bright light. This explains why I was feeling a sense of urgency.

I guess you could say "we" reached the point where bright light is an important part of each day. You could go further and say, "we" now need the bright light -- both of us.

I guess I am now just realizing how very different things become when you make it to Alzheimer's World. When you make it there you put the "we" back in "You" and "I".

It seems obvious to me that Alzheimer's caregiving is a "we" experience. We have to do things together -- Dotty and me. If we didn't, I don't think Dotty would do much of anything.

When it comes to our daily life "we" do lots of things to make the day better. If "we" don't I can promise you this -- it is going to be one crappy day.

It seems to me that Dotty and I are in this together. She is still Dotty, but she is a bit different. I am still me.

I go into Alzheimer's World and I guess you could say, I am a bit different.

When you get use to the difference, and accept the difference, things seem normal instead of different. Odd, I know.

How do you put the "we" into Alzheimer's caregiving? By coming to the understanding that the person you always knew is still here -- they are just a bit different (each day).

But, they are still made of flesh and blood just like you and me.

Are you going to go out into the bright light today? Are you going to read the newspaper together? Get some exercise together? Share a banana? 

We are. We are going to do a bunch of things together today.

You?

Your thoughts and reactions? Use the Add New Comment box below.

Wednesday, December 29, 2010

Alzheimer's Caregiving and the Attitude of Gratitude

TUESDAY, DECEMBER 28, 2010

Alzheimer's Reading Room

The Attitude of Gratitude is a hard concept to grasp from the perception of an exhausted caregiver. Some days, I wanted to scream and bury my head in my pillow. No, was all I could say. No to life. No to caregiving. No to everything....


By Barbara Pursley 

It’s pretty easy to feel grateful when things are happening in a positive way and the burden is light, but when we are going through difficult times, it’s a much greater challenge to get in touch with gratitude. 

Life is not going as we think it should! 

At these times, we might be feeling overwhelmed, anxious, discouraged or resentful. Gratitude would be our last thought.

Mom had Alzheimer’s for eleven years and it’s been seven years since I was a caregiver. I’m looking in retrospect, seeing today what I couldn’t see then.

I learned that it took me three years to through all of the stages of grief. Elisabeth Kubler-Ross says that grief is a five-stage process: denial, anger, bargaining, sadness and finally, acceptance. 

Today, I can see how my pain was transformed to strength.

I learned that my obsession to journal was a crazy caregiver trying to make sense of her world. But, what I didn’t know was that the journaling entries would become a book.

I learned that I had to become a caregiver so that my experience could help others. But, what I didn’t know was that I would become a speaker.

I learned that I was the best caregiver I could be even when I doubted myself. But, what I didn’t know was that I wouldn’t have any regrets.

It’s interesting that after we go through a difficult time, in retrospect we can often see that there was something important and necessary about the experience. Sometimes our anxiety will make us want a clear perspective before it’s time. 

We don’t always know why we’ve been led down a certain path. 

We don’t always know what it is we are learning or why a door closed or opened.

Why have I been called to a caregiver? Why me?

Perspective will come in retrospect.

Now is the time to be. Allow things to happen. Go with the flow.

In hindsight, you will know why you were called to be a caregiver.

If you are going through a painful time in your life right now, reach out for support from people who understand and allow yourself to fully experience all of your feelings. Ask that the gifts in the experience be revealed to you as soon as you are ready. 

In every lesson, there is a blessing!

Tuesday, December 28, 2010

On Forgiveness

December 26, 20105:30 PM
New York Times


We are in a season traditionally devoted to good will among people and to the renewal of hope in the face of hard times.  As we seek to realize these lofty ideals, one of our greatest challenges is overcoming bitterness and divisiveness.  We all struggle with the wrongs others have done to us as well as those we have done to others, and we recoil at the vast extent of injury humankind seems determined to inflict on itself.  How to keep hope alive?  Without a constructive answer to toxic anger, addictive cycles of revenge, and immobilizing guilt, we seem doomed to despair about chances for renewal.  One answer to this despair lies in forgiveness.

What is forgiveness? When is it appropriate? Why is it considered to be commendable?  Some claim that forgiveness is merely about ridding oneself of vengeful anger; do that, and you have forgiven.  But if you were able to banish anger from your soul simply by taking a pill, would the result really be forgiveness?  The timing of forgiveness is also disputed. Some say that it should wait for the offender to take responsibility and suffer due punishment, others hold that the victim must first overcome anger altogether, and still others that forgiveness should be unilaterally bestowed at the earliest possible moment.  But what if you have every good reason to be angry and even to take your sweet revenge as well?  Is forgiveness then really to be commended? Some object that it lets the offender off the hook, confesses to one’s own weakness and vulnerability, and papers over the legitimate demands of vengeful anger.  And yet, legions praise forgiveness and think of it as an indispensable virtue.  Recall the title of Archbishop Desmond Tutu’s book on the subject: “No Future Without Forgiveness.”
 
If you claim you’ve forgiven someone then take revenge, you’re either dishonest or ignorant of the meaning of the term.

These questions about the what, when, and why of forgiveness have led to a massive outpouring of books, pamphlets, documentaries, television shows, and radio interviews.  The list grows by the hour. It includes hefty representation of religious and self-help perspectives, historical analysis (much of which was sparked by South Africa’s famed Truth and Reconciliation Commission), and increasingly, philosophical reflection as well.  Yet there is little consensus about the answers.  Indeed, the list of disputed questions is still longer. Consider: may forgiveness be demanded, or must it be a sort of freely bestowed gift?  Does the concept of “the unforgivable” make sense?  And what about the cultural context of forgiveness: does it matter? Has the concept of “forgiveness” evolved, even within religious traditions such as Christianity? Is it a fundamentally religious concept?

On almost all accounts, interpersonal forgiveness is closely tied to vengeful anger and revenge.  This linkage was brought to the fore by Bishop Joseph Butler (1692-1752) in his insightful sermons on resentment (his word for what is often now called vengeful anger) and forgiveness.  These sermons are the touchstone of modern philosophical discussions of the topic. Butler is often interpreted as saying that forgiveness requires forswearing resentment, but what he actually says is that it requires tempering resentment and forswearing revenge. He is surely right that it requires at least that much.  If you claim you’ve forgiven someone and then proceed to take revenge, then you are either dishonest or ignorant of the meaning of the term.  Forgiveness comes with conditions, such as the giving up of revenge.  What are other conditions?

If you seethe with vengeful thoughts and anger, or even simmer with them, can you be said to have forgiven fully?  I would answer in the negative.  That establishes another condition that successful forgiveness must meet.  In the contemporary literature on forgiveness, the link between forgiveness and giving up vengefulness is so heavily emphasized that it is very often offered as the reason to forgive: forgive, so that you may live without toxic anger.

However, if giving up revenge and resentment were sufficient to yield forgiveness, then one could forgive simply by forgetting, or through counseling, or by taking the latest version of the nepenthe (Nepenthe is a medicine for sorrow, literally, an anti-depressant – a "drug of forgetfulness" mentioned in ancient Greek literature and Greek mythology [Wiki] mhd) pill.  But none of those really seems to qualify as forgiveness properly speaking, however valuable they may be in their own right as a means of getting over anger.  The reason is that forgiveness is neither just a therapeutic technique nor simply self-regarding in its motivation; it is fundamentally a moral relation between self and other.

Consider its genesis in the interpersonal context: one person wrongs another.  Forgiveness is a response to that wrong, and hence to the other person as author of that action.  Forgiveness retains the bilateral or social character of the situation to which it seeks to respond.  The anger you feel in response to having been treated unjustly is warranted only if, in its intensity and its target, it is fitting.  After all, if you misidentified who did you wrong, then forgiving that person would be inappropriate, indeed, insulting.  Or if the wrongdoer is rightly identified but is not culpable, perhaps by virtue of ignorance or youth, then once again it is not forgiveness that is called for but something else — say, excuse or pardon.  (One consequence: as philosopher Jeffrie Murphy points out in his exchange with Jean Hampton in their book “Forgiveness and Mercy,” “they know not what they do” makes Christ’s plea on the cross an appeal for excuse rather than forgiveness.) 

Moreover, it is not so much the action that is forgiven, but its author.  So forgiveness assumes as its target, so to speak, an agent who knowingly does wrong and is held responsible.  The moral anger one feels in this case is a reaction that is answerable to reason; and this would hold too with respect to giving up one’s anger.  In the best case, the offender would offer you reasons for forswearing resentment, most obviously by taking a series of steps that include admission of responsibility, contrition, a resolve to mend his or her ways and recognition of what the wrong-doing felt like from your perspective.

Forgiveness is fundamentally a moral relation between self and other.

Of course, as the wronged party you don’t always get anything close to that and are often left to struggle with anger in the face of the offender’s unwillingness or inability to give you reason to forswear anger.  But if the offender offered to take the steps just mentioned, you would very likely accept, as that would make it not only psychologically easier to forgive, but would much more perfectly accomplish one moral purpose of forgiveness — namely, restoration of mutual respect and reaffirmation that one is not to be treated wrongly.  A similar logic holds on the flip side: if as the offender you take every step that could reasonably be asked of you, and your victim is unable or unwilling to forgive, you are left to struggle with your sense of being unforgiven, guilty, beholden.  Offered the chance that your victim would set aside revenge and vengefulness, forgive you, and move onto the next chapter of his or her life, you would very probably accept.

The paradigm case of interpersonal forgiveness is the one in which all of the conditions we would wish to see fulfilled are in fact met by both offender and victim.  When they are met, forgiveness will not collapse into either excuse or condonation — and on any account it is essential to avoid conflating these concepts.  One of the several sub-paradigmatic or imperfect forms of forgiveness will consist in what is often called unconditional, or more accurately, unilateral forgiveness — as when one forgives the wrongdoer independently of any steps he or she takes.  Some hold that unilateral forgiveness is the model, pointing to the much discussed case of the Amish unilaterally forgiving the murderer of their children (for an account of this case, see “Amish Grace: How Forgiveness Transcended Tragedy,” by D. B. Kraybill, S. M. Nolt, and D. L. Weaver-Zercher). I contend, by contrast, that the ideal is bilateral, one in which both sides take steps.  I also hold that whether forgiveness is or is not possible will depend on the circumstances and reasons at play; not just anything is going to count as forgiveness. 

Establishing the minimal threshold for an exchange to count as “forgiveness” is a matter of some debate, but it must include the giving up of revenge by the victim, and an assumption of responsibility by the offender.

Other familiar cases of imperfect forgiveness present their own challenges, as when one seeks to forgive a wrong done to someone else (to forgive on behalf of another, or what is commonly called third-party forgiveness, as for example when the victim is deceased). 

Another case concerns self-forgiveness.  The latter is particularly complicated, as one may seek to forgive oneself for wrongs one has done to others; or for a wrong one has done to oneself (say, degrading oneself) by wronging another; or simply for a wrong one has done only to oneself.  Self-forgiveness is notoriously apt to lapse into easy self-exculpation; here too, conditions must be set to safeguard the integrity of the notion.

Excuse, mercy, reconciliation, pardon, political apology and forgiveness of financial debt are not imperfect versions of interpersonal forgiveness; rather, they are related but distinct concepts.  Take political apology, for example.  As its name indicates, its context is political, meaning that it is transacted in a context that involves groups, corporate entities, institutions, and corresponding notions of moral responsibility and agency. 

Many of the complexities are discussed by philosopher Nick Smith in “I Was Wrong: the Meanings of Apologies.”  Apology figures into interpersonal forgiveness too.  But in the case of political apology, the transaction may in one sense be quite impersonal: picture a spokesperson apologizing for a government’s misdeeds, performed before the spokesperson was born, to a group representing the actual victims.  A lot of the moral work is done by representation (as when a spokesperson represents the state).  Further, the criteria for successful apology in such a context will overlap with but nevertheless differ from those pertinent to the interpersonal context.  For example, financial restitution as negotiated through a legal process will probably form an essential part of political apology, but not of forgiveness.

But, one may object, if the wrongdoer is unforgivable, then both interpersonal forgiveness and political apology are impossible (one can pronounce the words, but the moral deed cannot be done).  Are any wrongdoers unforgivable?  People who have committed heinous acts such as torture or child molestation are often cited as examples. 

The question is not primarily about the psychological ability of the victim to forswear anger, but whether a wrongdoer can rightly be judged not-to-be-forgiven no matter what offender and victim say or do.  I do not see that a persuasive argument for that thesis can be made; there is no such thing as the unconditionally unforgivable.  For else we would be faced with the bizarre situation of declaring illegitimate the forgiveness reached by victim and perpetrator after each has taken every step one could possibly wish for.  The implication may distress you: Osama bin Laden, for example, is not unconditionally unforgivable for his role in the attacks of 9/11.  That being said, given the extent of the injury done by grave wrongs, their author may be rightly unforgiven for an appropriate period even if he or she has taken all reasonable steps.  There is no mathematically precise formula for determining when it is appropriate to forgive.

RELATED

Read previous contributions to this series.
Why forgive?  What makes it the commendable thing to do at the appropriate time?  It’s not simply a matter of lifting the burden of toxic resentment or of immobilizing guilt, however beneficial that may be ethically and psychologically.  It is not a merely therapeutic matter, as though this were just about you.  Rather, when the requisite conditions are met, forgiveness is what a good person would seek because it expresses fundamental moral ideals.  These include ideals of spiritual growth and renewal; truth-telling; mutual respectful address; responsibility and respect; reconciliation and peace.
My sketch of the territory of forgiveness, including its underlying moral ideals, has barely mentioned religion. Many people assume that the notion of forgiveness is Christian in origin, at least in the West, and that the contemporary understanding of interpersonal forgiveness has always been the core Christian teaching on the subject.  These contestable assumptions are explored by David Konstan in “Before Forgiveness: The Origins of a Moral Idea.”  Religious origins of the notion would not invalidate a secular philosophical approach to the topic, any more than a secular origin of some idea precludes a religious appropriation of it.  While religious and secular perspectives on forgiveness are not necessarily consistent with each other, however, they agree in their attempt to address the painful fact of the pervasiveness of moral wrong in human life. They also agree on this: few of us are altogether innocent of the need for forgiveness.


Charles L. Griswold is Borden Parker Bowne Professor of Philosophy at Boston University.  His books include “Forgiveness: a Philosophical Exploration” (2007) and “Adam Smith and the Virtues of Enlightenment” (1999). He is currently co-editing a book with David Konstan on ancient Greek, Roman, Christian, and Judaic notions of forgiveness.  An exchange between Griswold and Father William Meninger about forgiveness was published by Tikkun in its March/April 2008 issue.

Sunday, December 26, 2010

A Unique Conference for People with Early-­Stage Dementia

Perspectives Newsletter
Volume 16, Number 1
FULL CIRCLE
A Unique Conference for People with Early-­Stage Dementia


 By Paulette Michaud, LCSW
Director Early–Stage Services
Alzheimer’s Association, New York City Chapter 

It was such a wonderful day! OnNovember 12th, 41 people with earlystage
dementia gathered at our NewYork City office for an all-day event that
focused on ways to live their best. For thefirst time, people withearly-stage dementiafrom as far as LongIsland, Upstate NewYork, and Connecticutwere brought to aconference without
their caregivers to
learn and to sharetheir thoughts and experiencesabout livinglife to the fullest.
The day began with a warm welcome from
Jed Levine, Executive Vice President and
Director of Programs & Services, who
noted that the New York City Chapter has
come “Full Circle” from 10 years ago when
we held our first early-stage conference
(that included caregivers).

Jed was followed
by our keynote speaker, Lisa
Snyder, Director of the Quality of Life
Programs at the University of California,
San Diego’s Shiley-Marcos Alzheimer’s
Research Center. Lisa has worked with
people with early-stage dementia and
their families for over 20 years and is the
author of the new book Living Your Best
with Early-Stage Alzheimer’s.

The audience listened intently as Lisa
talked about the three areas of well-being:

1) Cognitive or mental well-being that results
from being involved in meaningful
activities and adopting positive and adaptive
attitudes;

2) Physical well-being that
relies on good eating habits, exercise, and
adequate sleep;

3) Emotional well-being
that results from feeling a sense of purpose
and value. Lisa encouraged considerable
audience participation and she was
not disappointed!

The room came alive
as people enthusiastically
shared their
thoughts and experiences
about “living
your best.”

Erica Goldberg (from the
Chapter office) was
an invaluable scribe
for the session so
that participants had a written handout
with the session material and their
discussion contributions to take home
with them.

One participant later said,

“I loved when we were all together talking
about how we live our lives. I felt reassured
being with so many other people
like myself…it was really stimulating.”

Lou-Ellen Barkan, our President and
CEO, shared her thoughts with the participants
during a delicious lunch that was
followed by two excellent afternoon workshops.


“Let’s All Be Advocates” was led by
Lauren Tiede and Paulette Michaud.

Once again, the voices of our early-stage participants
rang loudly. They wrote a letter
to their congressmen asking for increased
dementia research funding (letter follows text).

It was wonderful to hear the participants
become impassioned advocates.

The second workshop given by Jed Levine
focused on “Medications & Alternative
Therapies.”

Jed provided information
about available medications for symptom
management and talked about alternative
approaches to healthy living that can improve
quality of life.

Everyone agreed that
there are many things each of us can do to
maintain a healthy lifestyle, in spite of
having an early-stage diagnosis.

The day ended with a wrap-up session in
which everyone heartily agreed that we
have to hold a conference just for persons
with early-stage dementia each year. As
one participant commented, “I would like
to have more of this. Everything we did
today was very valuable.” We can assure
them that their voices will be heard!

During the FULL CIRCLE plenary session
with Lisa Snyder, participants respondedto a series of questions throughout thediscussion. The following are two of thequestions and the audience responses: What attitudes help you to live yourbest? “Try to be positive towards other
besides just yourself.” “Liking the world, liking what’s around
me, reaching out, it’s easy and it can berewarding.” “Best thing I learned is to let it go. If I
can’t remember something, just let itgo and do it with ease.” “Good humor.”
 “Making your expectations of yourself
and other people reasonable.” “Forgive those that make you upset because
they have something insensitiveto say about your condition. Then theycan learn.” Central Park. I spend hours in the
park. It is complete bliss. Appreciatingbeauty and nature.” “There are so many people in this
world who have it worse off than I doand I am very fortunate.” Has anything positive come out ofAlzheimer’s? “I was very serious and studious my
whole life. But dementia changed mywhole personality. I have a new senseof humor. I tell terrible jokes. But Ihave one trip here, so I’m going to goout laughing!” “Finding a wonderful support group
with a gifted leader. I have a greatersense of community.” “After joining Paulette’s group, I find
that my brain is exercising in a way Inever would have expected.” “Aside from all the nice new people I
met in the group, I also forgot about all
the people I didn’t like!” 
Letter to Congressman


November 12, 2010

Dear Representative,

We write to you as people living with mild cognitive impairment or an early-stage
memory disorder. There are 41 of us, your constituents from 14 districts, gathered today at the Alzheimer’s Association, New York City Chapter for the 10th Annual Early-Stage Persons Forum.

We implore you to remember the words we have written below that express our deep commitment to advocating for increased funding for Alzheimer’s disease research. We ask that you keep us in the forefront of your mind come voting day.

“We want more funding!”

“We are still viable and able human beings who function and are able to vote.”

“Remember…we can vote you out!”

“If you want our support, you have to support us.”

“What if this were happening to you and your family?”

“We need more funding to provide better programs and services.”

“We need people to become more educated, and we need more classes in universities and medical schools that will teach people about Alzheimer’s disease, and how to help us.”

“The mind you save may be your own!”

“We need you to lower the age criteria for people who want to participate in clinical trials and research studies.”

“Remember – people with Alzheimer’s disease and their families represent a huge block of voters.”

“Baby boomers are aging and many are developing Alzheimer’s….you can no longer pretend this is not happening!”

“You have to do more work to get rid of the stigma that’s attached to this illness.”

“And finally……..PLEASE WAKE UP TO OUR CAUSE!!!”

While we have a lot of demands, we would like to thank you for your work and votes to pass the Compassionate Allowances Initiative. It has greatly benefited a lot of us who are living with early-onset dementia.

Thank you, Representative, for reading this letter.

We appreciate your attention to this very important matter. We trust that you’ll remember our words going forward as you vote on bills that will benefit all of us affected by this illness.

Sincerely,

(All of the conference participants signed the letter.)

Friday, December 24, 2010

With Alzheimer’s Patients Growing in Number, Congress Endorses a National Plan

By PAM BELLUCK

New York Times
Published: December 15, 2010
The bill, expected to be signed byPresident Obama, would establish a National Alzheimer’s Project within theDepartment of Health and Human Services, to coordinate the country’s approach to research, treatment and caregiving.
Its goal, the legislation says, is to “accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s” and “improve the early diagnosis of Alzheimer’s disease and coordination of the care and treatment of citizens with Alzheimer’s.”
The project would include an advisory council of representatives from agencies like the Centers for Disease Control and Prevention, theNational Institutes of Health, the Department of Veterans Affairs, theFood and Drug Administration, the Indian Health Service and the Centers for Medicare and Medicaid Services. Scientific experts, health care providers and people caring for relatives with Alzheimer’s would also be included.
“If you go to war, you have planning, planning, planning,” said Representative Christopher H. Smith, Republican of New Jersey, who co-sponsored the bill. “Well, this is a war on a dreaded disease. We need to bring all the disparate elements together for the greatest possible result.”
While the act itself does not authorize more money, one of the recommendations of the national plan “is likely to be for an increase in research money for Alzheimer’s,” said another co-sponsor of the bill, Senator Susan Collins, Republican of Maine.
“We spend one penny on research for every dollar the federal government spends on care for patients with Alzheimer’s,” she said. “That just doesn’t make sense. We really need to step up the investment.”
The legislation was driven by the rapidly rising number of people with Alzheimer’s — about 5.3 million now, and expected to triple by 2050. The cost of their care to Medicare and Medicaid was about $170 billion last year. By 2050, Ms. Collins said, it will grow to $800 billion a year, more than the military budget.
The House passed the bill on Wednesday, and the Senate last Thursday.
The advisory council would draft an annual report on federally financed programs involving research, treatment, nursing homes and home care, recommending which to expand or eliminate. It would also ensure that members of ethnic and racial groups at higher risk for Alzheimer’s be included in research and treatment.
Alzheimer’s experts said the effort could make a significant difference.
“What really makes this so powerful is that it takes us from a lot of small efforts going on locally to doing something in a coordinated way,” said Dr. Kenneth Kosik, a neuroscientist at the University of California, Santa Barbara. “If there’s one thing we know in science it is that to draw conclusions we need numbers, large-size populations to study.”
The national plan will reinforce efforts to detect brain changes that occur years before people develop symptoms of dementia, and to develop drugs to prevent or substantially delay symptoms.
Dealing with symptoms only after the fact is not going to solve the problem,” said Dr. Zaven Khachaturian, a former director of Alzheimer’s research for the National Institutes of Health. Delaying symptoms for just five years, he said, “we will cut down tremendously” on the number of people who live long enough to develop Alzheimer’s.
Representative Edward J. Markey, a Massachusetts Democrat who co-sponsored the bill, said his mother had had Alzheimer’s. “We’re trying to create a sense of urgency so that we’re developing multiple pathways that ultimately might be successful,” he said. “We’ve done it with polio, we’ve done it with AIDS.
It’s a unique disease to the extent that patients can’t lobby for themselves, and the person close to them cannot lobby because they’re home taking care of that person. There are no Alzheimer’s survivors.”

Thursday, December 23, 2010

A Spiritual Perspective on Alzheimer’s Disease and Caregiving (Part 3)

THURSDAY, DECEMBER 23, 2010

THURSDAY, DECEMBER 23, 2010

In this series of articles I have been talking about how to transcend the pain and discomfort associated with Alzheimer’s disease and caregiving from a spiritual point of view. 

By Donna McCullough 

This process always begins with accepting the reality of one’s situation in the moment.

This may include accepting a diagnosis for oneself or a loved one, as well as accepting the thoughts and feelings about the diagnosis and how it will change your life.

Although this may seem like a contradiction, the next step is to not identify with nor attach to these very same thoughts and feelings. In other words, the idea here is to touch on them and then let them go. 

In his book, “The Untethered Soul,” Michael Singer says that
The bottom line is, you’ll never be free of problems until you are free from the part within that has so many problems.” (The Untethered Soul, p. 16).

He refers to this part of us that experiences problems as the inner roommate.

The inner roommate is the voice in your head that chatters all day long. Imagine if your thoughts were spoken by a person that followed you around all day saying out loud the things that you were thinking? Wouldn’t that be horrible? 

The inner roommate is often critical and judgmental, very sensitive, jealous, insecure, fearful, flighty, harsh ... Would you like to live with someone like that? 

Unfortunately you already do. But you do not have to be affected by this voice. You can transcend or move beyond your attachment to this voice by noticing it and letting our reaction to it go. (See Part II of this article for a more detailed discussion). 

You move your awareness to the part of you that listens or watches the voice in the head. Remember that you are not the voice in the head, you are the Listener, the Watcher, the Witness, the Observer. Use whatever label helps you to connect with that neutral part of you.

You are so much more than the problems in your life, despite what the roommate says. And, there is so much more peace, love, and joy available to you despite what is going on in your life. It is just that most of us have never been taught this Truth nor how to move beyond the part of us that has so many problems.

This can be very helpful for someone who is a caregiver or someone diagnosed with Alzheimer’s disease. 

First you need to stay present in the moment and look within in order to notice the current state of affairs. Are you feeling depressed, resentful or bitter, empty, disappointed, abandoned by family and friends, exhausted, overwhelmed, hopeless and helpless? 

Are you thinking that your life is difficult, and without joy?
 

Once you have identified that you are experiencing this kind of negative energy, the next step is to decide to let it go. You do this by moving your awareness to the part of you that Observes your experience, and then taking a deep breath and letting it go. It helps to relax your chest and belly on the exhale. You remind yourself that the real you is the part of you that notices your experiences. Your experiences will change, guaranteed. But the part of you that is watching NEVER CHANGES. 

These ideas are not meant to be a quick fix as much as a practice that over time will free you from the bounds of the inner roommate. However, one immediate benefit that many people experience after they move their awareness to the Observer, is the ability to deal with problems in their lives with more clarity. 

The Observer is much more logical than the roommate and you will find that you are less emotionally reactive to situations in your life as you witness or observe them. When problems arise we usually react to the current situation as well as unfinished business from the past. But when we move our awareness to the witness we find that we can deal with what is right in front of us more effectively because we are not reacting to past situations.

There is a lot more to be said about the ideas that I have introduced to you. If you find these ideas helpful please consider picking up a copy of the book and learning more about how to apply this process in your life. Sweet blessings to you!


In this series of articles I have been talking about how to transcend the pain and discomfort associated with Alzheimer’s disease and caregiving from a spiritual point of view. 

By Donna McCullough 

This process always begins with accepting the reality of one’s situation in the moment.

This may include accepting a diagnosis for oneself or a loved one, as well as accepting the thoughts and feelings about the diagnosis and how it will change your life.

Although this may seem like a contradiction, the next step is to not identify with nor attach to these very same thoughts and feelings. In other words, the idea here is to touch on them and then let them go. 

In his book, “The Untethered Soul,” Michael Singer says that
The bottom line is, you’ll never be free of problems until you are free from the part within that has so many problems.” (The Untethered Soul, p. 16).

He refers to this part of us that experiences problems as the inner roommate.

The inner roommate is the voice in your head that chatters all day long. Imagine if your thoughts were spoken by a person that followed you around all day saying out loud the things that you were thinking? Wouldn’t that be horrible? 

The inner roommate is often critical and judgmental, very sensitive, jealous, insecure, fearful, flighty, harsh ... Would you like to live with someone like that? 

Unfortunately you already do. But you do not have to be affected by this voice. You can transcend or move beyond your attachment to this voice by noticing it and letting our reaction to it go. (See Part II of this article for a more detailed discussion). 

You move your awareness to the part of you that listens or watches the voice in the head. Remember that you are not the voice in the head, you are the Listener, the Watcher, the Witness, the Observer. Use whatever label helps you to connect with that neutral part of you.

You are so much more than the problems in your life, despite what the roommate says. And, there is so much more peace, love, and joy available to you despite what is going on in your life. It is just that most of us have never been taught this Truth nor how to move beyond the part of us that has so many problems.

This can be very helpful for someone who is a caregiver or someone diagnosed with Alzheimer’s disease. 

First you need to stay present in the moment and look within in order to notice the current state of affairs. Are you feeling depressed, resentful or bitter, empty, disappointed, abandoned by family and friends, exhausted, overwhelmed, hopeless and helpless? 

Are you thinking that your life is difficult, and without joy?
 

Once you have identified that you are experiencing this kind of negative energy, the next step is to decide to let it go. You do this by moving your awareness to the part of you that Observes your experience, and then taking a deep breath and letting it go. It helps to relax your chest and belly on the exhale. You remind yourself that the real you is the part of you that notices your experiences. Your experiences will change, guaranteed. But the part of you that is watching NEVER CHANGES. 

These ideas are not meant to be a quick fix as much as a practice that over time will free you from the bounds of the inner roommate. However, one immediate benefit that many people experience after they move their awareness to the Observer, is the ability to deal with problems in their lives with more clarity. 

The Observer is much more logical than the roommate and you will find that you are less emotionally reactive to situations in your life as you witness or observe them. When problems arise we usually react to the current situation as well as unfinished business from the past. But when we move our awareness to the witness we find that we can deal with what is right in front of us more effectively because we are not reacting to past situations.

There is a lot more to be said about the ideas that I have introduced to you. If you find these ideas helpful please consider picking up a copy of the book and learning more about how to apply this process in your life. Sweet blessings to you!