The Mission of the National Respite Coalition is to secure quality, accessible, planned and crisis respite services for all families and caregivers in need of such services in order to strengthen and stabilize families, and enhance child and adult safety.

The Coalition works to achieve these goals by preserving and promoting respite in policy and programs at the national, state, and local levels. For more information on NRC's activities, or copies of major pending legislation, write the National Respite Coalition at 4016 Oxford St., Annandale, VA, 22003, call Jill Kagan at (703) 256-9578, or e-mail her at jbkagan@aol.com.

When you join the National Respite Network you are automatically a member of the National Respite Coalition, the Policy Division of the ARCH National Respite Network, and can receive the latest updates on Congressional legislative activity important to respite and the families you serve, as well as information from the states about program implementation. The National Respite Network is a program of the Chapel Hill Training-Outreach Project:

Our Mission is to develop and demonstrate programs and strategies that will enhance the lives of children and families. Of principal concern to project staff are families in poverty, families caring for the elderly, children with disabilities or chronic illness, and children at risk of abuse and neglect.

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RESPITE ISSUES AND ANSWERS:

National Respite Coalition Legislative and Funding Update July 22, 2004

Lifespan Respite: Pass the Bill before Congress Adjourns in October!!
FY 05 Appropriations
Michigan Passes Lifespan Respite Legislation!!
National Governor's Association Issue Brief Identifies Lifespan Respite
---------------------------
"Ronald Reagan Alzheimer's Breakthrough Act of 2004"
Family Opportunity Act Passes Senate
IDEA Passes Senate
National Family Caregiver Town Hall Meeting

Association of University Centers on Disabilities
TASK FORCE

Lifespan Respite Legislation

Congressional Recess will be here next week (July 26-Sept. 5) providing one of the last opportunities to make your voice heard in support of the Lifespan Respite Care Act (HR 1083, S. 538) through personal visits with members back home in the district. Congress will then adjourn in October for the November elections. If the Lifespan Respite bill is not enacted in September before the end of the 108th Congress, the process will have to begin again in the next Congress which convenes January 2005.

There are two strategies now for enacting the Lifespan Respite bill. I urge you to take action on one or both of these measures immediately.

1) Passage of the freestanding Lifespan Respite Care Act (HR 1083, S. 538). As you know the Senate bill has already passed and we are very close to final passage in the House. We must overcome some minor Administration objections AND seek more cosponsors in the House.

2) As a second and simultaneous strategy, members of Congress should be urged to cosponsor and pass the "Ronald Reagan Alzheimer's Breakthrough Act," (S. 2533, HR 4595) and ask the White House to support this measure. The Senate-Lifespan Respite Care Act has been included in both the House and Senate versions of this bill.

ACTION:

To contact the White House and urge the President to support the Lifespan Respite Care Act, email Troy Justesen, Associate Director for the White House Domestic Policy Council at TJustesen@opd.eop.gov or call the White House at 202-456-1414 and urge support for the Lifespan Respite Care Act and the Reagan bill today.

Direct Support Professional Wage Bill (H.R. 5197)

Family Opportunity Act

Medicaid and CHIP Safety Net Preservation Act

Child Abuse Prevention and Treatment Act Funding

State Fiscal Relief

TANF Reauthorization

Family Opportunity Act and Money Follows the Person

Medicaid Reform Information Page

Resources

LINKS to other other organizations and resources dedicated to individuals with developmental and other disabilities.

Legislative Affairs

FY 05 Labor-HHS-Education Appropriations

On July 14, the House Appropriations Committee approved a spending bill for Labor, Health and Human Services, and Education for FY 05. While level funding was recommended for most programs, the House Committee proposed increased funding for Child Abuse Prevention and Treatment Act (CAPTA) programs for the first time in ten years. If the House passes the bill and the Senate concurs, CAPTA basic state grants would be funded at $28.484 million in FY 05 and Community-based prevention grants (previously known as CBFRS), which are funded at $33.205 million in the current fiscal year, would receive $43.205 million in 2005. These new Community-Based Prevention grants will continue to support, at state discretion, respite for children with disabilities and crisis nurseries.

Other Children's Bureau programs that, like CAPTA, rated percentage increases in double digits included the Compassion Capital Fund (+15%), Abstinence Education (+50%), Independent Living Training Vouchers (+12%), and Adoption Incentives (+331%). Unfortunately, the House bill put no new money into the Title XX Social Services Block Grant at $1.7 billion; and funds for Promoting Safe and Stable Families (which also supports minimal funding for respite and crisis nurseries) would increase only slightly by $5.6 million to $410 million.

A $4.3 million increase in the National Family Caregiver Support Program was recommended, bringing the newly proposed level to $163.3 for FY 05 (including Native American Caregivers Support programs).

Final action is not likely until Sept/Oct. There is no scheduled House floor vote on the HHS money bill and no dates have been set for action in the Senate.

ACTION: Urge your Congressman and Senators to support these House Committee approved increases in critical CAPTA and National Family Caregiver Support Programs.

Michigan Passes Lifespan Respite Legislation
Michigan joins our model Lifespan respite states in enacting Lifespan Respite legislation!!! Congratulations Michigan Respite Advocates!!!

HB 4476 Lifespan Respite Care Act: Creates the Michigan lifespan respite services resource network within the Department of Community Health with the intent of developing and encouraging the statewide coordination of respite care services. The resource network would develop and distribute information on respite services, coordinate the provision of respite services, promote a statewide network of community respite services, and establish a website and toll free phone number for information on respite services. Passed House February 2004. Passed Senate June 2004. Governor signed into effect July 1, 2004

For a copy of the public law and fiscal and legislative analyses visit: http://www.michiganlegislature.org/mileg.asp?page=getObject&objName=2003-HB-4476

National Governor's Association Issue Brief Identifies Lifespan Respite
An issue brief "State Support for Family Caregivers and Paid Home-Care Workers" was recently released by the National Governor's Association Center for Best Practices Aging Initiative and identifies Lifespan Respite as a strategy for supporting family caregivers. The report can be downloaded at http://www.subnet.nga.org/ci/assets/4-Caregivers.pdf

Previously Posted:

"Ronald Reagan Alzheimer's Breakthrough Act of 2004" (S. 2533; HR 4595) Click here to see the pdf file (S.2533 text)
On June 16, 2004, the "Ronald Reagan Alzheimer's Breakthrough Act of 2004" was introduced in both the House and Senate. The Senate lead cosponsors are Senator Barbara Mikulski (D-MD) and Sen. Kit Bond (R-MO) whose intentions are to create a "living memorial" to President Reagan who suffered from Alzheimer's disease. They are joined by 30 bipartisan Senate cosponsors, including our Lifespan Respite champions, Sen. Warner and Sen. Clinton. The House lead cosponsors are Rep. Edward Markey (D-MA) and Rep. Chris Smith (R-NJ). For more information, please visit the Lifespan Respite TF web page.

Family Opportunity Act Passes Senate (partially adapted from AUCD's Legislative News in Brief)
On May 6, the Senate passed the Family Opportunity Act (S. 622) by unanimous consent. The bill allows families who have a child with disabilities to buy into Medicaid if their income does not exceed 250 percent of poverty (about $47,000 for a family of four). The legislation is expected to cost $6.6 billion over the next 10 years.

The House is scheduled to vote on the Family Opportunity Act (H.R. 1811) this afternoon under suspension of the rules, after a delay on the vote. At the urging of the Administration, Energy and Commerce Committee Chairman Barton may also include the Money Follows the Person demonstrations proposal from the New Freedom Initiatives Medicaid Demonstrations Act as an amendment.

Unfortunately, the House version includes offsets to pay for the legislation that are unacceptable to the disability community and other low income advocates. The proposed offset would decrease the Medicaid match rates for Targeted Case Management (TCM), which some states use to pay for services such as community-based services for adults with mental retardation, mental illnesses, pregnant women, people with HIV-AIDS, and other disabilities. The Senate bill does not have Medicaid offsets. The 2004 budget resolution contained a reserve fund for this purpose.

IDEA Passes Senate
The Senate approved its IDEA bill (Individuals with Disabilities Education Act), S. 1248 (substituted as HR1350) with 95 Senators voting yes and 3 opposed. Several amendments were approved including one offered by Senator Murray to make it easier for schools to provide disabled homeless and foster children with services and will smooth the transition for all disabled children, including children with parents in the military, who move to new schools.

A second amendment offered by Senator Gregg authorizes appropriations that will increase discretionary federal funding with the goal of paying for 40% of the costs of providing services under IDEA by 2011. However, Senators Harkin and Hagel submitted an amendment that would have provided for mandatory funding increases of $2.2 billion each year over the next six years in order to reach Congress' 1976 promise to reimburse states for 40% of the costs associated with IDEA. That vote failed by four votes (56 yea, 41 nay; two democratic senators were absent).

The measure also requires states under Part C Early Intervention (which can fund respite for children 0-3) to provide policies and procedures that would require the referral for evaluation for early intervention services of a child under the age of 3 who is either involved in a substantiated case of child abuse or neglect, or is identified as affected by illegal substance abuse, or withdrawal symptoms resulting from prenatal drug exposure. The provisions in the IDEA legislation track similar provisions passed in last year's reauthorization of the Child Abuse Prevention and Treatment Act (CAPTA) regarding referral of children for Part C services.

The House passed its IDEA bill last year. Differences between the two bills must still be reconciled by a conference committee.

National Family Caregiver Town Hall Meeting
The kickoff event which helped add on new cosponsors to the Lifespan Respite Care Act was the National Town Hall Meeting on Family Caregiving hosted by the National Family Caregivers Association in collaboration with the National Respite Coalition, Americans for Better Care of the Dying, Family Caregiver Alliance/National Center on Caregiving, National Alliance for Caregiving, and the National Multiple Sclerosis Society.

The National Family Caregivers Association (NFCA) supports, empowers, educates, and speaks up for the more than 50 million Americans who care for a chronically ill, aged, or disabled loved one. NFCA reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers.

We are committed to improving the overall quality of life of caregiving families and minimizing the disparities between family caregivers and non-caregivers.

Our Vision

We envision an America in which patients and their families are at the center of all healthcare planning.
We envision an America in which care for those with chronic conditions is holistic and integrated across medical and social settings, regardless of age or economic status.
We envision an America in which family caregivers lead full and productive lives, as free as possible from depression, pain, isolation, and loneliness.
We envision an America in which the contributions of family caregivers to the welfare of their loved ones and to society is recognized and supported by all societal sectors: government, employers, faith, healthcare, philanthropy, family and friends.
In short, we envision an America in which the work of family caregiving is recognized and rewarded in a manner commensurate with its importance.

A set of eight Family Caregiving Principles, drafted by this ad hoc group and now endorsed by more than forty organizations, includes a principle dedicated to promoting Lifespan respite systems. If you would like to view the principles and consider endorsement, they can be downloaded at the National Family Caregivers Association

Please circulate this update and the attached Lifespan Respite Legislative Alert widely to your membership, friends, colleagues and neighbors. If you have any questions, please don't hesitate to contact me.

Jill Kagan, MPH
National Respite Coalition
Policy Division of the ARCH National Respite Network
4016 Oxford St.
Annandale, VA 22003
703-256-9578
www.archrespite.org/nrc.htm
www.archrespite.org/tforce.htm

EMPOWERMENT and ADVOCACY

What does it mean to become empowered and be an advocate? At NFCA we define empowerment as sense of confidence in your ability to bring about positive changes in your circumstances and in your inalienable right to "life, liberty, and the pursuit of happiness. It is the feeling of "Yes I Can!" and the will to take actions. It's also the energy to power your "Yes I Can" feeling and the energy to do what it takes to get things done. Empowerment is an overused word these days, and so it becomes easy to brush it aside, but for family caregivers empowerment is critical if we are going to rise above the day-to-day challenges we face and strive for a better quality of life for ourselves and our family.

The extraordinary Helen Keller, who despite being blind and deaf, achieved so much in her life, once said:

The world is moved not only by the mighty shoves of the heroes, but also by the aggregate of the tiny pushes of each honest worker.
That is a good message for family caregivers to hear and remember, especially on those dark days when the struggles of family caregiving seem overwhelming. Each of us is an "honest worker" caring so deeply about our loved one and giving so much of ourselves to help them - and hopefully believing in our "inalienable right to life, liberty, and the pursuit of happiness?

The following articles and information pieces each deal with a different aspect of caregiver advocacy. We hope as you read them, you will gain a deeper understanding of what it means to be empowered and how you can use your own innate powers to stand up for yourself and your loved one - and possibly also make a difference for all of us.

Activism

What Does it Mean to be a Family Caregiver Advocate?

At NFCA we talk a great deal about family caregiver self-advocacy and learning to manage caregiving rather than letting it overwhelm you. The articles below discuss ideas and raise questions about how each of us can become a family caregiver advocate

Advocacy and Activism - Understanding the Difference
Anger, Acceptance, and Action
Becoming a Healthcare Advocate for Your Loved One and Yourself

NFCA National Initiatives
Tips for Caregiver Empowerment and Advocacy

NFCA is a national organization and we strive to create change on a national level. One change we are working toward is helping family caregivers actually recognize that they are family caregivers, that the care they provide today out of feelings of love, and a sense of duty goes well beyond the level of care provided for ill or aged loved ones in any previous generation.

Of course families have always taken care of their ill or disabled loved ones. Neighbors helped neighbors if they didn't have family around, and even communities helped care for the ill among them, but in the past:

Families didn't provide care for as long as we do.
Families didn't care for loved ones who are as ill, aged, or disabled as we do.
Families didn't live in an extraordinarily mobile society as we do.
Families didn't care for loved ones when so many women were employed and waited until their thirties or even early forties to have children.
Families didn't provide care at a time when healthcare costs and the question of who should pay for them were such an issue of concern.
Families didn't provide care at a time when medical science had unlocked secrets about how to save and extend lives in ways that were previously unimaginable, and
Families didn't care for loved ones at a time when the average age of the population was on the rise and aging baby boomers would soon be entering their senior years.

It is for all these reasons that caregiving is so very different today than it ever was before. It is because of all these changes that have occurred in a relatively short period of time that the word caregiver even exists. The first recorded use of it was only in 1975 according to Merriam-Webster's Collegiate Dictionary. But the term family caregiver still hasn't made it into the tenth edition of that dictionary, and it was just published in 2001. It isn't just family caregivers who need a wake-up call about their role in America's care system.

If you don't think of yourself as a family caregiver, or are uncomfortable with the term, perhaps this article will help.

Yes I am a Family Caregiver:

Who am I? How do I define myself? How do you know me? These are heady questions; ones we ask ourselves all of our lives as we try to establish our identities, and find a place for ourselves in this world.

I define myself in many ways-first with my name. I am Suzanne Mintz, Suzi to those who know me since childhood. Just by looking at me there are many things you can see that give you some idea of who and what I am. I am obviously female. I am Caucasian. I'm a brunette.

These are all part of my physical presence, the outer shell; your first impression. They don't provide a complete picture, but they begin to create an outline.

We define ourselves in others ways as well, by our professions, by our religion, by our ethnic background, by our hobbies. Each label carries with it a set of facts, images, and statistics. Some of them we choose. Others we do not.

None of us like to be stereotyped, but we don't like feeling all alone either. By identifying with a group we gain some recognition. We fit in. We belong. We also gain knowledge about ourselves. I feel comfortable when I walk into a room full of women in "their middle years" because we share things in common. Our bodies are changing and with that our identities. I can talk to these other women and be validated. Because of current research on women in their middle years, I can turn to many Web sites and learn what else to expect. Identifying as part of a group can be very beneficial.

Who am I? I am the sum of all of my labels-and then some. I am a wife, mother, daughter, Sherlock Holmes fan, fair-weather power walker. I am a Type "A" personality. I am a writer, and I like to cook. And yes! I am a family caregiver too. It is becoming a mantra for me, and I think it should for you as well.

By identifying myself as a family caregiver, part of a group, I am building recognition of what I do. I am part of a group of people - in fact a very large group - with common issues, characteristics, needs and concerns. We caregivers so often fall into our roles, just taking on tasks one after the other, as a matter of course, feeling feelings we are afraid to own. By giving a name to our situation we validate our experiences, and all of our feelings. We say to the world: Here I am! Acknowledge me! Help me!

By identifying ourselves as family caregivers, we are in a position to fight for our rights, to begin to change the way society regards us, to start feeling better about our situation because we are identifying it for what it is-a painful job that we are so often asked to do alone, regardless of physical, emotional and financial costs.

For too many years I did not have a name for what had happened to my life when my husband Steven was diagnosed with Multiple Sclerosis. For too many years I was angry and unable to be comfortable with myself.

By identifying myself as a family caregiver, and by asking you to do the same, I no longer feel alone, angry or displaced. In fact, I feel strong and empowered. Armed with statistics and stories, I hold my head high and reach out for help with dignity. I talk to the press and members of Congress. I meet with other groups whose issues converge with those of family caregivers and chart a course for change in our healthcare system. I feel okay about my pain and understand my frustration, but best of all, I now take true pride in myself, and all I have overcome in my role as a family caregiver.

By identifying ourselves as family caregivers we are saying that family caregiving is not just a personal issue for those involved, to be dealt with only within the confines of our family, but rather a national issue that must be addressed. By identifying ourselves as family caregivers, we are calling attention to the inequities in our healthcare system. By identifying ourselves as family caregivers, we are saying we matter. By identifying ourselves as family caregivers, we are alerting researchers, policy makers, insurers and others to the impact of family caregiving on us as individuals, on our families, and on society at large.

Being a family caregiver is not the end all of my identity, but it is definitely part of it. It cannot, and should not, be denied. So who am I? I am Suzanne Mintz, woman, wife, mother, daughter, author, Sherlock Holmes fan-and yes, a family caregiver.

If you'd like to learn more about the value of thinking of yourself as a family caregiver take a look at NFCA's Survey of Self-Identified Family Caregivers.

In an effort to help people better understand their role as family caregivers, to provide them with some tools for coping and becoming more capable, NFCA undertook some research on how best to communicate with family caregivers (see Surveys and Reports) and based on that research has created a public education campaign entitled It's Not All Up to You in the summer of 2004.

The campaign is designed to help family caregivers recognize that they are not alone, that caregiving is more than a one person job, and that taking care of themselves is vital to their loved ones wellbeing. The campaign has its own Web site www.familycaregiving101.org that incorporates some of the information found here but a great deal of additional material as well. Its specific purpose is to provide family caregivers with some of the tools and skills they need to take charge of their lives as family caregivers.

Advocacy and Activism

Advocating for Your Family

At NFCA we strongly believe that family caregivers need to become strong advocates for their loved ones and themselves, and that we need to be proactive and resourceful in finding the information and help that we need. Having said that, we also recognize how difficult it is for already over burdened caregivers to find the energy and where-withal to battle unresponsive healthcare and social services systems, and unfortunately, sometimes other family members as well, to meet their loved one's needs, especially if being a fighter doesn't come naturally.

But we also know that many of you will do just that. You will find an inner strength you didn't know you had and you will make an effort - indeed are making an effort everyday - to resolve yet another problem with the insurance company, put the pieces in place that will allow you to get away for a day of respite, track down the cardiologist and get him to coordinate with your loved one's primary care doctor. It's hard to be an advocate for yourself and your loved one, but if you, or someone you delegate, are not, then life will be that much more difficult because caregiving doesn't come easy, and the services and supports we need unfortunately aren't part of a seamless whole.

Being an advocate means recognizing that you and your loved ones are consumers, and as consumers of our healthcare system are owed good quality care, respect, and responsiveness. Being an advocate means recognizing that the squeaky wheel is often the only one that gets attention in a too busy system. Being an advocate means fighting for what you believe is right - whether that is an extra day in the hospital, or a timely report on a new set of tests. It's getting your boss to understand that now you need some time off, but that you have a plan in place for meeting your responsibilities to the company, and being an advocate is also about getting at least one other family member to recognize that now and then you are going to need a break and they are going to have to chip in with hands-on care.

The dictionary defines advocate as both a noun and a verb. As a verb it means "pleading on behalf of something or someone". A suggested synonym is the word, support. That being the case you may have long been an advocate without even realizing it.

Parents know that it is important "to pick your battles" so that you aren't arguing with your kids all of the time, and so that when you put your foot down they know that you mean it. Another way of expressing the same thing is to say "Don't sweat the small stuff." All of this is good advice for family caregivers who have to conserve their energy and decide what's worth making a fuss over and fighting for. But just recognizing what is important enough to expend your energy on is a big step and a positive advocacy approach.

Some of us are sufficiently angry that we find the energy not only to advocate for our loved one's well being, but also for all family caregivers. When that happens we become activists in a larger cause. Once we recognize that we are not alone in experiencing caregiving hassles, once we acknowledge that the issues of family caregiving that are lived everyday behind our own closed doors are also lived by millions of other families behind their closed doors, we wake up to the fact that family caregiving is more than a personal issue. We realize that it is a phenomenon of life in the 21st century that our country has not yet found a good way to deal with, that our country is only now waking up to as an issue that will affect every family in America before we know it. When we know in our hearts that we are not alone, and when we believe that our lives as family caregivers are made that much harder because of antiquated policies and systems, that's often when we wake up to the fact that we not only need to advocate for our loved one and ourselves, but that we must stand up for all caregiving families - and that's when we become not only advocates but also activists.

Standing Up for All Family Caregivers

What does it mean to be an activist instead of, or in addition to, being an advocate? My friend Ira Byock, a noted doctor who is a leader in the palliative care movement, described the difference between advocacy and action in an article entitled: Advocacy and Activism: Missing pieces in the Quest to Improve End-of-Life Care that he authored with some of his colleagues.

Advocacy by individuals can directly improve care for a patient. However, organized public participation, or activism, is required to alter institutional and professional policies, curricula and stands of care. The individuals who are involved in activism may be patients and their families. However, patient and family involvement is activism rather than advocacy if improving care for groups of patients, or systems of care is a goal.

Sometimes actions can have both advocacy and activism as concomitant goals.

Do you recall the outcry over insurance company rules that were sending mothers home from the hospital in less than 24 hours of giving birth? Did you know that it was the public outcry of lots of moms and dads and others who care about women's health making phone calls and writing letters that brought about the reversal in policy? Are you aware that the reason there is a national Family Medical Leave Act is because of the tireless work of activists across the country and that California has just passed a bill to actually pay for family medical leave. It is the first state in the country to do so, and it came about because individuals like you thought it sufficiently important that they picked up the phone and told their elected officials what they wanted to see happen. I can point to lots of examples of individuals working together that have made a difference. And the point in all the stories is not how much we do individually, but rather that lots of us doing something is what brings about change.

The time is right for caregiver advocacy and activism. By coming to this web site you have been an advocate. We hope you will come back to the site periodically and continue to be proactive in your approach to family caregiving. And we hope you'll also become an activist by talking to others about the issues facing your family and others, by writing or calling the leaders in your community, your state, and at the federal level. As Helen Keller noted - if we all do a little it will add up to a whole lot.

Anger, Acceptance, and Action

The following piece is excerpted from Love, Honor, & Value-A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving by NFCA's President and Co-founder Suzanne Mintz

Peter Dickinson is one of my favorite authors. He writes mysteries, but they are always more than mysteries. They are beautifully crafted stories that shed light on the human experience, stories that make you stop and reread a sentence two or three more times before you are willing to leave it there on the page and move on.

I just finished one of his latest books, Some Deaths Before Dying and there was a sentence in it that I've not been able to forget, perhaps because it was said by the lead character, a woman who was dying from a degenerative muscle disease and at the time of the story was bedridden, able to just move her eyelids and speak only haltingly. She had been a vibrant woman who in her healthier years had to some extent been a caregiver for her husband who had been a prisoner of war during World War II and came home bearing psychological scars. In referring to what had happened to her husband, and therefore to her she thought: "She too had been betrayed by happenings beyond her sphere, and now she was expected to live and behave like a normal citizen, despite that."

The sentence took my breath away - "betrayed by happenings beyond her sphere, and now she was expected to live and behave like a normal citizen, despite that." Indeed isn't that what has happened to all of us who now answer to the title of caregiver. Isn't that what has happened to the spouses, parents, children, siblings for whom we care? We've been betrayed by things we couldn't control and presented with the daunting challenge of trying to recreate normalcy.

It isn't an easy thing to do - recreate normalcy when you've been hit by what feels like the equivalent of an atomic blast, and yet that is what is expected of us, and indeed what we always strive to do. But I have come to realize that for me and my husband Steven, normalcy is very different than it is for families that don't have to deal with disability, with the almost perverse attention to the basic acts of life that come with it and the myriad arrangements we must make to do ordinary things.

And we have created a new normalcy for ourselves. It is the pattern of our day- to- day lives given Steven's current level of disability. In the early days of his illness, when he could still walk, we had a different definition of normalcy, and I know that as his MS progresses, we will have to redefine normalcy yet again. I haven't decided whether it is easier to do when the changes come gradually or when they come because of a more dynamic occurrence. Certainly gradual change is easier to assimilate into your life, but it lacks the clarity of catastrophe and doesn't always give you the opportunity to recognize the change for what it is because it sort of oozes its way slowly into your life.

But regardless of whether the changes come swiftly or slowly they play havoc with our emotions and we are forced to deal with what I have come to think of us as the bridge between anger and acceptance. Anger, an emotion we have been taught to try and hide, I have come to think of as a very healthy emotion, one that reminds us that we are very much alive and that we burn with the fire of desire for the good things of life. Expressing our anger at the difficulties we face, the indignities we must endure, at the complex arrangements to be made to do what should be simple tasks done by rote, is healthy, to rail at the Gods is okay - for a time. But anger that is continuous, that can't be soothed, that lies buried beneath a calm exterior and festers like a dirty wound, that isn't healthy. Anger must eventually give way, move beyond itself to acceptance of our situation, not placid acceptance that saps our energy, but a dynamic acceptance that translates into actions that help us make the most of our transformed lives.

Despite the difficulties we confront, life awaits us. It challenges us, more than it does the families of the able bodied and mentally fit. We all wish it would challenge us less, to be sure, but it is the hand that we have been dealt and the artistry of our life is defined by the picture we create with out "less than normal" assortment of crayons.

My life has been "betrayed by happenings beyond my sphere" and for many years I could not accept that. But at some point I crossed the bridge and consciously chose to accept my new reality, and now with open eyes I act very purposefully and strive to "live and behave like a normal citizen". I find it requires help. I can't do it alone so I call on others to help Steven and I live as normal a life as possible. Sometimes the help I need is help that I must purchase, such as when it requires modifications in our home. At other times the help comes in the form of kindly people who are willing to go out of their way to lend Steven an extra hand.

Anger, acceptance, action, they have become a triad in my life. Anger is the emotion that churns my soul and acceptance is the balm that soothes it, but action, action is what allows me to live a life that is full of hope and meaning. I hope it is the same for you and all of us who have "been betrayed by happenings beyond our sphere".

Becoming a Healthcare Advocate for Your Loved One and Yourself

NFCA offers workshops to family caregivers on becoming adept at communicating with healthcare professionals. The goal is to learn how to get the answers you need from each office visit, what to ask when medications are prescribed or tests are recommended, and much more. The more knowledgeable and confident you are as a healthcare consumer the better you will be able to advocate on behalf of your loved one and yourself. In the world of medicine it is very important for all of us to become as educated as possible about how the system works and therefore be in a position to get the best care possible.

Unfortunately there are many more family caregivers in need of such training than there are workshop leaders to give them. That's why NFCA has incorporated some of the information and lessons from the workshops on this website.

Here are Some Self-Learning Excerpts from the Communicating Effectively Curriculum.

The NFCA Story Project
Meet Some Family Caregivers

A sense of isolation, a belief that "I am the only one thinking and feeling this way" is very common among family caregivers. The reality, however, is that millions of people are family caregivers and many of them think and feel exactly the same way you do.

In fact there are more than 25 million people for whom caregiving is the equivalent of on average a half-time job or more, and there are in excess of 50 million Americans overall who are providing some level of care for a disabled, aged, or chronically ill loved one. You are definitely not alone.

The problem is many family caregivers are hesitant to speak up, to share what is going on inside for fear of being misunderstood, for fear of being admonished. But speaking up is one of the best ways to lessen the isolation of caregiving, of relieving some of the dark feelings inside. It's also a great way to help bring about the changes that are needed to make the lives of caregiving families easier.

At NFCA we think it is important that family caregivers have the opportunity to tell their own stories, to express their feelings, share their experiences, and list their needs and wishes. That's why we started The National Family Caregiver Story Project. It is a web-based initiative that all family caregivers can participate in. It's easy to do. Here's how:

Click here to share your story.

Click here to read stories from other family caregivers.

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