Choices ~ Healing ~ Love
Autumn is arriving here on the Northeast coast. For me, it's a time of cooler, fresh air - not too hot and not too cold. While many see it as the beginnings for a long, cold winter, the bright colored leaves illuminate my spirit.
Empowering Caregivers is celebrating its eleventh year as we continue to serve caregivers throughout the world. Our message boards and chats are active and are a great emotional support to those who participate. Our database of caregiving related articles continues to expand through the generous contributions of many in the field of caregiving.
There is lots of information on research, legislation and conferences for caregivers in this issue. There is also an important article on helping a loved one when they are approaching the end of life. So many caregivers are afraid to ask for help on this issue. When you are informed, it eases the challenge and helps you to prepare in so many ways.
May your journey be gentle and beautiful!
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Surviving Widowhood: My First Year by Sally A. Connolly -
While it has been a few months since the last passages, our thoughts and prayers are still with Angel437 and Foxmail whose fathers transitioned, Cespo's husband who passed unexpectedly, to Eleanor (TG) whose husband passed, Mare who lost her partner, and most recently to Starlight and Bridget whose mother's have passed. May each of you find loving strength in nurturing yourself during these healing times.
Many caregivers email me with this topic of great concern. It is a long article but valuable and it will assist you in preparation caring for a loved one near final end of life stages. The article was written for caregivers of patients with cancer. However, the information is applicable to most diseases and situations where death is imminent.
What To Do Before and After the Moment of Death
Understanding the Problem
The most important goal when death is near is to do what the person with advanced cancer would choose. Ideally, he or she knows what is happening and has participated in decisions about how to live and die. If not, you should strive to do what this person would want.
Most people in a hospice want a natural death. Therefore, in the last stage of the illness, physical problems are not treated with a "cure" in mind. Any chemotherapy or radiation is given to ease distressing symptoms, such as pain in a hip bone caused by a growing tumor. Treatment also can be given to prevent unfortunate results from tumor growth, such as paralysis of the lower half of the body, being unable to move one's legs, or losing bladder control. In these cases, a few doses of radiation or drugs help patients to regain comfort. Ideally, what happens during the final days and moments of life is guided by the goal of maintaining comfort and reaching a natural death.
Following the wishes of the person with cancer may mean decisions that are different from what you would choose for yourself and that are against the advice of physicians and nurses. For example, nurses might suggest getting a hospital bed, which could make bathing and drinking liquids easier for the caregiver and the family. The person with cancer may refuse, however, because he or she wants to stay in a familiar bed. In other words, practical choices may not be the patient's choices. If the family cannot provide care without the help of a hospital bed, they should talk this over with the patient. The family should be open about what it needs while remaining sensitive to what the person who is dying wants.
When a person has advanced cancer, dying often occurs slowly (over several days or a week or so), but it also can happen quickly (in a few hours). You should be prepared for either situation.
Each day, the person grows weaker and usually sleeps more, especially if his or her pain has been eased. Many families do not know when dying is taking place, and they are not always sure when death itself has happened. Over the past 100 years, more people have died in hospitals and nursing homes. Death has become less of a natural event in family life, and fewer see the process from beginning to end. People with illnesses once died at home, and families were accustomed to watching for signs that the end of life was near. Today, many families are choosing to be like their grandparents and to help someone they love through the final weeks and days of life at home.
Near the very end of life, you can expect the person's breathing to become slower - sometimes with very long pauses in between breaths. Some pauses may last longer than a minute or two. This type of breathing frequently occurs if the person is in a coma; you will know a person is in a coma because he or she cannot be awakened. In rare cases, however, the person may open his or her eyes. This may surprise you. He or she usually does not talk but is awake for a short time. In other words, some people come out of, and go back into, comas. The skin will be cool, especially around the feet and hands, and it also will be a different color at these places - usually blue, gray, or some combination of both. If the person's skin is naturally dark, such as for an African-American, it will become dusky. Finally, the patient also may become incontinent of urine or stool. Usually, however, the person has had so little to drink that this does not amount to much.
When To Get Professional Help
Some families have never cared for a very sick person at home. Nurses, social workers, or ministers who have helped other people near death can give you advice and assistance. They can explain what is happening and what can make the person with cancer more comfortable. They also can help you to decide if keeping the patient at home is really the best decision.
What You Can Do To Help
Here are six ways to help both the person being cared for and yourself during the final days of life:
1. Help with comfort and rest - Rest and sleep are important even during the final days or hours before death. Some believe that death comes very gently if the person is relaxed and rested. Help with comfort and rest in these ways:
2. Prepare for physical problems - Preparing for a close friend or family member to die means thinking about some basic questions ahead of time. This will make it easier to deal with problems when they occur. Hospice and home care staff know which problems are likely to happen and how to prepare for them.
Some doctors recommend atropine to dry up throat secretions that cause a gurgling sound or make it harder for the person to breathe. This drug can be very helpful. It dries respiratory wetness, so the person with cancer does not need to cough up secretions, which can be very distressing.
3. Prepare the funeral home ahead of time
The funeral home staff also can tell you about the costs and different kinds of services so that you can be thinking about what you want and can afford. Some families prefer to make these arrangements early so that the person with advanced cancer can help in the planning. Others make these arrangements just before death occurs.
4. Avoid calling 911 or an emergency team.Understanding what calling 911 means.
It may take time to persuade the crew that you want help controlling a symptom, such as trouble with breathing or pain, and that you do not necessarily want them to save a life. Any emergency team will want to know who the primary doctor is, and they may want to call his or her office after the situation is "under control" and the distressing symptom has been relieved. Should the person with cancer die while they are there, expect the emergency team to do what they know best: life-saving action. They also probably will move the patient from the home and to the hospital, and even admit them to an intensive care unit.
Once the person is in a hospital, whatever is in a living will may be ignored until the physicians agree that the he or she can be allowed to die a natural death. In many states, a living will that is valid at home is not valid at a hospital until a doctor puts it in the hospital chart. Sometimes, living wills that were put in the chart earlier are lost, and you will need a new one. Do not assume that a living will accepted at one hospital will automatically be accepted at others.
Some small towns, rural areas, and certain states allow communication between home health agencies and hospices and local 911 or emergency response teams to prevent this problem. If the patient and family agree, hospice staff can inform local emergency teams in advance about who has a terminal illness and what the goals should be if the family calls for "emergency" help. Unfortunately, many areas of the nation do not permit this type of practical information exchange, and they do not let 911 teams follow the wishes of a living will. Check to see what is allowed in your area by asking your hospice team.
5. Prepare a list of people to call near the time of death
Think about ideas or attitudes that could stop you from following the wishes of the person with cancer and preparing for his or her death. Here are some examples of obstacles that other caregivers have faced:
1. "Some family members feel we should do everything possible to let him live longer."
Response: Usually, when people say "we must do all we can," they are really saying "I'm not ready to see this person die." They are saving the person's life to avoid facing the death and the loss. "Heroic" measures should be pursued only if the person with cancer wants them. Doctors and nurses should be talk with the person about these decisions before a crisis occurs, and they can ask the person to fill out a living will that states his or her wishes about the end of life.
2. "If I prepare in advance, people will think that I want her to die."
Response: People will always have opinions no matter what you do. Preparing for a death, such as calling the funeral director ahead of time, will help to make the time after a person's death easier and resolve some of the unknowns. No one has the right to make judgments about how you have handled the death. Every family is different, and you know what is right for you and your loved one.
3. "I don't want my children to remember their grandmother like this."
Response: Seeing a very sick person can be upsetting for children, especially if the patient is connected to tubes or machines. As long as children are prepared for what they will see, however, the benefits of such a visit usually will outweigh the negatives. Think about what the children can learn by seeing someone who is very sick. In a sense, it prepares them for the future, because sickness is one of life's realities, as is death. Why hide this part of life from them? Letting children visit also tells them they are an important part of the family, and it teaches them that death is something people can cope with. See Helping Younger People Cope With Death And Funerals for more ideas about how to make visits with sick relatives or friends easier on them.
You need to develop plans for getting around these roadblocks. Use the COPE ideas (creativity, optimism, planning, and expert information), and see Solving Problems using this Guide for a discussion of how to use these ideas in overcoming your obstacles.
Carrying Out and Adjusting Your Plan
Carrying out your plan
The moments around the time of death are charged with emotion for many reasons, and you probably will need help from a home health or a hospice nurse and staff at this point.
Copyright© 1997 by the American College of Physicians.
A Nationwide Celebration of Family Caregivers
November is National Family Caregivers Month
National Family Caregivers Month (NFC Month) - observed every November - is a nationally recognized month that seeks to draw attention to the many challenges facing family caregivers, advocate for stronger public policy to address family caregiving issues, and raise awareness about community programs that support family caregivers. NFC Month is a time to thank, support, educate, and advocate for the more than 50 million family caregivers across the country.
During NFC Month and every day, NFCA encourages family caregivers to take four steps to empower family caregivers to act on behalf of themselves and their loved ones, and to remove barriers to health and well being:
Believe in Yourself.
For more information visit www.thefamilycaregiver.org or call 800-896-3650.
From the National Partnership for Women and Families
On Friday, August 3, 2007, the Senate unanimously approved an amendment extending Family and Medical Leave Act (FMLA) leave for up to six months for the families of wounded servicemembers. The amendment, offered by Senators Dodd and Clinton, had bipartisan support. We applaud the Senate for expanding access to the FMLA and for supporting those caring for family members recovering from combat-related injuries. The Senate's achievement signals that momentum is building for work and family issues.
The measure, titled the Support for Injured Servicemembers Act, was included as an amendment to the State Children's Health Insurance Program (SCHIP) reauthorization bill, which passed with a veto-proof majority (68-31). While President Bush has threatened to veto the SCHIP reauthorization, which provides health insurance for low-income children, Congressional leaders from both parties have vowed to fight to expand access to this successful program. The House passed its own version of the SCHIP reauthorization bill, which will be reconciled with the Senate's version. The House version does not include the Support for Injured Servicemembers Act, so we will be working over the coming weeks to ensure that this important measure gets included in the final bill.
We will monitor the next steps in the conference process and keep you apprised of any new developments. We may call on you to urge your Members of Congress to ensure that the Support for Injured Servicemembers Act is included in the final bill. Stay tuned!
The Senate's Health, Education, Labor and Pensions (HELP) Committee has approved The Alzheimer's Breakthrough Act of 2007 (S. 898). Co-sponsored by Senator Kit Bond (R-MO) and Senator Barbara Mikulski (D-MD), the Act takes a significant step in providing real relief for patients and families suffering from Alzheimer's disease.
The AARP Foundation has announced a new scholarship program for low-income women 40+ to participate in education and training opportunities. Two of the eligible categories are: Women returning to the workforce after an extended absence (such as caregiving) and grandmothers or other relatives caring for relative children who depend upon them financially. Approximately 100 scholarships ranging from $500 to $5,000 are expected to be awarded in the first round. The process opens August 31; deadline is October 31, 2007. Applications are only available on-line at: Application.
The AARP Foundation has established the Women's Scholarship Program to help women 40+ overcome financial and employment barriers by allowing them to participate in education and training opportunities they could not otherwise afford.
Eligibility: To be eligible for the scholarships, applicants must:
1. Be a female age 40 or over (as of October 31, 2007);
2. Be able to demonstrate financial need;
3. Submit a proposal for enrollment in an accredited post-secondary school or training program within 6 months of the scholarship award date.
Priority Applicants: Priority will be given to applicants in the following categories:
1. individuals returning to the workforce after an extended absence;
Scholarships may be used for any course of study at a public or private secondary school, including community colleges, technical schools, and four-year universities. Funds may be used to pay for tuition fees, and books. Scholarship funds will be made payable only to the authorized educational institution.
Scholarships will be awarded for a period of one year or less. Recipients may reapply for the following year's scholarship program if they continue to meet program eligibility requirements.
How to Apply
Lifespan Respite Care Act (P.L. 109-442)
Senate Action Expected Week of Oct. 15
The Lifespan Respite Care Act authorizes competitive grants to Aging and Disability Resource Centers in collaboration with a public or private non-profit state respite coalition or organization to make quality respite available and accessible to family caregivers regardless of age or disability. The law allows grantees to identify, coordinate and build on federal, state and local respite resources and funding streams, and would help support, expand and streamline planned and emergency respite, provider recruitment and training, and caregiver training.
ON SANDWICH GENERATION CAREGIVING!
Copies of PBS' To The Contrary with Bonnie Erbe
This is not the caregiving of past generations. With people living longer, baby boomers beginning to retire, and the majority of women in the workforce, today eldercare has become a complex and stressful situation for the one in four American families proving the care. And women - who are still the majority of caregivers - take the brunt of the pressure.The Well Spouse Association invites you to Pittsburgh, PA
"To The Contrary: Sandwich Generation Caregiver" follows Pam Trunk - mother of three with a husband battling cancer and a mother suffering from dementia - through her impossible task of caring for all the members of her family who cannot take care of themselves. Like Pam, thousands of Americans are raising children while caring for the relatives who raised them. In the piece, To the Contrary takes a look at the physical, emotional, and financial costs of caregiving. Senator Barbara Mikulski (D-MD) explains what Congress is doing to help these families. Also, Gail Hunt, executive director of the National Alliance for Caregiving explains how caregiving is affecting the workplace. She says, "The issue of family caregiving for relatives is just beginning to bubble up to the surface in the way childcare had in the past. In part, it's an equity issue. This is what I've done for my employees who have kids, now I've got to do something for my employees who have parents as a responsibility."
If you would like to receive a free DVD copy of this program, please e-mail your request to: email@example.com. Please be sure to include in the request the name of your organization, how many copies you would like to receive, and a brief explanation of the
Parade Magazine Covers Family Caregiving
The September 9, 2007 issue of Parade included an article by Gail Sheehy, "How Can We Help Our Nation's Caregivers?" about her personal experience as a family caregiver, as well as the challenges that face all family members suddenly thrown into the world of providing long-term care. Sheehy describes some of the policy and program innovations that exist to provide support for family caregivers, including paid family leave in California and caregiver training classes such as "Powerful Tools for Caregivers." She also points out the shortcomings in our long-term care system, including very limited Medicare and Medicaid coverage for people with chronic conditions. For more information, visit
Workshops on Sibling Issues
For individuals with disabilities, the relationship they have with their siblings is the longest family relationship they will have in their lifetime. As a result, siblings often become the caregiver for persons with disabilities as they both age. If they are provided with support and information, they can help their sibs live dignified lives from childhood to their senior years.
Throughout their lives, brothers and sisters share many of the concerns that parents of children with special needs experience, including isolation, a need for information, guilt, concerns about the future, and caregiving demands. Brothers and sisters also face issues that are uniquely theirs including resentment, peer issues, embarrassment, and pressure to achieve.
The Sibling Support Project is the United States' only national project dedicated to the concerns of brothers and sisters of people with special health, developmental and mental health concerns. They specialize in providing lively, family-friendly, and highly-rated workshops on sibling (and father and grandparent!) issues to audiences of parents, service providers, university staff and students, and siblings of all ages. This project is pleased to announce that they are now scheduling workshops for 2008.
Many agencies wisely value the families they serve and are committed to providing family-centered care and services. However, even the most family-friendly agencies often overlook brothers and sisters. Addressing siblings' concerns benefits everyone: brothers, sisters, parents, agencies, taxpayers and especially the family member who has special needs. In many important ways, brothers and sisters ARE the future - and are too important to ignore.
If you would like to learn more about The Sibling Support Project's workshops, seminars, and keynotes, call or contact them by email. Contact Don Meyer, Director, Sibling Support Project, at 206-297-6368, or firstname.lastname@example.org, or visit their website at www.siblingsupport.org.
Save the Date
NEW YORK CITY FAMILY CAREGIVER COALITION*
Second Annual Gala
Cocktail Reception, Member Exhibition and Presentation
Celebrating: National Family Caregivers Month 2007
Robert N. Butler, M.D.
President and CEO
International and Longevity Center USA
Topic: The Longevity Revolution
Ms. Gail Sheehy
Dr. Mary Ann Tsao
Tuesday, November 13, 2007
5:45 to 8PM
HIP Conference Center
55 Water Street; Third Floor
For information, contact Tamar E. Ogburn-Harraway at 646-447-7292
Caring for a Family Member,
Caring for Yourself
A Breakfast and Panel Discussion
Wednesday, October 24th, 2007
8:00 - 9:30 a.m.
Topics will include:
home safety (including fall prevention, adaptive devices and
telemedicine); caregiver stress; and elder abuse
Ben Barrack Auditorium
The Jewish Home and Hospital Lifecare System
120 West 106th Street
New York, New York
First in a Three-Part Breakfast Seminar Series
Focusing on Issues of Aging and Caregiving.
Future Breakfast Seminars: November 14th and December 11th
Seating is Limited. This event is Free!
R.S.V.P. by October 17th.
For reservations or additional information, call (212) 870-4907.
For the Nineteenth Annual National WSA Conference:
"Steeling" Some Me Time in the 'Burgh' - October 19-21,2007
Attend interactive Workshops on:
Loss of intimacy
End of life issues/Hospice
Men's and Women's Groups
Attendant Care Issues
Former Well Spouse Group
Caregiver Journey Workshop Presentation
Dinner and Dance Saturday Night
Register online! At the WSA home page: http://wellspouse.org
November 9 - 11: A National Working Conference for Family Caregivers Caring for Adult Siblings with Developmental Disabilities
If you are caring for a sister or brother with a developmental disability there is a conference just for you coming up in Washington, D.C. on Fri/Sat, Nov. 9-10, 2007. It's sponsored by a new National Sibling Leadership Network, which is a small, informal, but growing community of adult siblings, who have advocacy/support networks in several states. This meeting will be a conversation among siblings, researchers, service providers, and policymakers. The goal of the meeting is to translate the results of this conversation into a plan of action. During the conference plans are to ratify the Sibling Leadership Network's mission and values, discuss siblings' concerns with researchers and policymakers, and learn what current research reveals about brothers and sisters. For details, visit http://www.uic.edu/orgs/rrtcamr/SCresource.html.
Survey for Family Caregivers Caring for Loved Ones with MS
Do you provide support to a family member or friend who has multiple sclerosis (MS)? Do you sometimes feel like you don't know what to do, or how to help? A new research study is testing an educational program targeting the family members and friends of people with MS. The program includes basic education about MS, and covers topics such as managing the unpredictability of the disease, finding and using resources, and planning for the future. Dr. Marcia Finlayson from the University of Illinois at Chicago is leading the study, with funding from the Midwest Roybal Center and the National MS Society. For more information, or to see if you are eligible, please call 312-355-0525 or 312-996-4603.
Disaboom.com is a brand new web site created for adults and their family caregivers living with physical disabilities. Join their community and find valuable resources, health information, reviews and jobs in your area at: www.disaboom.com.
National Cancer Institute - Your Assistance Is Appreciated
The National Cancer Institute (NCI), a federal agency that is part of the National Institutes of Health (NIH) and the George Washington School of Public Health, would like to talk to women who are providing care for a family member or friend with cancer. We'd like to learn about your caregiving experience and how you have coped.
If you are:
Between the ages of 31 and 80
Currently providing care for someone over the age of 20 with cancer, OR you provided care for someone over the age of 20 with cancer at end-of-life within the last year
Please call us toll-free at:
(Monday to Friday, 9am-5pm EDT)
We will ask you some questions about yourself and your caregiving experience. Participating in this study involves a total of 15-20 minutes by phone. If they qualify, eligible participants may be asked to provide additional information about their caregiving experiences in a follow-up telephone interview that will last approximately 45-60 minutes.
2007 National Caregivers Conference - November 1 and 2
The 2007 National Caregivers Conference is an annual event that focuses on education, family supports, mental health and much more. The conference will take place on at Sheraton at Woodbridge Place in Iselin, New Jersey. This conference will host over 30 workshop sessions, informational exhibits and inspirational speakers. For more information or to register: http://www.nationalcaregiversconference.org.
He who cannot change the very fabric of his thought will never be able to change reality.
I, not events, have the power to make me happy or unhappy today. I can choose which it shall be.
Once the 'what' is decided, the 'how' always follows. We must not make the 'how' an excuse for not facing and accepting the 'what.'
Pearl S. Buck
To be what we are, and to become what we are capable of becoming, is the only end of life.
Robert Louis Stevenson
Action is the antidote to despair.
Blessed are the peacemakers, for they shall be called the children of God.
Integrity is one of several paths. It distinguishes itself from the others because it is the right path and the only one upon which you will never get lost.
If the sight of the blue skies fills you with joy, if the simple things of nature have a message that you understand, rejoice, for your soul is alive.
Kindness is the language which the deaf can hear and the blind can see.
I have found the paradox that if I love until it hurts, then there is no hurt, but only more love.
Three retirees, each with a hearing loss, were playing golf one fine March day.
One remarked to the other, "Windy, isn't it?"
"No", the second man replied. "It's Thursday."
And the third man chimed in. "So am I. Let's have a beer".
Two elderly ladies had been friends for many decades.
Over the years, they had shared all kinds of activities and adventures.
Lately, their activities had been limited to meeting a few times a week to play cards.
One day, they were playing cards when one looked at the other and said, "Now don't get mad at me .. I know we've been friends for a long time but I just can't think of your name! I've thought and thought, but I can't remember it. Please tell me what your name is."
Her friend glared at her. For at least three minutes she just stared and glared at her. Finally she said, "How soon do you need to know?"
THAT'S IT FOR THIS ISSUE
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