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Newsletter
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.

Enough said...

May your journey be gentle and beautiful!
In Love & Light,
Gail

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UPDATES AT THE SITE

NEW CAREGIVING ARTICLES AT THE SITE

If you are interested in submitting an article(s) please go to: Submit. You will find a form for submitting your article, bio/profile, copyright permissions, etc. Please review our guidelines for acceptance, submit and we will notify you upon acceptance.

Surviving Widowhood: My First Year by Sally A. Connolly -
A widow recommends ways to speed recovery and improve emotional health after the loss of a loved one. By using talents and interests, the bereaved can cope with the present and begin to move toward healing and a meaningful future.
Article

Energy Psychology by Jef Gazley -
Energy psychology is a revolutionary, quick, and painless way to resolve Post-Traumatic Stress Disorder and trauma.
Article.

From the Heart -The Missing Tube by Alan Cohen  
he article explores the deeper connections we seek to fulfill beyond material things through a simple story of a person who seeks happiness by wanting to be around others. Article

The Only Way To Hire A Contractor by Dale Adams
Article to inform seniors and caregivers the correct way to hire a contractor for home improvements such as handicap accessibility.  Article

Drug Traffic across the Canadian Border, by Cris Whitlock
The House of Rep. approved a measure to make it legal to re-import American made pharmaceuticals into the USA from Canada, but The Senate did not. Now "Rumor has it, authorities are looking the other way until such time as the Senate votes yeah or nay" Article

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PASSAGES

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.

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CAREGIVER CONCERNS

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.
At the end of dying is death itself. You will know this has happened because the chest will not rise and you will feel no breath from the nose. The eyes may be glassy (if they are open). You will not feel any pulse in the places where you felt it before. When you realize someone has just died, it is a very "still" and quiet moment.

Your goals

  • Help with comfort and rest.
  • Prepare for physical problems.
  • Prepare the funeral home ahead of time.
  • Avoid calling 911 or an emergency team.
  • Prepare a list of people to call near the time of death.
  • ?  Feel free to say goodbye at the place of death.

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.

Call for professional help if any of the following problems occur:

  • The person is uncomfortable-Dying should not be physically painful. Many medicines are available to give comfort during the final days of living with cancer, and health care professionals can order these for you and show you how to give them. See Cancer Pain for information about pain medications.
  • The person is having trouble breathing and seems upset, even if he or she is asleep or in a coma.-Medicines are available that can relax persons with cancer and help them to breathe. Oxygen also helps. Breathing problems can upset both you and the person being cared for.
  • The person has problems passing water or with bowel movements.-Even during the final days of life, people need to pass water and stool. Usually, the urine is dark and comes in much smaller amounts. It does not matter that the person is not eating or drinking. The body still makes waste. Hospice nurses are skilled at solving problems with urination and constipation, so call them for help.
  • The person has fallen.-Falls happen, especially when a person is weak or confused. After the fall, it may be difficult getting the patient back into a bed or a chair - especially if he or she is heavy or in pain. If you have difficulty moving the person, call for help while making him or her comfortable on the floor with a pillow under the head (and with a sheet or a blanket if necessary). If hospice or home care staff cannot come, local fire companies can be called for help or instructions about how to lift people properly. Hospice nurses also may show you how to gently help the person. If you have helpers, place a sheet or a blanket underneath the person and lift by using the sheet or blanket rather than by pulling on the person. This is a much easier and safer way to help someone back into bed or a chair.
  • You are having trouble giving medication.- Some people have difficulty swallowing and cannot take the pills that are needed for comfort. If a person is unconscious or in a coma, he or she cannot swallow and should take nothing by mouth (not even liquids). Most medicines can be given in other ways, such as by suppositories or injections. Ask the hospice staff to teach you the best way to give medicine.
  • You feel that you cannot go on caring for the person at home.
    Keeping someone who is very sick at home can be tiring and stressful. You should be honest with yourself about whether you can, or even want, to care for such a person at home. If you move the person to a nursing home or a special hospital unit, you can always move him or her back home, or to another person's home, when you have more energy or help. Home care or hospice nurses and social workers can explain your options and help you to decide what is best for both you and the person with advanced cancer.
  • You are upset thinking about being without the person who is dying.- Sometimes, grief hits you before the death occurs, and you feel afraid or overwhelmed. When this happens, share these feelings with an understanding person. Hospice staff and clergy are experienced and skilled in helping you with such feelings. Friends and relatives also can help if they are understanding and supportive.
  • You or the person with cancer feel that you are being punished, or you feel guilty or worried about something in the past. Feelings that you are being punished sometimes are mixed with guilt, regret, or sadness, as well as with feelings of being unable to forgive, get angry, or express love. Talking with hospice staff or clergy often can help to sort out your feelings and understand why you feel as you do. Understanding friends or relatives also may be helpful.

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:

  • Continue giving medicine for pain on a regular schedule. - A person can feel pain even in a coma, when dozing, or when not even conscious or awake at all. Keep giving medication at the same interval as before, such as every 4 hours. If you give less medicine, or give it less often, you may notice signs of pain. Watch for clenched fists, frowns, restlessness, moaning, or attempts to turn. Should any of these occur, check that you are following the correct schedule. If you are, ask the doctor about increasing the amount of the medicine.
  • Play soft music if it seems to be relaxing. - Music can be very soothing, even when a person is not conscious.
  • Have two people gently turn the person every few hours, or rearrange his or her position with pillows. - Turning the person does not have to be hard to do if you use two people. One stands on each side of the bed. Move the person from lying on his or her back so that he or she is tilting toward one side for a few hours. Then, a few hours later, turn the person completely on that side. As time goes on, repeat this in the other direction, returning the person back to lying on his or her back for a few hours and then to lying completely on the other side. Pillows and cushions can be used to prop knees or arms off the bed to avoid bed sores, and rolling a pillow and tucking it behind the back will keep the person lying on his or her side.
  • Use a folded sheet under the heavy part of the body to help with turning or lifting the person to the top of the bed. - Take any single- or double-sized sheet and fold it into a square that is a little larger than the bed underneath the person. Then, roll up half of this square, turn the person to one side, and slide the square under the patient. When you turn the person onto his or her back, you can pull and smooth out the rolled up half so that the person is now lying on top of the square. If you need to pull the person up in bed, have two people take hold of the square, on each side of the bed, and lift the square so that the person is lifted slightly off the bed and gently slide him or her to the top of the bed. This works because the heaviest weight of the person is off the bed and two people are lifting with equal pull on both sides.
    The square sheet also can be used to help with turning a person from side to side. Ask a visiting nurse or nurse's aide to show you how to do this, and practice with them until both you and those helping you know how to turn and move the patient.

  • Give back rubs, and maintain skin moisture with lotion.- Gently rubbing the patient's back, arms, legs, or hands with lotion relieves any muscle soreness and aches, and it helps the person to feel cared for and not alone. Avoid lotions with alcohol in them, however. The skin usually is dry at this point, and alcohol-based lotions will only make it drier.
  • Roll up washcloths or small towels, and place them inside the patient's hand after shaping it into a loose fist.- Sometimes, a weak person's hands can grow stiff and almost freeze in position unless they are massaged and moved. Gently roll the wrist back and forth, massage the palms, and then massage and move the fingers. Afterward, place a rolled washcloth inside the palm and shape the fingers around it.
  • Avoid using bright lights.- Soft lighting is easier on the eyes and promotes an atmosphere of rest. People with brain tumors often are bothered by bright lights or daylight; they prefer darker rooms. Explain to visitors why the bedroom or other setting is dark.
  • Moisten the patient's eyes, or use a warm, damp cloth over them several times a day. - Toward the end of a person's life, the skin dries out, and so can the eyes. If the eyes are left open and are very dry, they also can develop sores that are uncomfortable. You can avoid this by moistening a cloth and gently placing it over the person's closed eyes.
  • Moisten the person's lips, and use lip salve or balm to prevent dryness. - The lips and mouth also can get very dry, so use whatever balm or ointment has worked in the past to keep the person's lips moist. A few drops of water into the mouth every few hours can help to prevent severe drying. Some over-the-counter balms, such as Herpecin-L, also prevent mouth sores and ulcers, which can appear at the corners of the lips and cause discomfort.

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.

  • Keep the phone numbers of home health nurses, hospice staff, and physicians nearby.
    These numbers may be hard to find when you are under stress or feeling as if you are in a crisis situati on. Make a list, and keep it on the refrigerator or by the phone. Everyone helping with home care needs to know where these numbers are as well, so make sure to point them out.
  • Have pain, anxiety, or sleeping medicine at home in liquid or suppository form, or check that a local pharmacy has them.
    You may need to change from pills to liquid medicines or suppositories as the condition of the person with cancer changes. Hospice staff can talk you through a new way to give medicine, either during home visits or by phone. Most pharmacies have the necessary drugs in the forms that you will need. Hospital pharmacies can help as well, and the hospice or home care nurse can assist you in locating such medicines if you live in a small town or rural area. It is very important to plan ahead for how you will change from pills to liquids or suppositories.

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.

  • Fold a sheet to use as a lift sheet, and save newspapers or plastic bags to protect the mattress from any liquid or urine spills.
    During the final weeks of life, the person with cancer will likely be staying in bed. It is important to keep the bed clean and dry for sanitary reasons as well as to promote a feeling of well-being.

  • Select a pan that can hold water for any bathing that is done when the nurses are not visiting.
    Warm water baths, even in bed, are relaxing and make a person feel fresh. If the person with cancer allows family members or friends to do this, be prepared with a pan, washcloths, and a light blanket to keep him or her covered during baths.

  • Obtain extra sheets to fit the person's bed, even if you need to borrow them.
    Some families find they need extra sheets because they do not have the time or extra help to do laundry. Extra sheets also are can be helpful when lifting or turning the person in bed.

  • Keep candles, flashlights, and blankets ready if severe weather cuts off power.
    Power failures do occur. Have a few back-up lights ready by stocking candles, matches, and flashlights, and prepare to keep the patient warm with extra blankets.
  • Write information and instructions about home care and people to call in a single notebook.
    Tell people who are helping you where the notebook is, and ask them to read it and be sure they understand your instructions. This will ensure good care for the person with advanced cancer when you are away.

3. Prepare the funeral home ahead of time

  • Inform the funeral home that you expect a natural death in the near future.
    Preparing the funeral home staff will help them as well as you. They will recognize your name and be prepared when the death occurs, and they can check with the primary physician to be sure that the death is expected and "natural." Most hospices will make this call to the doctor or the funeral home for you, which reduces the chances of a misunderstanding or unnecessary questions when they come to take the body. Although rare, some funeral staff may wonder if any "foul play" has occurred (and if they should call the police). Such questioning happens more often in cities rather than rural areas, but no matter where you are, the hours just after death is not a time when you want to deal with suspicious people.

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.

  • Do not feel that you must call the funeral home immediately after the person dies.
    Once the person with cancer dies, some people want to "get on with it" and have the body picked up quickly. Others prefer to sit with the body, cry, and talk. Sometimes, friends and family who were not present at death want to see the body before it is moved from that last place where the person was alive. If so, wait for the others to arrive and express their grief. Time is no longer an issue. The body can stay in the home for quite some time before the funeral home staff needs to pick it up. If the person died in a chair, it is best to lay the body down on a couch or bed after death and the first goodbyes are said. Even if the person had lost a lot of weight, lifting the body will be difficult and probably take at least two adults.

4. Avoid calling 911 or an emergency team.Understanding what calling 911 means.

  • When you or someone else calls 911 or the emergency number in your area, you need to remember that the crew will arrive expecting to save a life or give "aggressive treatment'-even, in most states, if the person has a "living will" containing his or her wishes to the contrary. Ambulance crews are bound by law to do this. Aggressive treatment means inserting tubes, trying to start the heart if it has stopped, and attempting to move air into and out of the body. These attempts to restore life rarely work for people who have died from advanced cancer, and they do not help with the person's comfort.

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.

  • Ask someone you trust to tell others that calling an emergency team is not the best idea when the goals are comfort and care, not cure and life-saving. Be sure to tell people who sit with the patient or provide nursing care that calling 911 is not what you and what the person with cancer want (if that is truly the case). Post this information on the refrigerator or near the phone if you are not home while others are providing care.
  • Call the hospice or home health staff if the patient has fallen.
    If the hospice or home health staff cannot visit, ask if you should call 911 or your local emergency response number. They can help you decide what the next step should be, and they are available 24 hours a day.

5. Prepare a list of people to call near the time of death

  • Decide who would want to visit the home near the time of death to say a final goodbye.
    One way to know this is by listening to people's requests. Some will ask to be called when the time is near. As a caregiver, however, you cannot be all things to all people. Ask someone else to make a note of who wants to be called. Not everyone will be home or available by phone that day, so ask your designated caller or someone else to take responsibility for calling those who could not be reached.
  • Make a list of people who want to know when the person dies or to hear near the time of death.
    After you and any family and friends decide who wants to be called near the time of death, make a list of their names and phone numbers. Otherwise, make a list of how to get in touch with these people so that they are told about what has happened.
  • Decide who would be most helpful to you near the time of death.
    You likely will feel tired and stressed near the time of the person's death, and this is when you need, and should get, help. You will give better care and be under less stress if you get this help from others. If possible, tell them in advance that you may need help; otherwise, just call and say, "Could you do this for me?"
  • Ask selected adults to be "on call" to help with any younger children near the time of the person's death.
    Some adults have a way with children, and children also like and trust certain adults. If you know such adults, ask them to play with and help any children who are present.
  • Decide if clergy or a counselor should be called before or at the time of death.
    People with advanced cancer may want to talk to a minister, priest, rabbi, or counselor when they are very ill or dying. Prayers, rituals, and silences with these people can be very comforting to the person letting go of this life as well as to those people involved in his or her care. If the person with advanced cancer wants this, call ahead of time and ask the minister or counselor to visit before the time of death.

Possible Obstacles

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.

Think of other obstacles that could interfere with carrying out your plan
What additional roadblocks could get in the way of the suggestions in this guide? For example, will the person with advanced cancer cooperate? How will you explain what is needed to other people? Do you have the time and energy to carry out the plan?

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.

Checking on results

Ask yourself if the person you are caring for is comfortable and if his or her wishes are being followed. Also, ask if you have the physical and emotional strength to give the care that is needed. If not, other settings, such as nursing homes or a hospice or palliative care unit in a hospital, are available.

If your plan does not work

Helping someone to die at home is hard work, and you may need to take the person you are caring for somewhere else to live out the final days of his or her life. This is not a failure on your part. Family members and friends can visit and not feel so responsible for nursing care or for keeping the patient comfortable. You can still help to give basic care in a nursing home or a hospice as well and be sure that the person is comfortable.

Copyright© 1997 by the American College of Physicians.


American College of Physicians - The American College of Physicians gives permission to reproduce and distribute copies of this plan provided it is not altered and its use is not for profit. Users can remove the left column (containing the book contents and the word "Top") when making copies for distribution. For information on translation, subsidiary, and for-profit use, contact David Myers. Phone: 215-351-2642; fax: 215-351-2644; e-mail: dmyers@mail.acponline.org.

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IMPORTANT NEWS

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.
Protect Your Health.
Reach Out for Help.
Speak Up for your Rights.

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!

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Alzheimer's Breakthrough Act of 2007

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. 

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AARP Foundation Woman's Scholarship Program

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;
2. individuals who are underemployed (in a job with limited pay, limited growth opportunities and limited benefits); 
or
3. grandmothers or other female relatives raising another family member's child/children (with the ability to demonstrate significant financial responsibility for those child/children).

Deadline
The on-line application will be available beginning August 31, 2007. Complete applications must be submitted no later than October 31, 2007. 2008 scholarship recipients will be notified in January 2008. Scholarship funds will be made available shortly thereafter.

Awards
Scholarship awards will range from $500 to $5,000, depending on financial need and the cost of the education or training program. The AARP Foundation will award up to 100 scholarships during the first award cycle.

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
The program application may only be submitted on-line. The application form and additional information on the scholarship program is available at www.aarp.org/womensscholarship beginning August 31, 2007. Click on the "Apply for a new scholarship" link. Follow the onscreen instructions to apply for an AIN (applicant identification number). Remember to write down the applicant identification number. When prompted, use AFWSP as the access key.

Program Administration
To assure complete impartiality in selection of winners and to maintain a high level of professionalism, the program is administered by Scholarship Program Administrators, Inc., a firm that specializes in managing sponsored scholarship programs.

Questions
For additional information regarding the scholarship program contact:
AARP Foundation Women's Scholarship Program
c/o Scholarship Program Administrators, Inc.
P.O. Box 23737
Nashville TN 37202-3737
Fax (615) 320-3151
www.aarp.org/womensscholarship 
(Access Key: AFWSP)
~

URGENT APPROPRIATIONS ALERT

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.

Status: The House version of FY 08 Labor, HHS, Education Appropriations bill, which passed the House of Represenatives in July, includes $10 million for the Lifespan Respite Care Act, thanks to an amendment offered by Reps. Ferguson (R-NJ) and Langevin (D-RI). Currently, the Senate companion bill has no funding for Lifespan Respite, but language to fund Lifespan Respite at $10 million could be included before the bill goes to the Senate floor as early as the week of Oct. 15. The new law cannot be implemented in even a few states unless Congress appropriates the funding for FY08.

ACTION: Please contact your US Senators and urge them to accept the House proposal of $10 million for Lifespan Respite. To identify your federal legislators and their contact information:
1. Visit www.congress.org and enter your zip code. Send an email/fax with the message below.
2. Visit them while they are home during the Columbus Day Recess (week of Oct. 8). Call today to get an appointment. You can get local district office phone numbers at www.congress.org
3. Call them directly in DC. Call the Capitol Switchboard at 202-224-3121 and ask for the Senator's office. Then ask for staff who handles appropriations or health issues.
MESSAGE:

  • Preserve the $10 million for Lifespan Respite Care Act passed by the House in the FY 08 Labor, HHS, Education Appropriations bill. The Act is based on model State Lifespan Respite Systems in Oregon, Nebraska, Wisconsin and Oklahoma, which provide easy access to an array of affordable, quality respite services; ensure flexibility to meet diverse needs; and assist with locating, training, and paying respite providers.
  • Respite, the most frequently requested family support service, has been shown to provide family caregivers with the relief necessary to maintain their own health, bolster family stability, keep marriages intact, and avoid or delay more costly nursing home or foster care placements.
  • In these times of serious budget constraints, the economic value that accrues from respite is exceptional. Delaying nursing home or institutional placement of just one individual with a chronic condition for several months can save Medicaid, private insurance, or the family thousands of dollars.
  • The nation's estimated 50 million family caregivers provide 80% of long-term care. The value of uncompensated family caregiving services to the U.S. economy is estimated at over $300 billion a year, more than twice what is spent nationwide on nursing homes and paid home care combined and comparable to Medicare spending in 2004.
  • American businesses lose $17.1 to $33.6 billion annually in lost productivity costs related to caregiving responsibilities.
FREE PUBLIC EDUCATION DVD's
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.

"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: tothecontrary@hotmail.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

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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
http://www.parade.com/articles/editions/2007/edition_09-09-2007/Caregivers.

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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 donmeyer@siblingsupport.org, or visit their website at www.siblingsupport.org.

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Save the Date

NEW YORK CITY FAMILY CAREGIVER COALITION*
Second Annual Gala
Cocktail Reception, Member Exhibition and Presentation
Celebrating: National Family Caregivers Month 2007

Keynote Speaker:
Robert N. Butler, M.D.
President and CEO
International and Longevity Center USA
Topic: The Longevity Revolution
Additional Honorees:
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.
~
The Well Spouse Association invites you to Pittsburgh, PA
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


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.

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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:

Female
African American
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:
1-888-249-0029
(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.

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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.

INFORMATIVE CAREGIVING ARTICLES & INSPIRATION

Quotes

He who cannot change the very fabric of his thought will never be able to change reality.

Anwar al-Sadat

I, not events, have the power to make me happy or unhappy today. I can choose which it shall be.

Groucho Marx

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.

Joan Baez

Blessed are the peacemakers, for they shall be called the children of God.

Matthew 5:9

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.

M.H. McKee

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.

Eleonora Duse


Kindness is the language which the deaf can hear and the blind can see.

Mark Twain

I have found the paradox that if I love until it hurts, then there is no hurt, but only more love.

Mother Teresa

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MESSAGE BOARDS & EMAIL BAG

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JOKES & HUMOR

Hearing Loss

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".

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Senior Moments
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?"

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THAT'S IT FOR THIS ISSUE

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