In my last blog I focused on advocacy and awareness on a broader level; in this session I would like to talk more about the individual sharing of experience and how it can affect others. I am amazed by the strength and courage of Mesothelioma victims and families. They are fighting a rare disease, often with limited information and resources. I have found that a primary support resource can simply be others who are experiencing the same or a similar diagnosis. Some clients who wonder how they can help on an individual level are often surprised how valuable simply sharing their own experience can be to others. I would like to remind those of you struggling with Mesothelioma and other asbestos-related diseases how strong and influential your voice can be.

Sharing your personal diagnosis and treatment experiences often helps other patients. It can also assist providers and researchers. Your story can be shared in a variety of ways: person-to-person, during meetings with providers, in a local or online support group, or in an online community (such as the one here at the MesoRC).

Your story and experience can help others by:

• Letting others know what they can expect from the diagnosis and/or treatments.

• Establishing an understanding of treatment options and their potential effectiveness with this rare disease.

• Giving others ideas about how to manage the symptoms of Mesothelioma.

• Providing techniques and ideas for getting through various treatment options.

• Spreading information regarding resources available and where and how to utilize them.

• Allowing clinicians and researchers to learn from those with first hand knowledge of Mesothelioma and asbestos-related illnesses.

• Offering hope and empathy to others who are living through similar challenges.

Each of us has a unique experience that can provide knowledge and support to others. You can help others survive their disease and cope with everything it entails along the way. Please remember how valuable your story is and how much you can help others by sharing it.

Everyone dealing with Mesothelioma and other asbestos-related illnesses knows the importance of having knowledge of treatment options. Unfortunately, we also know the limitations of the current research and treatment options. More funding is needed to stimulate research to develop more effective treatment for Meso patients. You may be wondering how you can help. You and others affected by this disease can take steps to spread the word about Mesothelioma and collectively ask for much needed support. Below I’ve listed some ideas of how to increase awareness and advocate for victims of Mesothelioma and other asbestos-related illnesses:

Raise Awareness:

• In your community by educating others and raising funds for the cause.

• At school or work by educating your peers and encouraging them to become involved.

• In the media by news releases, letters to the editor, offering an interview, and public service announcements.

• In the government by making your voice heard to elected officials.

Take Action:

• Send emails to key government leaders and decision-makers for a fast, easy way to get your voice heard.

• Write letters to key government leaders to show your commitment to the cause.

• Make phone calls to your Members of Congress and their Health Legislative Assistants.

• Schedule a visit with local government leaders to educate them about Mesothelioma and the importance of asbestos related legislation.

Other ideas to get involved:

• Be knowledgeable – learn as much as you can about Mesothelioma and asbestos

• Tell your story – increase awareness by telling your personal story (in your community, in the media, on the internet, etc.)

• Volunteer – dedicate some of your time to fundraising efforts locally or nationally

• Form a local support network – with other victims, families, and providers touched by Mesothelioma and other asbestos related issues

• Develop contacts – with anyone who may assist us in fighting for this cause (ex. Legislators, Union Representatives, Veteran Groups, Celebrities, and other community leaders)

In October the Bill to Ban Asbestos passed in the Senate (see previous blog – Bill to Ban Asbestos Passes Senate for additional information). It now moves on to the House of Representatives at the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2007 / H.R. 3339. This is an example of where the work of grass roots agencies and victims working together to educate and inform leaders in regards to this much needed piece of legislation.

You can make a difference by taking action and raising awareness in your community and on a larger scale. You can also contact agencies such as the Meso Foundation and the Asbestos Disease Awareness Organization for other ideas and opportunities.

Eating well becomes more important for people diagnosed with Mesothelioma and other cancers. Getting the proper nutrition is difficult enough for the average person, and it becomes even more challenging when faced with the loss of appetite and nausea that many Mesothelioma patients experience. The disease itself or side effects from treatment can make it hard to maintain nutritional health. The goal is to eat a healthy, balanced diet in order to feel better and remain stronger. A Mesothelioma diet differs from a suggested diet for a non-Meso patient, which can be confusing. Rather than focusing on large portions of fruits, vegetables, and whole grains with moderate amounts of meats and dairy products and limited fats, sugar, and salt; the Meso diet recommends a higher calorie and protein intake. Below I’ve listed some of the main reasons for good nutrition and some tips for eating when diagnosed with Mesothelioma or another cancer.

Eating a Healthy Diet will:

• Help patient to maintain weight, keep strength and energy

• Increase protein level needed to help build and repair body tissues

• Allow patient to tolerate treatment better

• Strengthen your immune system, allowing the body to fight infection more easily

• Raise patient’s outlook and quality of life

Tips for Maintaining a Healthy Diet:

• Drink plenty of fluids – try drinking between meals rather than with meals, to avoid feeling full

• Focus on eating high calorie and high protein foods (nuts, eggs, cheese, peanut butter, milkshakes, etc.) – use butter, margarine, creams, and gravies to boost calories

• Try adding protein powders to drinks

• Liquids and soft foods may be better tolerated than solids, especially if you are nauseous

• Snack frequently throughout the day or whenever you feel you can

• Vary your mealtime routine

• Try new foods and/or recipes (your tastes may change)

• Use plastic utensils if food tastes metallic

• Eat with friends and family, with the television or the radio on, which can stimulate your appetite

• Let others prepare your food to save energy and avoid cooking odors

• If possible, engage in light exercise one hour prior to meals to stimulate appetite

• Use food supplements, such as liquid drinks and powder

• Ask your doctor if you need a nutritional supplement, such as a multivitamin or another supplement

• Plan ahead: stock pantry and freezer, keep foods that need little or no preparation handy, cook in advance and freeze meals, and/or ask for help with shopping/cooking

If you have nutritional questions or need assistance planning your diet, talk to a dietitian. They can work with your specific symptoms and needs to individualize a plan.

Caring for a loved one who has been diagnosed with Mesothelioma or another serious medical condition can be emotionally and physically exhausting. As caregivers we sometimes forget the importance of taking care of ourselves. I have worked with caregivers who have become overwhelmed, fatigued, and suffered from “caregiver burnout”. At times caregivers feel guilty if they take care of their own needs. It is important to remember that if we don’t take care of ourselves during this challenging time, then we may become unable to provide proper care to our loved ones.

Below is a list of tips on how to take care of yourself while providing the best possible care to your loved one:

1. Take time for yourself (schedule breaks into your day, get a good nights rest, practice self care and stress management strategies, and pamper yourself whenever you can)

2. Practice good nutrition (eat balanced meals and drink plenty of water – your health and nutrition are just as important as your loved one’s)

3. Exercise (a short walk a few times a week is a good start – exercising is a good way to take a break, decrease stress, and increase your energy)

4. Prioritize your tasks (make a list of tasks that need to be completed, do only what is most important, and delegate tasks to other friends and family members)

5. Be realistic (set boundaries, keep daily “to do” list reasonable, don’t feel you need to do everything yourself, and keep realistic expectations of yourself and others)

6. Continue activities that are meaningful to you (listen to music, work in the garden, continue your hobbies, and schedule time away from home or with friends/family)

7. Keep your sense of humor (try to find humor in everyday and remember “laughter is the best medicine”)

8. Consider getting outside support (attend a support group, gain strength from your faith or religious affiliation, access local community resources, and/or internet support options – these options provide us not only with a place to get assistance, but also an opportunity to help others)

9. Seek professional help (you may find yourself feeling lonely, anxious, guilty, angry, scared, frustrated, confused, lost, or tired – you may feel any or all of these – and if you feel overwhelmed by these feelings contact your doctor, social worker, hospice staff, or another community resource for help)

Most of us will play a role in the caregiving process at some point in our lifetime; as a caregiver, a recipient of care, or possibly both. Your role as a caregiver makes a tremendous difference to your loved one. It demonstrates kindness, love, and loyalty. Be gentle on yourself and remember that you are doing the best you can.

In a past blog, I talked about planning for the future needs of a person suffering from a major medical illness such as Mesothelioma or other asbestos related illness. I touched on the general issues that may need to be addressed. In this blog, I will focus more specifically on the options for assuming control of financial and medical matters. At some point, a family member or other concerned individual may need to assume responsibility for decision making and will need the authority to do so. How and when these actions take place, depend on a variety of issues. Understanding the different options will help you and your family make the right decisions for your circumstances.

Below are explanations of some of the options used to manage your loved one’s affairs:

• Restricted Bank Accounts: Co-signatory accounts require two signatures for withdrawal (unless one owner becomes incompetent and unable to sign). Accounts with permanent withdrawal orders (where the bank issues a monthly allowance to holder) and deposit orders (such as direct deposit of benefits checks) are also options.
• Representative Payee for Social Security: The Social Security Administration can appoint a person or an organization as a “payee” to receive and cash the monthly public assistance checks (Social Security, Social Security Income/SSI, Veteran’s Benefits) for a recipient deemed incapable of managing his/her own funds.
• Power of Attorney: A document which authorizes another person to act on behalf of the individual granting the “Power of Attorney”. The person giving the power is called the “Grantor” and the person granted the power is called the “Attorney-in-Fact”. The authority given can range from general powers, allowing the Attorney-in-Fact to handle all financial transactions and affairs, to limited powers such as handling the check book only. The principle must be competent when appointment is made. The Power of Attorney remains in effect until revoked by the grantor or upon the incompetence of the principle. To continue a Power of Attorney beyond incompetence, the document must be a Durable Power of Attorney.
• Conservatorship: A legal process where the court appoints a person to handle just the real estate/property and financial matters of the ward who is unable to do so. A petition for conservatorship must be filed in Probate Court. This may be used when a person is no longer capable of acting in a responsible manner regarding financial decisions, but is still capable of making appropriate decisions regarding their personal care.
• Guardianship: A “guardian” is appointed by the court to make personal, health care, and financial decisions for a person who, due to either mental or physical disability, is incapacitated. The incapacitated person is referred to as the “ward”. The guardian assumes the responsibility to make all decisions regarding personal affairs, health care, and financial matters. (Note: Properly executed Advance Directives – Durable Power of Attorney and Health Care Proxy – go a long way in making certain that the person’s wishes regarding both personal and financial decisions will be met if the patient is no longer capable of doing so. However, if the patient has not given anyone legal authority to act in their place and they are no longer capable of making these decisions, the courts can be asked to appoint someone to take on this responsibility.) A petition for Guardianship is a detailed process that requires filing of necessary papers in the appropriate court.
• Advance Directives: An advance directive is a document you prepare to inform others of your wishes should you become medically incompetent to make your own health care decisions. Medical personnel must abide by the decisions of your agent as if you were making the decisions yourself. Although the form is a legal document, you do not need an attorney to complete one. Each state has its own guidelines and requirements for advance directives.
• Trust: A trust is an arrangement in which a person (trustee) holds property, real or personal, for the benefit of another (beneficiary). The court is not involved in a trust. The trustee’s authority is confined to what is outlined in the trust arrangement. There are many types of trusts and professional advice should be sought.
• Living Will: A Living Will is a set of written instructions that outline the patient’s health care wishes at the end of life. If a person completes a Health Care Proxy form and also has a Living Will, the Living Will provides instruction for the proxy. This document differs per state - find out how a Living Will is handled in your state.
• Health Care Proxy: The Health Care Proxy is a simple legal document that allows you to name someone to make health care decisions for you (if for any reasons and at anytime you become unable to make or communicate those decisions). Some states only recognize a Health Care Proxy, some use Advance Directives, and some may have a combination. (Note: Choose your proxy wisely. Be sure you know and trust this person. Also, be sure to educate this person regarding your beliefs/wishes and confirm they can fulfill these personal decisions.)

Researching your options is the first step. Deciding what will work for you and your family is the second. As always having these discussions is difficult, but helpful (especially when having the conversations before you are in crisis and having them again over time). Medical and financial providers will be able to provide additional guidance and assistance. Social workers, case managers, attorneys, and financial planners will be able to look at the specific circumstances to help you navigate these crucial decisions.

You may also be interested in getting more information at the following sites:

http://www.caringinfo.org – Caring Connections
http://www.putitinwriting.org – American Hospital Association
http://www.agingwithdignity.org - Aging with Dignity
http://www.naela.com - The National Academy of Elder Law Attorneys