Organizing Community to Aid Those affected by aging, illness and/or injury

This post is dedicated to Bev, who has helped to keep so many of us in the Old Time music community connected over the years, first using letters and then e-mails.

With the graying of the “baby boom” generation, as well as once terminal diseases now treatable as chronic conditions, the need for communities to organize to support those who are ill, injured or aging is paramount. While it is up to the person dealing with such issues, and their families, to make choices about the care they receive, this can be emotionally, physically and financially overwhelming. Further, insurance covers some things and not others. In today’s economy, most adults are working, including many who in past generations would have been retirees. Women, once the primary caregiver in their families, are now an established part of the workforce and it’s not as easy for them to stop and be a full time caregiver.

In generations past, community would take care of one another, as there were no such things as social service agencies, community action groups etc. We have evolved into a society that believes we should “let the experts do it.” Unfortunately, many of the organizations that were designed to help with such needs are folding, can’t keep up with the demand and not infrequently tell potential clients, “while you qualify for services, you’ll be on a waiting list.”

The good news is that we have tools at our hand that past generations didn’t have, which can make it much easier to organize and help one another. People do best when they feel they are needed, so volunteers will come forward if they know how to sign up, there isn’t a lot of “red tape” involved in becoming a volunteer, they are not overwhelmed with responsibility and believe that what they are doing makes a difference.

While we may not have the community skill sets that our forefathers had, we can learn and we have quicker ways of doing so thanks to things like the internet, television and continuing education.

Community can be defined in a number of different ways. It can be a distinct neighborhood in a large city, a rural town, a suburb, an apartment complex, senior housing, or even a network of friends. However, the end result is the same-a group of people who are connected and wish to remain that way regardless of injury, illness or age.

Below are six basic elements that help people heal and maintain their health. The more a community (as you define it) can organize around these components, not only will it reduce the overall cost of care, but it significantly increases the chances the person will remain part of the community.

How you use this information will very by where you live, how you define community, and what resources already exist. You can read this post from the viewpoint of what you can do as an individual to help your community, or use it as a way to begin a community discussion.

Keep in mind that if you want to see things change, it starts with you. This post is a place to begin the discussion about the needs of those who are aging or have a chronic and/or life threatening and how community can help. Keep it going by posting your ideas, suggestions or things you are doing in this regard to this blog and/or to the Healing Whole Facebook page.

This is a work in progress, and I will be happy to update this periodically.

Organized support. The two questions that people ask when they learn that someone has been injured or newly diagnosed are “How are they,” and “What can I do to help?” To both these questions, the simplest approach is that a good friend and/or family member(s) establish a Lotsa Caring Hands website. This is a private, web-based caregiving coordination service that allows family, friends, neighbors, and colleagues to create a community to assist a family caregiver with the daily tasks that become a challenge during times of medical crisis, caregiver exhaustion, or when caring for an elderly parent .Each community includes an intuitive group calendar for scheduling tasks such as meals delivery and rides, a platform for securely sharing vital medical, financial, and legal information with designated family members, and customizable sections for posting photos, well wishes, blogs, journals, and messages. This is a free service and does not take long to establish. Further, people who do not use the web can be paired with those that do, so that their services are included.

Even if a person lives in another town, this is still a good way for them to understand what is going on and what they can do to provide support-e.g. send gas cards to people who are signed up to do a lot of the driving, arrange for a weekend away for the primary care givers. For other ideas see How to Respond When Someone is Ill or Injured.

It is now possible for community organizations, such as churches, civic clubs, schools and social groups to establish a Lotsa Helping Hands page to coordinate volunteers to help those in their specific communities who might be in need. Many communities now have listservs and on-line bulletin boards, which can help connect volunteers to those who have specific requests, such as rides to a medical appointment. If your community doesn’t have something like this yet, try starting a free Facebook Community Wall.

Information: There are two types of information that people need. The first is resources in their community, county and state that are available to help them. Providing it in a handout form, with a more detailed website, blog and/or Facebook page will make it possible for more people to access it. Places where people gather, such as churches, civic groups, chambers of commerce, town and city offices, schools, libraries, hair salons, and office buildings should be made aware of web activities and have handouts available. While most states now have 2-1-1, the information and referral service helpline, there are often community based services they may not be aware of. Use the template of the “Getting What You Need Checklist,” tailor it to meet the needs of your community. Check out “Getting What You Need Checklist: Cavendish edition,” to see how one community has adopted it.

The second area is health information. While the internet is a wonderful resource tool, there is a lot of misinformation, outdated materials and sites that are nothing more than snake oil. In fact, health scamming escalates when it’s a chronic and/or life threatening condition. Helping people find the correct health information in a format they can understand can make a world of difference in how they will deal with their health issues.

Having worked on a librarian outreach project for several years, I know that people turn to their friendly librarian over other community resources, including the local health center or hospital, for both health and community information. In fact, there is at least one graduate school, which offers a combined MLS (masters of Library Science) and MSW (masters of Social Work) degree.

Libraries can increase their responsiveness by:
• Weeding health related books on a yearly basis. Ask your local health center, or someone similar, to do this for you. Also ask them to provide recommendations, extra copies of material etc. Do not believe that more is better and leave out of date books on the shelf as it can be hazardous.

• Book marking appropriate medical sites on patron computers, including e-patient sites. Again, talk to your local medical provider about their recommendations.

• Contacting local chapters of national health organizations (e.g. American Cancer Society) and obtaining current materials, which are generally free.

Places of worship, salon/barber, bar/pub, place of employment are others place where people turn for help and information. There is no need to reinvent the wheel if the library is already doing a good job in providing health information and there is a good resource handout that all can use. However, since people will gravitate to free computers, identify where those are in your community, and bookmark where possible.

Personal health journal. This can be done on-line, or in print. This is recommended for three reasons:

• There is a growing e-patient movement, whereby people with similar diagnoses share information about their condition as a means to better understand what treatments and approaches might be helpful for their condition.

• It helps the person and caregiver keep track of who the providers are, what meds are being taken, what they might be allergic to, what’s been tried etc. This is a very helpful tool in situations where several family members may be providing care for an individual, such as elderly parent. This way, everyone that needs to know what’s going on (e.g. who the doctors are, latest lab work, medications etc.) is kept informed.

• Even with the move toward “paperless offices,” information isn’t always available during office visits, and doesn’t always transfer when you visit a different practitioner.

Having designed a print “Health Notebook,” we found that the highest users were caregivers. People experiencing a health crisis were also more likely to use one, but again they would ask their advocate and/or family member to fill it out for them.

Communities can assist in the process by providing training on use of a personal health journal in print or on line.

Learn More
Managing Health Information Online: Yours/Theirs

Being an e-Patient: Social Networking for Health

Advocacy: The health care system is a maze that many become so confused by, they don’t get the care they need. Further, medical appointments can be traumatic and it’s very helpful to have an unbiased person taking notes and reviewing them after appointments. A “friend with a pen” can make for a much better visit.

Some condition specific organizations provide advocates, so that is a good place to start. A community may want to develop its own set of advocates and/or train family and friends how to do this.

Learn More
• Health Advocate-Who, What, When and Where

• How to be a “friend with a pen.”

Support Group: Study after study shows that people who participate in support groups do better. Today, with the availability of the internet, on-line support is available 24/7. This is also the dawning of the e-patient age, where patients are actively involved in helping to study what works and what doesn’t.

Communities can help by providing resource information about locally occurring support groups, links to the local chapter of national organizations (e.g. American Heart Association) and being willing to offer free space where such groups can meet.

Learn More
Being an e-Patient: Social Networking for Health

Finding Support on-line

National condition specific organizations

Well Being: In 2008, nef (the new economics foundation ) was commissioned by the UK Government’s Foresight Project on Mental Capital and Well-being to identify a set of evidence-based actions to improve well-being, which individuals would be encouraged to build into their daily lives. In reading the Five Ways to Well Being below, assess how well you and your community enables its members to achieve these and what can be done to improve opportunities to increase well being for all.

Connect: Connect with the people around you. With family, friends, colleagues and neighbours. At home, work, school or in your local community. Think of these as the cornerstones of your life and invest time in developing them. Building these connections will support and enrich you every day.
• Are there places in your community where people can gather such as parks, playgrounds, cafes? Are they handicap accessible? Are these places inclusive, where everyone is welcome or are they restricted in some way?

Be active: Go for a walk or run. Step outside. Cycle. Play a game. Garden. Dance. Exercising makes you feel good. Most importantly, discover a physical activity you enjoy and one that suits your level of mobility and fitness.
• Are there places in your community where people can walk, ride bikes and engage in other outdoor exercise? Are they handicap accessible. Does your community offer community and school vegetable gardens? What about sliding scale fees for fitness and well-being classes (Bone Builders, yoga, mindfulness) and/or gym memberships?

Take Notice: Be curious. Catch sight of the beautiful. Remark on the unusual. Notice the changing seasons. Savor the moment, whether you are walking to work, eating lunch or talking to friends. Be aware of the world around you and what you are feeling. Reflecting on your experiences will help you appreciate what matters to you.
• Does your community offer seasonal events, such as harvest festivals in the fall, or a holiday bazaar? Are these events handicap accessible? Does everyone in the community feel welcome?

Keep Learning: Try something new. Rediscover an old interest. Sign up for that course. Take on a different responsibility at work. Fix a bike. Learn to play an instrument or how to cook your favorite food. Set a challenge you will enjoy achieving. Learning new things will make you more confident as well as being fun.
• Are adult learning opportunities available in your community, or in a neighboring one? Do people take advantage of them? If not, why not? Does you community have a time banking system, where in exchange for your time and ideas, someone can teach you how to do something? Are there community theater, art programs and other such activities available that anyone can participate in? Are these opportunities available to all?

Give: Do something nice for a friend, or a stranger. Thank someone. Smile. Volunteer your time. Join a community group. Look out, as well as in Seeing yourself, and your happiness, linked to the wider community can be incredibly rewarding and creates connections with the people around you.
• Is there an easy way for people to volunteer in your community? Are new people made to feel welcome as volunteers? Are there a variety of ways people can participate regardless of age, gender and abilities?

Learn More
Healing the Whole Person: Ways to Increase Well-Being

Additional Resources
Aging in Place

Caregiver Resources

There are also a variety of topics that have been highlighted on the right hand side of the Healing Whole Blog

Take a Break: August Holiday Gifts to Start Now -2011 Edition

In August of 2010, I posted five items to start making for the holiday season in December. Here are five ideas for 2011.

Fudge in Cookie Cutters: No you aren’t going to make fudge now for December, even though lots of candy companies are well into their holiday production. Instead, start looking, while holiday items from last year are 75% off, for metal cookie cutters.

There are many holiday fudge recipes, but the marshmallow http://southernfood.about.com/od/fudgerecipes/r/bl40214h.htm variety is pretty fail proof. Line a cookie sheet with aluminum foil. Place cookies on it, just as you would if you were cutting out a cookie. Pour the fudge into each cookie. While soft, decorate with M & Ms and other small candies. Let harden. Wrap and you will have given two gifts in one-fudge and a cookie cutter. Actually, include a note card, with a pretty ribbon, and write that the cookie cutter can be hung on their Christmas tree with the enclosed ribbon.

Other uses for Cookie Cutters: Use them to mold Rice Krispie Treats or cut out brownies and decorate. Whether it’s a brownie or fudge, small peppermint sticks make good “trunks” for your Christmas trees.

Popsicle Bracelets: There are lots of popsicles around, so this is the perfect project for summer.

Frame a Game Board: Games like Candy Land, Monopoly, Clue and Chutes and Ladder are often available for cheap at flea markets, and tag sales. Purchase one with a decent board and frame it. Attach game pieces to the back, so someone can play it if they want it. Great present for a friends that you may have played the game with as a kid.

Water Balloon Candle Holders

Environmentally friendly cleaning products: An ideal gift for the friend that has everything, or the one that wants to be a lot “greener,” or consider it for members of your support group, who shouldn’t be exposed to harsh chemicals anyway. I have given various members of my family what I think are superior cleaning tools that reduce chore time, save money and yield good results. People liked them. Starting in August, you have time to test out different formulas, pick up spray bottles and containers and even harvest herbs that will make sachets that are moth and beetle repellents. To get started, check out Naturally Clean. Include your “recipes” so they can make their own.

Healing Whole Now on Facebook

August marks the 2nd year anniversary of my starting the Healing Whole Blog. I've started a Facebook page This way I can link to articles that may be of interest and increase topics of conversation.

Being an e-Patient: Social Networking for Health

                                                          UPDATED APRIL 2015

This week, I watched Dave deBronkart’s presentation on TED Meet e-Patient Dave and as a result read a great deal about how patients are using social networking to heal. This presentation, along with new research recently released by Patients Like Me, is forging a whole new path in health care that is being driven my patients. While I have been a major advocate for both patient empowerment and the usefulness of belonging to a support group, social networking provides a very useful tool for people living with chronic and/or life threatening conditions.

Patients like Dave aren’t the only ones fueling this movement. Tom Ferguson, MD, has written about the “empowered medical consumer since 1975. In fact, he was the section editor for health, medicine and self-care for “The Whole Earth Catalogue.” He was also an early advocate for the development of on-line health resources and the new field of Health “Informatics.”

With more and more patients moving away from “content” sites, and choosing social media sites, medical centers are taking note. On July 5, 1911 the Mayo Clinic launched a social network site for patients and caregivers. Within the first seven days, they had 1,000 enrollees. Not limited to Mayo Clinic patients, the site is free and is open to anyone, not just those who have been patients at Mayo Clinic. It includes content from various Mayo Clinic blogs, health and medical videos from Mayo's YouTube channel and links to news articles about Mayo Clinic research and treatment advances, along with a member discussion forum. Clearly the e-patient is here and it wont be long before other medical centers will begin offering programs similar to what Mayo Clinic and Patients Like Me are offering. In fact, if you want to know how your hospital is doing as far as social networking, check out Found in Cache: Social Media resources for health care professionals.

Some take home points about being an E-patient:
• Keep a personal health notebook (be it on-line or written) and make sure you have “your data.”

• Participating in an on-line community can help you identify a variety of resources and treatments, to say nothing of emotional support. Don’t limit yourself to content sites only. Social networks are playing a very important role and will most likely play an even bigger one in the coming years.

• By sharing your data, as described in the Patients Like Me article, you can help to better determine what treatments might work for you as well for those with similar conditions.

• Use the same cautionary measures you would use on any social networking site (Facebook, Blog, Twitter etc.): Watch out for scammers; limit how much personal information that you share; be clear about what you want from the group.

• Share what you are learning with your medical provider. Many providers will welcome what you are learning, as they don't have the time to follow everything that happens on line.

Resources to check out:

• Health Central

• Shared Health Data: Design, Deliver, Better health with Your Own Information

• Patients Like Me: Includes 500+ conditions

• Society for Participatory Medicine The Society for Participatory Medicine is a 501(c)3 public charity devoted to promoting the concept of participatory medicine by and among patients, caregivers and their medical teams and to promote clinical transparency among patients and their physicians through the exchange of information, via conferences, as well through the distribution of correspondence and other written materials.

• e-Patients.Net Blog of the Society for Participatory Medicine

• Association of Cancer online Resources

• e-Patient Dave: A Voice of Patient Engagement

• Other on-line resources

Take a Break: Create Temporary Tattoos and Body Art

One of the favorite activities of summer camp was making temporary tattoos on one another. While we would buy henna and stencils, I was always on the look out for cheap body paints (left over from Halloween). Sometimes I’ll find them at the discount stores, like Dollar Stores. Also be on the look out for cosmetic grade glitter and jewels.

Since my family are major soccer fans, we watch a lot of European events and the face painting is amazing. From the look of it, they use a lot of stencils and face painting stamps (usually made of rubber with a foam backing). While you can use stencils you may already have-they should be very flexible- you can also download free ones from the following sites:

• Free face painting stencils

• Free Stencils from All-About-Stencils

Keep in mind, whether it’s for face painting or a tattoo, just because something is labeled non toxic doesn’t mean that it belongs on your skin. Some things you might try:

• Mix food coloring with body lotion-I used the Wilton food coloring dye and a little goes a long way. Makes very rich color. Apply with a cue tip. Comes off with soap and water. You can also just use the dye by itself.

• Liquid eyeliner comes in a variety of shades and makes very interesting body art.

• Eye and lipstick pencils are good ways to outline design. Fill in with various types of make up, including lipstick and eye shadow.

• Some food stains, such as beets and blueberries.

There re are such things as sterile surgical skin marking pens, which can be ordered on-line as well as semi permanent tattoo pens. There is even tattoo paper you can use in your printer.

How to Make a Temporary Tattoo using Eye Liner

Medical Jargon Translator

Several years ago, several friends and I went to visit a mutual friend who was very ill and heavily sedated. I had stepped out of the tiny room, to give some space for the other visitors, but went dashing back when one of the them was trying to sit the patient up and get her to drink water. My first reaction was to say “didn’t you see the sign on the door?” but I stopped myself. She very well could have, but she would have no way of knowing that the NPO sign meant “nothing by mouth.”

So to help you understand what a doctor or nurse is telling your, or if you want to just sound like a medical professional, try the following links:

MedTerms Medical Dictionary A- z List

Medical abbreviations of general interest

Medical Dictionary: This site also has a medical vocabulary tutorial.

Remember that there is no shame in not understanding what something means.

Take a Break: Stay Cool with a No Rush Day

With a heat wave sweeping most of the country, it’s time for a “No Rush Day.”

I grew up in Baltimore, MD, where temps were easily 90 or more most days in the summer, plus lots of humidity. Besides swimming, my favorite way to beat the heat was to lie on a lounge chair in the shade and read. I’d eat M & M’s when they were available, which left my hands stained with red dye number 2 or something probably just as nasty. However, the combination of sounds (cicada and the occasionally bird), smells and heat would lull me into a bit of a stupor that was quite pleasant.

The adults, who were not at work, would do the majority of the shopping and chores in the morning, leaving the afternoon for naps, reading in the shade or in front of a fan, or catching up on more sedentary tasks like paying bills. The heat of the day was spent out of the sun, with curtains drawn to keep the sun from shinning in the house.

In the cool of the evening, the neighbors were out on the porches and kids ruled the street until the streetlights came on. One of our neighbors rigged it up so they could watch TV on their porch. Once it was dark, we’d lie on our backs stargazing or we’d have a special game of “kick the can.”

I’ve rarely lived with an air conditioner in my home, even in Baltimore. In Vermont, the weather, in my view, has never been hot enough to merit even a consideration of one. My kids would disagree. There is something so nice about just not doing too much as a way to stay cool.

My idea of a perfect “no rush day,” is head to the beach, lake or pool where there is hopefully, a good breeze and cold water to jump in and out of. If that’s not an option, consider the following:

Make Ices and/or Popsicles: My Mom would make lemonade, pour it into a pan and stick it in the freezer, for us to enjoy in the evening. We would sneak in during the day and take a fork and “shave it.” We had never heard of granatas, but we knew that we liked putting our head in the freezer, and loved the pieces of shaved ice that resulted from the “raking.”

There are all sorts of inexpensive Popsicle molds on the market, including some you can pick up in the Dollar Store. Pour juice, tea, coffee or whatever flavor suits you and freeze. Ice cube trays work, as do the small paper bathroom cups.

For recipes and other idea check out 50 Amazing Homemade Popsicle Recipes and Ideas.

Drink Cucumber Water: Just cut up a cucumber and place in a large pitcher. Add water and ice. Very refreshing. You can also add lemon.

Skip the stove: Eat small meals that don’t involve cooking-salads, watermelon, and sandwiches or go out for a meal. Spicy foods are very popular in hot climates. Many swear that eating hot cools them down. Try a spicy salsa and chips and see how it works for you.

Use a fan to cool down: Even air condition after a while can feel hot. Adding a fan, to circulate the air, will make you feel cooler. Remember to turn it off if you aren’t in the room.

Spray yourself: Keep a spray bottle of water in the refrigerator. When you are particularly hot, say just coming in from outside, spray your face.

Catch a Matinee: In the heat of the day, chillin’ at the movies is a nice way to stay cool.

Cool your pulse points: Running your wrists under cold water, sticking your feet in the kiddies pool; and wrapping one of those Australian cooling ties around your neck are great ways to cool off.

Lie in a hammock and read a cool book: This maybe the time to read “Into Thin Air,” about the Mt. Everest expedition. “The Long Winter” by Laura Ingalls Wilder is a good read aloud with kids. If you are into snow sports, catch up on your ski magazines. Check out Cold Cases: Icy Books Offer Relief from the Heat.

Think cold: There are lots of movies out there with winter themes that can provide some chilly thoughts.