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
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