This past week, I watched Brene Brown’s presentation “The Power of Vulnerability” at the TED Conference. A social worker, while doing research on how people feel connected, Brown came across an interesting finding. So very quickly -- really about six weeks into this research -- I ran into this unnamed thing that absolutely unraveled connection in a way that I didn't understand or had never seen. And so I pulled back out of the research and thought, I need to figure out what this is. And it turned out to be shame. And shame is really easily understood as the fear of disconnection. Is there something about me that, if other people know it or see it, that I won't be worthy of connection. The things I can tell you about it: it's universal; we all have it. The only people who don't experience shame have no capacity for human empathy or connection.
When I heard her say this, I thought of the hugh amount of shame I have witnessed in people who are living with chronic and/or life threatening conditions and how destructive it is.
Before I go too far, I’d like to back up to my own childhood.
While I was labeled “dyslexic” with “learning problems, “ I prefer the term non-traditional learner. I absolutely could learn, not necessarily in the manner that the majority of my classmates did.
I was in the 2nd or 3rd grade and I remember my parents talking to me about my report card, while at the same time glaring over my head at my older brother. He had mostly A’s but had failed Deportment and Effort. My grades were the complete reverse of his. Patting me on the head, my parents assured me that I was just fine, “as long as you try and do your best.”
Just because I learned differently didn’t make me an idiot. I quickly realized that my best wasn’t very good. Needless to say, I felt ashamed.
As an adult, I hated it when people said “just do your best,” or “you gave it your best shot.” These phrases implied to me that while they may get an A in for Effort, they were almost assured to be falling short of the mark.
It took me until adulthood to see that my style of learning had some very unique gifts. Because I don’t think like most people, a real draw back in school, I make an excellent problem solver for the traditional thinker/learner. For years I have worked as a consultant to organizations. Since I don’t look at things the same way they do, it’s easier for me to figure out a different approach.
Several years ago, a friend of mind asked me how I could see solutions so easily. “I’m just wired that way,” I responded. What I didn’t realize as a young child is that my best was in fact more than good enough. What I was meant to do, was not the same as my brother or my classmates. My brother’s path led down the road to becoming a researcher/scientist in medicine. I too went into the medical field but from a whole different perspective. Both are needed. Both are of value. Both of us give it our best, and it is truly more than good enough.
Now back to the years working in AIDS. This was a diagnosis that carried with it tremendous stigma and judgment, particularly in the early years of the epidemic. A number of the men and women I worked with had limited self-esteem to begin with, which was compounded when they were diagnosed. Because of their shame, it was not uncommon for them to be reluctant to date, if they were single, or to be in abusive relationships.
Working with people with all sorts of diagnoses, I know that shame isn’t limited to a particular diagnosis. Some feel guilty because they contributed to their illness-e.g. a smoker who develops lung cancer. Others are ashamed about appearance-e.g. a person with a motion disorder who stumbles and shakes. Still others are upset with themselves about the impact their health condition is having on their family. Many are embarrased that their body is failing them.
At the same time I was watching people self destruct because they had so little regard for themselves, I watched the power house men and women who took on the Food and Drug Administration (FDA), formed AIDS service organizations and were willing to stand up and say, “I’m a person living with AIDS!” They were not AIDS victims or sufferers. They were people living with a disease, not being defined by it. These were amazing humans. Their energy was infectious and I stood in awe. They made mistakes, got pissed off, cried, stamped their feet, made eloquent speeches, fell in love, got divorced, got married, had kids, returned to college, joined committees, dropped off boards to start new ones, and proceeded to live life with tremendous vigor.
At one point, two HIV+ women on my board had dated the same guy who was a “neggie”(HIV negative). I told them they had wrecked this man for non-infected gals, as they were among the most engaging people you’d ever want to meet. They were clear they had no idea how much time they had, but while they were able to, they wanted to enjoy every minute of it. If you were in their orbit, they wanted you to experience their level of joy. After all, who wants to hang out with a “downer?” as they would say. They weren’t going to waste time on people that didn’t respect them, or devalued them because of their diagnosis.
This isn’t unique to AIDS, as I see it all the time in the people I work with. People who believe they have value, who seek out friendships, participate in support groups, are willing to be both givers and receivers (that’s last week’s post), and recognize nearly all of us will develop something,-and this is just their something- thrive.
Brene Brown writes on her website, Wholehearted living is about engaging in our lives from a place of worthiness. It means cultivating the courage, compassion, and connection to wake up in the morning and think, No matter what gets done and how much is left undone; I am enough.
It’s going to bed at night thinking, Yes, I am imperfect and vulnerable and sometimes afraid, but that doesn’t change the truth that I am also brave and worthy of love and belonging.
Do you let your condition define you? Are you ashamed of it? Do you isolate yourself from others because of it? If you are answering yes to one or more of these questions, there are things you can do.
While this blog has been designed to address many aspects of living with a chronic condition, check out Care of the Whole Person, which is a good summary sheet. I will be giving this handout its yearly update in March. Please let me know what you think should be added, changed, deleted.
The final “take home point” of this post is this. The next time someone says, “Do your best.” Remember that your best is more than good enough. As Brown would say, “I am enough.”
Saturday, January 29, 2011
Wednesday, January 26, 2011
Take a Break: Quilling (paper curling)
With Valentine’s Day just a few weeks away, the next several posts will focus on activities to enjoy and share.
Also known as paper curling or paper filigree, the origins of quilling are not known. It most likely started in China or Egypt shortly after the invention of paper. It’s a technique that’s been around for many centuries but came to the forefront in the 15th and 16th centuries, when European nuns used the torn edges from bibles and goose feathers to quill and decorate religious articles. The term “quilling” comes from the practice of wrapping paper around goose quilles. To learn more about the history, go to Paper Quilling.
The quilling tool is not very expensive and it will make it easier in the long run. However, to get started, and to see if you like it, use a pencil, knitting needle or thin crochet hook. I can remember “quilling” paper around a pencil, using a scrap of paper from an old test, in grade school, while I pretended to be listening to the teacher. Pre cut quilling paper is also available, but you can cut your own 1/8 or 1/4 inch strips. Most patterns give instructions on the length and size of paper you will need.
As with most craft projects, there are now all sorts of things on the market-quilling boards, special glues etc. However, the basics are simple, long strips of paper are wound around a tool, released, push into a desired shape, and then a tiny dab of glue is used to keep it from unraveling. Putting several of the coils together can form a flower, animal or anything you choose. You can even make letters using quilling techniques.
Quilling Instructions
An Introduction to Quilling Video
Paper Quilling Resources: Includes a variety of projects to try as well as instructions.
Quilled Valentines and Cards from Martha Stewart
Quilled Valentine Heart Pattern: Note that there are lots of other free designs at this blog.
Snowflake Quilling Video: As part of making the snowflake, good instructions on making heart shaped paper scrolls.
Also known as paper curling or paper filigree, the origins of quilling are not known. It most likely started in China or Egypt shortly after the invention of paper. It’s a technique that’s been around for many centuries but came to the forefront in the 15th and 16th centuries, when European nuns used the torn edges from bibles and goose feathers to quill and decorate religious articles. The term “quilling” comes from the practice of wrapping paper around goose quilles. To learn more about the history, go to Paper Quilling.
The quilling tool is not very expensive and it will make it easier in the long run. However, to get started, and to see if you like it, use a pencil, knitting needle or thin crochet hook. I can remember “quilling” paper around a pencil, using a scrap of paper from an old test, in grade school, while I pretended to be listening to the teacher. Pre cut quilling paper is also available, but you can cut your own 1/8 or 1/4 inch strips. Most patterns give instructions on the length and size of paper you will need.
As with most craft projects, there are now all sorts of things on the market-quilling boards, special glues etc. However, the basics are simple, long strips of paper are wound around a tool, released, push into a desired shape, and then a tiny dab of glue is used to keep it from unraveling. Putting several of the coils together can form a flower, animal or anything you choose. You can even make letters using quilling techniques.
Quilling Instructions
An Introduction to Quilling Video
Paper Quilling Resources: Includes a variety of projects to try as well as instructions.
Quilled Valentines and Cards from Martha Stewart
Quilled Valentine Heart Pattern: Note that there are lots of other free designs at this blog.
Snowflake Quilling Video: As part of making the snowflake, good instructions on making heart shaped paper scrolls.
Saturday, January 22, 2011
Balancing Giving and Receiving
You must be continually giving - and getting. You cannot hold on to your seed. You must sow it - and reap anew. Robert Collier
I’ve been trying to write a post on giving and receiving for over a year now. Like many, I was raised with the adage, “It is better to give then to receive,” but have found over the years this really isn’t such a good idea.
Whether a medical provider, caregiver, family member, friend or patient, if you are always giving and not allowing yourself to receive, you shouldn’t be surprised by feelings of despair, anger, resentment, frustration, being overwhelmed and experiencing physical symptoms of stress. It’s not surprising that the spouses of critically ill patients, end up with health issues of their own after long stretches of care giving. If all the energy goes out, there is nothing in reserve.
Focusing on a different definition of “well,” might be a useful reminder of the importance of balancing giving with receiving. If you depend on a well for your source of water, as I do, it must be monitored regularly. If too much water is drawn out, it can run dry and you’ll go thirsty. If there is too much pouring in, which can happen in the spring rains and/or snow melting, the water can become contaminated with bacteria. In short, you need a certain level of water and type for the well to function properly-a steady flow in both directions.
If you are sick, having a flare of a chronic illness, you may feel like you are asking a great deal of others. However, there is much you can offer those to help you maintain well-being:
• Let people know you are grateful for their time and help. Tell them when you see them. Send a card, e-mail, or phone them. Recently, a friend’s parent died. In her note, thanking me for the basket I had dropped off, she let me know how much she appreciated talking to me through the difficult times of her parent’s illness. The note was wonderful enough, but she bumped it up a notch by enclosing a gift card for gas.
• If you can afford to, things like gas cards (provided they drive), and gift certificates to stores and restaurants they use are always appreciated.
• Ask them how they are doing. One woman I advocated for would always ask how I was doing as well as my family. She was very attentive and in subsequent inquiries, her comments always reflected how well she listened.
• If they are taking you to and from medical appointments, pay for their gas, take them to lunch, or bring something that they may like e.g. fruit, flowers, cookies etc.
• If you have the energy and time, make them something special. It could be a craft item, food, a CD etc.
• Celebrate their interests. Whether it’s a birthday, the victory of their favorite sport’s team, or a child’s graduation, acknowledge it.
• Pick flowers from your garden. Share a plant or a plant clipping.
If you are the caregiver, medical provider, friend or family member, be open to receiving from those you are caring for. Just the other day, I mentioned to a provider how helpful she had been to me. Her immediate comment was a bit of embarrassment, followed by the acknowledgment that, “I’m not good at receiving compliments.”
Having felt that way myself, it’s taken me a while to learn that in order for the other person to be comfortable giving, I have to be a willing and receptive receiver. A simple response of “Thank you for letting me know that. I’m glad I can be of help to you,” not only acknowledges their “gift” of thanks has been received; it also lets them know you valued it. Basically, both of you walk away with a warm glow.
If I were going to promote an adage, it would be the Golden Rule “do unto others as you would have them do unto you.” In short, if you wish to receive, be a willing giver. If you wish to give, be a willing receiver.
I’ve been trying to write a post on giving and receiving for over a year now. Like many, I was raised with the adage, “It is better to give then to receive,” but have found over the years this really isn’t such a good idea.
Whether a medical provider, caregiver, family member, friend or patient, if you are always giving and not allowing yourself to receive, you shouldn’t be surprised by feelings of despair, anger, resentment, frustration, being overwhelmed and experiencing physical symptoms of stress. It’s not surprising that the spouses of critically ill patients, end up with health issues of their own after long stretches of care giving. If all the energy goes out, there is nothing in reserve.
Focusing on a different definition of “well,” might be a useful reminder of the importance of balancing giving with receiving. If you depend on a well for your source of water, as I do, it must be monitored regularly. If too much water is drawn out, it can run dry and you’ll go thirsty. If there is too much pouring in, which can happen in the spring rains and/or snow melting, the water can become contaminated with bacteria. In short, you need a certain level of water and type for the well to function properly-a steady flow in both directions.
If you are sick, having a flare of a chronic illness, you may feel like you are asking a great deal of others. However, there is much you can offer those to help you maintain well-being:
• Let people know you are grateful for their time and help. Tell them when you see them. Send a card, e-mail, or phone them. Recently, a friend’s parent died. In her note, thanking me for the basket I had dropped off, she let me know how much she appreciated talking to me through the difficult times of her parent’s illness. The note was wonderful enough, but she bumped it up a notch by enclosing a gift card for gas.
• If you can afford to, things like gas cards (provided they drive), and gift certificates to stores and restaurants they use are always appreciated.
• Ask them how they are doing. One woman I advocated for would always ask how I was doing as well as my family. She was very attentive and in subsequent inquiries, her comments always reflected how well she listened.
• If they are taking you to and from medical appointments, pay for their gas, take them to lunch, or bring something that they may like e.g. fruit, flowers, cookies etc.
• If you have the energy and time, make them something special. It could be a craft item, food, a CD etc.
• Celebrate their interests. Whether it’s a birthday, the victory of their favorite sport’s team, or a child’s graduation, acknowledge it.
• Pick flowers from your garden. Share a plant or a plant clipping.
If you are the caregiver, medical provider, friend or family member, be open to receiving from those you are caring for. Just the other day, I mentioned to a provider how helpful she had been to me. Her immediate comment was a bit of embarrassment, followed by the acknowledgment that, “I’m not good at receiving compliments.”
Having felt that way myself, it’s taken me a while to learn that in order for the other person to be comfortable giving, I have to be a willing and receptive receiver. A simple response of “Thank you for letting me know that. I’m glad I can be of help to you,” not only acknowledges their “gift” of thanks has been received; it also lets them know you valued it. Basically, both of you walk away with a warm glow.
If I were going to promote an adage, it would be the Golden Rule “do unto others as you would have them do unto you.” In short, if you wish to receive, be a willing giver. If you wish to give, be a willing receiver.
Wednesday, January 19, 2011
Take a Break: Find the Rainbow in Your Clouds
The poet, writer, teacher, speaker and all around Renaissance woman, Maya Angelou often sings during her presentations the lyrics from a 19th Century Slave Song. “When it looked like the sun wasn’t going to shine anymore, God put a rainbow in the clouds.” According to Angelou “God puts rainbows in the clouds so that each of us—in the dreariest and most dreaded moments—can see a possibility of hope.”
Sometimes the rainbow is a person that helps us when we are most in need. Other times it’s what appears to be a dreadful situation turning out to have very positive consequence. As I write this, I’m reminded of a friend that had gone through quite an ordeal helping to care for a dying parent. Not long after, her child received a chronic disease diagnosis. In talking with her, she noted that life had a way of working out and that she could already see some benefits to her child’s diagnosis. In short, in spite of what appeared to be a very dark cloud, she identified a rainbow.
Today’s “take a break” is not only about identifying the various rainbow(s) that have been or are part of your life, but to enjoy the various works of Maya Angelou. Watch videos of her; read her poetry or borrow one of her books from your local library.
Sometimes the rainbow is a person that helps us when we are most in need. Other times it’s what appears to be a dreadful situation turning out to have very positive consequence. As I write this, I’m reminded of a friend that had gone through quite an ordeal helping to care for a dying parent. Not long after, her child received a chronic disease diagnosis. In talking with her, she noted that life had a way of working out and that she could already see some benefits to her child’s diagnosis. In short, in spite of what appeared to be a very dark cloud, she identified a rainbow.
Today’s “take a break” is not only about identifying the various rainbow(s) that have been or are part of your life, but to enjoy the various works of Maya Angelou. Watch videos of her; read her poetry or borrow one of her books from your local library.
Sunday, January 16, 2011
Year of the Family Caregiver
The U.S. Administration on Aging has declared 2011 the "Year of the Family Caregiver” in honor of the10th Anniversary of the federal National Family Caregiver Support Program (NFCS). To recognize NFCSP’s decade of achievement and the family caregivers we serve, the U.S. Administration on Aging is collaborating with national caregiver organizations to sponsor a year of celebration. Join us! We are encouraging communities all across America to join in this celebration by:
. Hosting ceremonies and events to honor caregivers and caregiver supporters.
. Conducting information sessions about the role of family caregivers and the support NFCSP can provide.
. Engaging community leaders and policymakers to think about their vision for the next 10 years of support for family caregivers.
Use this website to download ready-made materials for planning and promoting your Year of the Family Caregiver events and help us celebrate the 10th anniversary of the NFCSP.
. Hosting ceremonies and events to honor caregivers and caregiver supporters.
. Conducting information sessions about the role of family caregivers and the support NFCSP can provide.
. Engaging community leaders and policymakers to think about their vision for the next 10 years of support for family caregivers.
Use this website to download ready-made materials for planning and promoting your Year of the Family Caregiver events and help us celebrate the 10th anniversary of the NFCSP.
Wednesday, January 12, 2011
Take a Break: Redecorate While You Un-decorate
By the time the 12th day of Christmas arrives (January 6), I’m ready for the tree to be out of the living room. However, I miss the lights and sparkles throughout the house, so this year I decided to do things a bit differently.
We have a new kitten, so to avoid broken ornaments, I made origami cranes and snowflakes for the tree, which looked beautiful with the lights. Less is definitely more. As it turned out, the cat was only marginally interested in the tree, and at that, only the lower branches.
As I removed the snowflakes from the tree, I taped them to thread and turned them into chains, which are now hanging in various parts of the house. I’m still trying to decide what to do with the cranes, but for now, I’m thrilled with how the snowflakes wave when you walk by them. It’s also snowing at the moment, so it seems even more special.
There are a variety of ways to re-decorate:
• Christmas tree lights look great on plants, inside or out.
• Get some new plants, or force spring bulbs, such as paper whites or daffodils.
• Add some winter touches, lots of holiday stuff is 50-75% off, so it’s a good time to pick up candles and other items that look good any time of the year.
• If you miss having a tree, find a small one and decorate it year round. January can be snow themed; February Mardi Gras and Valentines; March St. Patrick’s Day; and April Easter and spring. By May, there are all sorts of flowers to take the place of the tree, but if you need to continue here are some additional ideas: patriotic ornaments for Memorial Day, 4th of July and Labor Day; summer themes of seashells, sand pails, tiny boats, baseballs; and fall brings apples, back to school, ghosts, witches and other Halloween and harvest goodies. Before you know it, you’ll be decorating the tree with small holiday ornaments.
• Bring the outside in and decorate with pinecones, twigs, rocks, grasses or whatever else strikes your fancy.
• As you are cleaning up after the holidays, you may want to think about getting rid of stuff, or moving furniture. For more ideas in this area, try How to Tackle De-Decorating After the Holidays.
We have a new kitten, so to avoid broken ornaments, I made origami cranes and snowflakes for the tree, which looked beautiful with the lights. Less is definitely more. As it turned out, the cat was only marginally interested in the tree, and at that, only the lower branches.
As I removed the snowflakes from the tree, I taped them to thread and turned them into chains, which are now hanging in various parts of the house. I’m still trying to decide what to do with the cranes, but for now, I’m thrilled with how the snowflakes wave when you walk by them. It’s also snowing at the moment, so it seems even more special.
There are a variety of ways to re-decorate:
• Christmas tree lights look great on plants, inside or out.
• Get some new plants, or force spring bulbs, such as paper whites or daffodils.
• Add some winter touches, lots of holiday stuff is 50-75% off, so it’s a good time to pick up candles and other items that look good any time of the year.
• If you miss having a tree, find a small one and decorate it year round. January can be snow themed; February Mardi Gras and Valentines; March St. Patrick’s Day; and April Easter and spring. By May, there are all sorts of flowers to take the place of the tree, but if you need to continue here are some additional ideas: patriotic ornaments for Memorial Day, 4th of July and Labor Day; summer themes of seashells, sand pails, tiny boats, baseballs; and fall brings apples, back to school, ghosts, witches and other Halloween and harvest goodies. Before you know it, you’ll be decorating the tree with small holiday ornaments.
• Bring the outside in and decorate with pinecones, twigs, rocks, grasses or whatever else strikes your fancy.
• As you are cleaning up after the holidays, you may want to think about getting rid of stuff, or moving furniture. For more ideas in this area, try How to Tackle De-Decorating After the Holidays.
Sunday, January 9, 2011
Decision Making/Choices in Care
This post started out just focusing on the overuse of medical testing and treatment, but has morphed into something larger. I thought it maybe handy to have a place where a variety of the posts written about choices and decision-making would appear.
Several years ago, my son, an extremely fit athlete, said he had lumps in his abdomen. Away at school, I was not in a position to see him physically and told him to make an appointment with a doctor ASAP. The doctor ordered blood work. Even though the blood work was normal, he was sent for an MRI with contrasting dye at the local cancer center. Again results were normal. When he came home for summer break, he saw a gastroenterologist who accurately diagnosed him as being in such good shape, more so then most Americans, and what he was feeling were in fact his stomach muscles.
Not only did he go through unnecessary painful tests, there was a significant medical bill that insurance did not cover, as well as a great deal of mental anguish on his part and his parents. Was this necessary?
In July 2008 Consumer Reports Health’s wrote For many consumers, good health care means seeing as many specialists as possible. It may also mean undergoing rounds of tests and, if a serious illness is diagnosed, prolonged hospital stays and extensive treatment.
Though the idea that more health care is better seems to make sense, recent research has shown that none of the above necessarily helps you live better or longer. In fact, too much medical care might shorten your life.
Those findings grew out of the 2008 Dartmouth Atlas of Health Care study and almost three decades of research by John E. Wennberg, M.D., and colleagues at Dartmouth Medical School. Their study of 4,732,448 Medicare patients at thousands of hospitals in the U.S. from 2001 through 2005 found significant variations in the way that people with serious illnesses such as heart failure and cancer were treated during the last two years of their lives. Some regions used two or three times the medical and financial resources than others.
Other Dartmouth research has found that patients with serious conditions who are treated in regions that provide the most aggressive medical care—more tests and procedures, more specialists, and more days in the hospital—don't live longer or enjoy a better quality of life than those who receive more conservative treatment.
Patients treated most aggressively are at increased risk of infections and medical errors that come from uncoordinated care, such as doctors prescribing drugs that duplicate or interact with other drugs. They also tend to receive poorer care, spend a lot more money for co-payments, and are the least satisfied with their health care, the Dartmouth researchers found.
According to Dr. Alex Licerman, author of the blog “Happiness in this World: Reflections of a Buddhist Physician, we need to understand why doctors are over utilizing health care resources in the first place:
• Judgment varies in cases where the medical literature is vague or unhelpful. When faced with diagnostic dilemmas or diseases for which standard treatments haven’t been established, a variation in practice invariably occurs. If a primary care doctor suspects her patient has an ulcer, does she treat herself empirically or refer to a gastroenterologist for an endoscopy? If certain “red flag” symptoms are present, most doctors would refer. If not, some would and some wouldn’t depending on their training and the intangible exercise of judgment.
• Inexperience or poor judgment. More experienced physicians tend to rely on histories and physicals more than less experienced physicians and consequently order fewer and less expensive tests. Studies suggest primary care physicians spend less money on tests and procedures than their sub-specialty colleagues but obtain similar and sometimes even better outcomes.
• Fear of being sued. This is especially common in Emergency Room settings, but extends to almost every area of medicine.
• Patients tend to demand more testing rather than less. As noted above. And physicians often have difficulty refusing patient requests for many reasons (eg, wanting to please them, fear of missing a diagnosis and being sued, etc).
• In many settings, over utilization makes doctors more money. There exists no reliable incentive for doctors to limit their spending unless their pay is capitated or they’re receiving a straight salary.
So if we understand what role the medical provider plays in over testing and treating, what’s the consumer’s role? Being informed and asking questions are critical to helping in making decisions and choices.
When it comes to testing, talk about the following with your provider:
• What will the test cost and will my insurance cover it?
• What types of information will test results provide?
• Are there cheaper alternatives to this test?
• How will the information the test provides impact treatment?
• Would treatment be recommended regardless of test result?
When it comes to making treatment choices, be an active participant:
• Check out options, knowing risks and benefits of treatments as well as doing nothing.
• Learn about side effects and weigh benefits
• Discuss your specific situation with your provider. It’s great that medical science knows that three out of four people will have benefit from a treatment. However, the specifics of your condition, may modify that down to a one in ten statistic.
• Discuss treatment options with your provider as well as a close friend/family member.
• Check with your provider about using a “shared decision making” service at your health center, hospital or on-line.
Given the findings of his research, Dr. Wennberg has gone on to help found The Foundation for Informed Medical Decision Making, which helps consumers and providers in determining what type of testing and treatment may be best.
Other Healing Whole Posts on this topic
• You’re in Charge/Shared Decision Making: Includes a number of links to shared decision making.
• Choices/Decisions Part I
• When is it time to say enough?
As far as my initial question, was my son over tested, I think so. There are other cheaper and less traumatic testing that could have been to give similar information. However, I wasn’t part of the examination, so I have no idea how my son presented.
Several years ago, my son, an extremely fit athlete, said he had lumps in his abdomen. Away at school, I was not in a position to see him physically and told him to make an appointment with a doctor ASAP. The doctor ordered blood work. Even though the blood work was normal, he was sent for an MRI with contrasting dye at the local cancer center. Again results were normal. When he came home for summer break, he saw a gastroenterologist who accurately diagnosed him as being in such good shape, more so then most Americans, and what he was feeling were in fact his stomach muscles.
Not only did he go through unnecessary painful tests, there was a significant medical bill that insurance did not cover, as well as a great deal of mental anguish on his part and his parents. Was this necessary?
In July 2008 Consumer Reports Health’s wrote For many consumers, good health care means seeing as many specialists as possible. It may also mean undergoing rounds of tests and, if a serious illness is diagnosed, prolonged hospital stays and extensive treatment.
Though the idea that more health care is better seems to make sense, recent research has shown that none of the above necessarily helps you live better or longer. In fact, too much medical care might shorten your life.
Those findings grew out of the 2008 Dartmouth Atlas of Health Care study and almost three decades of research by John E. Wennberg, M.D., and colleagues at Dartmouth Medical School. Their study of 4,732,448 Medicare patients at thousands of hospitals in the U.S. from 2001 through 2005 found significant variations in the way that people with serious illnesses such as heart failure and cancer were treated during the last two years of their lives. Some regions used two or three times the medical and financial resources than others.
Other Dartmouth research has found that patients with serious conditions who are treated in regions that provide the most aggressive medical care—more tests and procedures, more specialists, and more days in the hospital—don't live longer or enjoy a better quality of life than those who receive more conservative treatment.
Patients treated most aggressively are at increased risk of infections and medical errors that come from uncoordinated care, such as doctors prescribing drugs that duplicate or interact with other drugs. They also tend to receive poorer care, spend a lot more money for co-payments, and are the least satisfied with their health care, the Dartmouth researchers found.
According to Dr. Alex Licerman, author of the blog “Happiness in this World: Reflections of a Buddhist Physician, we need to understand why doctors are over utilizing health care resources in the first place:
• Judgment varies in cases where the medical literature is vague or unhelpful. When faced with diagnostic dilemmas or diseases for which standard treatments haven’t been established, a variation in practice invariably occurs. If a primary care doctor suspects her patient has an ulcer, does she treat herself empirically or refer to a gastroenterologist for an endoscopy? If certain “red flag” symptoms are present, most doctors would refer. If not, some would and some wouldn’t depending on their training and the intangible exercise of judgment.
• Inexperience or poor judgment. More experienced physicians tend to rely on histories and physicals more than less experienced physicians and consequently order fewer and less expensive tests. Studies suggest primary care physicians spend less money on tests and procedures than their sub-specialty colleagues but obtain similar and sometimes even better outcomes.
• Fear of being sued. This is especially common in Emergency Room settings, but extends to almost every area of medicine.
• Patients tend to demand more testing rather than less. As noted above. And physicians often have difficulty refusing patient requests for many reasons (eg, wanting to please them, fear of missing a diagnosis and being sued, etc).
• In many settings, over utilization makes doctors more money. There exists no reliable incentive for doctors to limit their spending unless their pay is capitated or they’re receiving a straight salary.
So if we understand what role the medical provider plays in over testing and treating, what’s the consumer’s role? Being informed and asking questions are critical to helping in making decisions and choices.
When it comes to testing, talk about the following with your provider:
• What will the test cost and will my insurance cover it?
• What types of information will test results provide?
• Are there cheaper alternatives to this test?
• How will the information the test provides impact treatment?
• Would treatment be recommended regardless of test result?
When it comes to making treatment choices, be an active participant:
• Check out options, knowing risks and benefits of treatments as well as doing nothing.
• Learn about side effects and weigh benefits
• Discuss your specific situation with your provider. It’s great that medical science knows that three out of four people will have benefit from a treatment. However, the specifics of your condition, may modify that down to a one in ten statistic.
• Discuss treatment options with your provider as well as a close friend/family member.
• Check with your provider about using a “shared decision making” service at your health center, hospital or on-line.
Given the findings of his research, Dr. Wennberg has gone on to help found The Foundation for Informed Medical Decision Making, which helps consumers and providers in determining what type of testing and treatment may be best.
Other Healing Whole Posts on this topic
• You’re in Charge/Shared Decision Making: Includes a number of links to shared decision making.
• Choices/Decisions Part I
• When is it time to say enough?
As far as my initial question, was my son over tested, I think so. There are other cheaper and less traumatic testing that could have been to give similar information. However, I wasn’t part of the examination, so I have no idea how my son presented.
Wednesday, January 5, 2011
Take a Break: Reusing Last Year’s Calendar
In spite of all the gadgets on my computer, I still prefer to have a calendar hanging in my office. So what to do with the old one when the year changes?
You can file it away and use again in subsequent years. There are 14 possible calendar years, so not a lot of storage required. For example, 2011 uses the same calendar as 2005 or 1994. To find matching calendars for another year go to Same Year Calendars.
Maybe you weren’t all that fond of this past year’s calendar, or you’ve written all over it. Of course if the year just plain sucked you’d just as soon have the calendar vanish at the stroke of midnight on New Year’s Eve. Burning certainly works as does putting it through the paper shredder and using it for packing material. Some other ways to recycle your old calendar include:
• Donate them to a school, or nursing home.
• Save them as part of your child’s “memory box.”
• Take the calendar apart and frame pictures. Makes inexpensive art for your wall.
• Cut out interesting shapes and decoupage on picture frames, boxes, wood, mirrors, doors, lamp shades or whatever strikes your fancy.
• Depending on weight and size, turn them into interesting envelopes. You can always take a part an envelope and use it as a template or you can download one.
• If you scrap book, stash and use as needed.
• Make bookmarks, placemats, line cabinets or drawers, use as wrapping paper, make a mobile. The list can go on and on.
If you have wrapping paper you didn’t use or it’s only slightly used, and are having a “Martha Moment,” try Leftover Gift Wrap.
You can file it away and use again in subsequent years. There are 14 possible calendar years, so not a lot of storage required. For example, 2011 uses the same calendar as 2005 or 1994. To find matching calendars for another year go to Same Year Calendars.
Maybe you weren’t all that fond of this past year’s calendar, or you’ve written all over it. Of course if the year just plain sucked you’d just as soon have the calendar vanish at the stroke of midnight on New Year’s Eve. Burning certainly works as does putting it through the paper shredder and using it for packing material. Some other ways to recycle your old calendar include:
• Donate them to a school, or nursing home.
• Save them as part of your child’s “memory box.”
• Take the calendar apart and frame pictures. Makes inexpensive art for your wall.
• Cut out interesting shapes and decoupage on picture frames, boxes, wood, mirrors, doors, lamp shades or whatever strikes your fancy.
• Depending on weight and size, turn them into interesting envelopes. You can always take a part an envelope and use it as a template or you can download one.
• If you scrap book, stash and use as needed.
• Make bookmarks, placemats, line cabinets or drawers, use as wrapping paper, make a mobile. The list can go on and on.
If you have wrapping paper you didn’t use or it’s only slightly used, and are having a “Martha Moment,” try Leftover Gift Wrap.
Saturday, January 1, 2011
Aging in Place
Today, January 1, 2011, the first of the baby boomers turn 65. To assist them in planning for their future, caring for their parents, spouses, family and/or friends, the following post examines different ways people can age in place. If you know of other resources, information or have different ideas, either post them to the comment section below or e-mail them to margoc@tds.net
It is important to recognize that many seniors, and those living with chronic condition(s), also serve as caregiver for spouses, family members and even grandchildren. For resources and information on this topic, go to the Caregivers section of the blog.
AGING IN PLACE OPTIONS
There are a growing number of ways people can remain in their community, surrounded by the people and things that they treasure. Some approaches require a move initially, others do not. Below are the current ways seniors can age in place.
• Senior Community/ Senior Co-Housing: Cooperative-style housing community of seniors who share some expenses, skills and visions. Variations of this type of living arrangement include a group of people purchase a very large home and sub dividing it into apartments; building a number of homes in a cluster under the leadership of a corporation or builder. Generally, they do not provide formal services. If need becomes to great, the person can hire outside assistance, such as a personal care attendant, or will need to enter assisted living or nursing home care. Depending on location, this approach most likely will require a move.
Staffing: Generally none. Meetings are held regularly to determine need and to act accordingly.
Financials: Owners pay for their homes, some places do have rentals. On-going shared expenses. Screening process required for acceptance into community.
Examples: Burlington Co housing East Village (this is multi generational)
• Continuing Care Retirement Center: Provides resources and services from independent living through nursing home level of care. Residents pay for an apartment/condo. This approach requires a move.
Staffing: Very large paid staff from administration down to cafeteria workers, including an array of medical and ancillary personnel.
Financials: Fee structures very, but in general residents pay for their apartment (town house) plus a monthly fees. Additional fees are charged for additional services such as health care.
Examples: Wake Robin in Shelburne; The Lodge at Otter Creek Middlebury
• Naturally Occurring Retirement Community (NORC)/Villages: Coordinates seniors in a given geographical area. Members remain in their homes, apartments, or condos. More and more of these types of community-based programs are being developed and so there is a potential opportunity to help create one in the community where you now live. Services provided can include:
- One phone number to call for any service
- Coordinated billing
- Pre-screened service vendors –including home health, personal care attendants
-Transportation arrangements
- Computer training and support
- Volunteer services and opportunities
- Newsletter
- Check in service
- Exercise programs
- Access to social and cultural activities
- Household and home maintenance services
- Shopping assistance
- Information and referrals
Staffing: Paid staff, numbers depend on membership and area covered
Financials: Monthly dues or yearly membership. Charges for certain services.
Examples: SAIL-Support for Active Independent Lives-in Madison Wisconsin Beacon Hill Village Cambridge at Home
BASICS FOR AGING IN PLACE
Having the following will increase the chances of aging in place:
• Financial resources, willingness to hire help and having reliable options for personal care attendants and home health in the community
• Family and/or friends are nearby, can be of assistance and are willing to be advocates. The person in need has realistic expectations of their family and friends.
• Knows community resources and accesses them appropriately.
• Location and layout of the house can be modified to meet changing needs.
• Transportation, relatively easy access to public transportation and/or to friends and family that drive. Without that ability, shopping, socializing and other important activities quickly diminish quality of life.
• The designated caregiver(s) is willing to deal with significant changes in health status, particularly relating to dementia, mobility and the ability to perform basic activities of daily living, at home.
• Being proactive and putting things in place before a major issue arises, such as identifying people that could be hired for chore services, driving, personal care etc. A plan is in place before it’s needed.
• Affairs are in order-living will, will, health and financial proxy- so family and friends know exactly what the person wants so they can be carried out with minimal problems.
WAYS TO INCREASE CHANCES OF AGING IN PLACE
• USE COMMUNITY RESOURCES: Know what resources exist, what services they provide and how you can go about obtaining their services should you need it. Community groups that might be most useful include:
- Meals on wheels
- Home Health and hospice
- Council on Aging or Area Agency on Aging
- State Disability
- Transportation
- Senior Center
- Community Action Agencies
- Independent Living Center 713-520-0232 or www.ilru.org
- Eldercare Locator: Connects older Americans and their caregivers with sources of information on senior services. 1-800-677-1116 weekdays, 9:00 am-8:00 pm
- State and Local Health Department Call 202-371-9090 or check the front pages of your local phone book.
- A condition specific organization, such as the Diabetes Association, Cancer Society
- Department of Veterans Affairs
If you are not familiar with area resources, call 2-1-1 or go on-line to your state’s 211 website. They can help with food, housing, employment, health care, counseling and much more. Most sites include a Special Topics area where you can select Older Adults and People with Disabilities or Senior Citizens.
• TRANSPORTATION: This is a major stumbling block for many people as they age, particularly those in rural communities. Consequently, many seniors are reluctant to give up their license and drive much longer then they should. There are classes and resources (see below) to help people safely remain on the road.
If there is no public transportation, and driving is no longer an option, identify sources of mobility assistance. Those participating in CCRCs and NORCs generally have this built in to the program. There are programs that that provide both paid and volunteers to assist with shopping, going to medical appointments etc. Identify services before you are in need of them.
Resources
- Senior Drivers: Foundation for Traffic Safety: You can measure your driving skills/needs as well as learn where to go for education and training to keep you a safe and smart driver and how to plan for continued mobility.
- AARP Driver Safety Program
- Eldercare Locator 1-800-677-1116 weekdays, 9:00 am-8:00 pm
• CASE MANAGER: This person can help to coordinate the medical and social services you might need. There are a variety of places that offer this service including: social work department of hospital or clinic where you receive care; local aging organization; CCRC; NORC; or condition specific organization. You can also hire a professional geriatric care manager.
Resources
- National Association of Professional Geriatric Care Managers
- Eldercare Locator 1-800-677-1116 weekdays, 9:00 am-8:00 pm
• AN ADVOCATE: Having someone that knows what you want and can see that it happens is very important. As outlined in the Legal Matters section, it is important to find someone that you trust to serve in various legal positions. Further, a good “friend with a pen” can help advocate for you not only at medical appointments and hospitalizations but also in dealing with service personnel and other matters. It makes a difference if you can talk things over with a trusted friend or family member, particularly before you make important decisions.
• RELIABLE HELP: Like transportation, this is a deal breaker as to whether someone can remain at home. Before you need it, start planning for it. This means identifying potential caregivers, chore service providers, personal care attendants etc. Your local Council on Aging, senior center, CCRC, NORC or senior housing are all places to have a list of potential caregivers. NORCs generally offer a screening service as part of their program and can provide discounts for their preferred aids, housekeepers, personal care attendants etc.
You can hire caregivers privately or go through an agency. There are advantages and disadvantages to both. The primary advantage of hiring privately is that it will be cheaper. However, this makes you their employer, opening up a variety of issues. Further, if they become sick or change jobs, you don’t have a staff to fall back on.
Once reliable help is identified, it is key to start using them as soon as there is indication of need. Many elders wait too long and run into problems. Having the finances to pay for them is another issue. Since it is generally cheaper to keep someone in their home, many states have programs to help make this possible. Find out about these services from your local aging resources (senior center, Council on Aging etc.).
Resources
Hiring a Caregiver for In-Home Care
Hiring and Management of Personal Care Assistants for Individuals with Spinal Cord Injury: There is excellent information in this pamphlet, which is relevant to any condition.
What every caregiver needs to know about hiring in-home caregivers
Rewarding Work: Provides information on people available in your community who are available to do personal care.
Eldercare Locator: A public service of the U.S. Administration on Aging connecting you to services for older adults and their families. They can also be reached by phone 1-800-677-1116, M-F from 9 am-8 pm EST.
• A SAFE AND SECURE LIVING RESIDENCE: Living in a house, apartment or condo that is easy to access and move around in is essential. Senior living facilities have many features already built in. However, changing needs may mean making modifications. The majority of homes can be modified.
Resources
National Resource Center on Supportive Housing and Home Modifications: Click on their "Safety Checklist and Assessment Instrument."
Rebuilding Together: Home Safety Checklist
“Feeling Right at Home: The booklet is also available for free by calling 1-888-817-6331
State’s Independent Living Center 713-520-0232
• COMMUNICATION DEVICES (Lifeline): Use a personal emergency alert system, such as Lifeline or Medical Alert. Talk to your local hospital, phone company, senior center, people you know who have them, to find out the service that is going to be right for you. These devices can be worn as bracelets or around your neck. Some even come with GPS coordinates, so that if you are taking a walk and fall, emergency personnel will know exactly how to reach you. CCRCs generally have some aspect of this service built into their housing, e.g. help pull cords in the bathroom.
• ASSISTIVE DEVICES: Take full advantage of technology and products that help with activities of daily living. Whether it’s a cane, a “grabber” to help you reach high shelves or put on your socks, a high toilet seat or an easy to use cell phone, there are hundreds of devices on the market to help simplify life for you. There are a number of ways you can find out more about such items:
- Talk to a physical therapist or occupational therapist. Note-many times they will charge for such visits.
- Go to an area pharmacy that carries medical supplies. Pharmacies in or near a hospital offer a lot of devices and they have knowledgeable staff to help you. In general, they do not charge for their time.
- The exhibit areas of wellness fairs, condition specific organization meetings (e.g. Parkinson’s Disease Association), clinics and hospitals will often include a variety of nifty gadgets to make life easier. At a Parkinson’s Disease conference I attended, the “schwag” included; specially designed pens; devices to help open doors and jars; shoe horns with a long handle so you didn’t have to bend down; special pill caddies and more
Resources
Assistive Devices section of Medline Plus
• MAXIMIZE HEALTH AND WELL-BEING
This blog’s focus is on well-being, so be sure to look through past posts for additional tips, particularly the Care for the Whole Person Handout
- Social Connections: Stay involved with family and friends; participate in celebrations and enjoy the company of others on a daily bases. Encourage family and friends to stop by, try not to eat alone. Join a senior center if one exists in your community
- Recreation and Exercise: Key to aging well is staying fit and healthy as possible. Take a walk. Join a gym (many offer discounts to seniors); use a treadmill or elliptical trainer; practice yoga etc.
- Volunteer
- Learn something new
- Develop or use your spirituality and/or faith
- Take a Break
- Take medications as prescribed
- Keep medical appointments
- Get sufficient sleep and rest. Taking a nap in the afternoon can give you energy for activities later in the day.
- Eat a well balanced diet
Resources
National Institute of Health (NIH) Senior Health
Taking Charge of Your Health
• LEGAL MATTERS: Wills, power of attorney (both financial and medical), planning for your and your family's future in the event something should happen to you, are issues which should not be put off until a crisis situation occurs. Planning is best done when you can take your time and think things through clearly. Getting appropriate advice and input from family as well as a professional (i.e. lawyer, social worker) is also important. Outlined below are some of the items that you need to consider. Be advised that this is not legal advice. It is recommended that you consult with a lawyer as you make your plans.
- Will: legal document that describes what you want done with your possessions and other affairs after you have died.
- Living Will (Advanced Directives): gives directions about your medical care in case there comes a time when you are no longer able to communicate because of your illness. It allows you to express your wishes regarding the use of life support systems and the prolonging of life when critically ill. Once this document is completed, make sure that it is on file with your medical provider and hospital where you are most likely to receive care. Make sure your power of health attorney has a copy and members of your family who might be in a position to speak on your behalf if you are unable to do so.
- Durable Power of Health Attorney: document allows the person you name as your agent the authority to make any and all health care decisions for you when you are no longer capable of making them yourself.
- Power of Attorney: gives someone else the authority to make certain kinds of decisions and do other things for you, such as use money from a bank account, pay bills if you are unable to do so, and collect public assistance. Be aware that once this document is signed, the agent named has immediate access to all financial information.
- Legal guardian (who would care for a child or other dependent adult if you were unable to do so).
Most states have some form of legal aid, including senior legal aid. Check with 211 and/or your local office on aging.
FINANCIAL MATTERS: A number of older Americans are experiencing a financial pinch they hadn’t planned on. The current economic situation has devalued savings and investments to the point that many seniors will continue to work, even if part time, well into their 70s and beyond. Some have experience a variety of health or other issues that have reduced savings and available income. Regardless of the reason, a higher percentage of older Americans are living below the poverty level.
There are resources to help. A good case manager can help identify financial resources should you need them. The best strategy is to know your community resources and use them. Senior center, Council on Aging, community action agencies, local clinic and/or hospital where you are going for care are all places to learn more about what financial assistance might be available to you.
Experts say elder financial abuse will be the "Crime of the 21st Century" as the growing senior population becomes a target. Regrettably, many seniors are victimized by their own relatives or caregivers—people they generally trust.
Financial exploitation takes many forms. Warning signs include:
• Obtaining unauthorized access to an elder’s Social Security checks, pension payments, checking or savings account, credit card or ATM; identity theft
• Withholding portions of checks cashed for an elder
• Charging an elder excessive rent or unreasonable fees for basic care (e.g., transportation, food, or medicine)
• Scams (e.g., bogus sweepstakes, lotteries) that use deception, scare tactics, or exaggerated claims to get money from elders
• “Conning” by con artists who make their living preying on others and "befriend" elders
• Calls from telemarketers selling worthless, over priced, or nonexistent products
• Unfair or misleading home equity agreements that cause elders to lose their homes
• Unscrupulous home repair contractors
• Inappropriate financial products and services
• Fraudulent lifelong care offers in exchange for money or property
• Use an elder’s property or possessions without permission
• Forging an elder’s signature
• Coercing an elder to sign a deed, will, or power of attorney
• Pressuring an elder to give a "gift"
• Claiming to have found money and offering to split it with an elder if he or she first pays some amount as a sign of good faith
• Convincing an elder his or her child has been injured or is in jail and needs money
Elder Financial Protection Network
Resources
Senior Community Service Employment Program: This federal program assists seniors who are looking for work or are entering the workplace for the fist time.
Government Benefits, Grants and Financial Aid
Tax Counseling for the Elderly
US Department of Housing and Urban Development Information for Seniors (includes information on reverse mortgages)
Elder Financial Protection Network
BE AWARE OF FRAUD: Older people, and those with chronic/life threatening conditions are often the target of fraud. There are well-seasoned criminals intent on taking people’s life savings. Whether it’s health care treatments, investments, Medicare or even real estate, keep in mind the following:
- Fraud seldom looks outlandish
- Be wary of anecdotes and testimonials
- “Get rich quick” are scams
- If it sounds to good to be true, it probably is
- Be very wary of telemarketers
Protect Yourself: Take steps to protect yourself from financial exploitation and abuse:
• Plan ahead to protect your assets and to ensure your wishes are followed. Talk to someone at your financial institution, an attorney, or financial advisor about the best options for you.
• Never give personal information to anyone who phones you.
• Never pay a fee or taxes to collect sweepstakes or lottery "winnings."
• Never rush into a financial decision. Ask for details in writing and get a second opinion.
• Consult with a financial advisor or attorney before signing any document you don’t understand.
• Get to know your banker and build a relationship with the people who handle your finances. They can look out for any suspicious activity related to your account.
• Check references and credentials before hiring anyone. Don’t allow workers to have access to information about your finances.
• Pay with checks and credit cards instead of cash to keep a paper trail.
• Feel free to say "no." After all, it’s your money.
• You have the right not to be threatened or intimidated. If you think someone close to you is trying to take control of your finances, call your local Adult Protective Services.
Exploiters and abusers often are very skilled. They can be charming and forceful in their effort to convince you to give up control of your finances. Don’t be fooled. Trust your instincts. If something doesn’t feel right, it may not be right. If it sounds too good to be true, it probably is. Elder Financial Protection Network
Resources
Fighting Fraud Against Older Consumers
They Can’t Hang Up: Five Steps to Help Seniors Targeted by Telemarketing Fraud
Telemarketing Frauds Tips from the National Consumer’s League’s National Fraud Information Center
National Fraud Information Center
RESOURCES FOR AGING IN PLACE
Age in Place Council Check website for local chapters
Aging in Place Initiative
Naturally Occurring Retirement Community: Aging in Place-Provides excellent resource information about the various aspects of aging in place.
Aging in Place Technical Assistance Guide by Partners for Livable Communities
It is important to recognize that many seniors, and those living with chronic condition(s), also serve as caregiver for spouses, family members and even grandchildren. For resources and information on this topic, go to the Caregivers section of the blog.
AGING IN PLACE OPTIONS
There are a growing number of ways people can remain in their community, surrounded by the people and things that they treasure. Some approaches require a move initially, others do not. Below are the current ways seniors can age in place.
• Senior Community/ Senior Co-Housing: Cooperative-style housing community of seniors who share some expenses, skills and visions. Variations of this type of living arrangement include a group of people purchase a very large home and sub dividing it into apartments; building a number of homes in a cluster under the leadership of a corporation or builder. Generally, they do not provide formal services. If need becomes to great, the person can hire outside assistance, such as a personal care attendant, or will need to enter assisted living or nursing home care. Depending on location, this approach most likely will require a move.
Staffing: Generally none. Meetings are held regularly to determine need and to act accordingly.
Financials: Owners pay for their homes, some places do have rentals. On-going shared expenses. Screening process required for acceptance into community.
Examples: Burlington Co housing East Village (this is multi generational)
• Continuing Care Retirement Center: Provides resources and services from independent living through nursing home level of care. Residents pay for an apartment/condo. This approach requires a move.
Staffing: Very large paid staff from administration down to cafeteria workers, including an array of medical and ancillary personnel.
Financials: Fee structures very, but in general residents pay for their apartment (town house) plus a monthly fees. Additional fees are charged for additional services such as health care.
Examples: Wake Robin in Shelburne; The Lodge at Otter Creek Middlebury
• Naturally Occurring Retirement Community (NORC)/Villages: Coordinates seniors in a given geographical area. Members remain in their homes, apartments, or condos. More and more of these types of community-based programs are being developed and so there is a potential opportunity to help create one in the community where you now live. Services provided can include:
- One phone number to call for any service
- Coordinated billing
- Pre-screened service vendors –including home health, personal care attendants
-Transportation arrangements
- Computer training and support
- Volunteer services and opportunities
- Newsletter
- Check in service
- Exercise programs
- Access to social and cultural activities
- Household and home maintenance services
- Shopping assistance
- Information and referrals
Staffing: Paid staff, numbers depend on membership and area covered
Financials: Monthly dues or yearly membership. Charges for certain services.
Examples: SAIL-Support for Active Independent Lives-in Madison Wisconsin Beacon Hill Village Cambridge at Home
BASICS FOR AGING IN PLACE
Having the following will increase the chances of aging in place:
• Financial resources, willingness to hire help and having reliable options for personal care attendants and home health in the community
• Family and/or friends are nearby, can be of assistance and are willing to be advocates. The person in need has realistic expectations of their family and friends.
• Knows community resources and accesses them appropriately.
• Location and layout of the house can be modified to meet changing needs.
• Transportation, relatively easy access to public transportation and/or to friends and family that drive. Without that ability, shopping, socializing and other important activities quickly diminish quality of life.
• The designated caregiver(s) is willing to deal with significant changes in health status, particularly relating to dementia, mobility and the ability to perform basic activities of daily living, at home.
• Being proactive and putting things in place before a major issue arises, such as identifying people that could be hired for chore services, driving, personal care etc. A plan is in place before it’s needed.
• Affairs are in order-living will, will, health and financial proxy- so family and friends know exactly what the person wants so they can be carried out with minimal problems.
WAYS TO INCREASE CHANCES OF AGING IN PLACE
• USE COMMUNITY RESOURCES: Know what resources exist, what services they provide and how you can go about obtaining their services should you need it. Community groups that might be most useful include:
- Meals on wheels
- Home Health and hospice
- Council on Aging or Area Agency on Aging
- State Disability
- Transportation
- Senior Center
- Community Action Agencies
- Independent Living Center 713-520-0232 or www.ilru.org
- Eldercare Locator: Connects older Americans and their caregivers with sources of information on senior services. 1-800-677-1116 weekdays, 9:00 am-8:00 pm
- State and Local Health Department Call 202-371-9090 or check the front pages of your local phone book.
- A condition specific organization, such as the Diabetes Association, Cancer Society
- Department of Veterans Affairs
If you are not familiar with area resources, call 2-1-1 or go on-line to your state’s 211 website. They can help with food, housing, employment, health care, counseling and much more. Most sites include a Special Topics area where you can select Older Adults and People with Disabilities or Senior Citizens.
• TRANSPORTATION: This is a major stumbling block for many people as they age, particularly those in rural communities. Consequently, many seniors are reluctant to give up their license and drive much longer then they should. There are classes and resources (see below) to help people safely remain on the road.
If there is no public transportation, and driving is no longer an option, identify sources of mobility assistance. Those participating in CCRCs and NORCs generally have this built in to the program. There are programs that that provide both paid and volunteers to assist with shopping, going to medical appointments etc. Identify services before you are in need of them.
Resources
- Senior Drivers: Foundation for Traffic Safety: You can measure your driving skills/needs as well as learn where to go for education and training to keep you a safe and smart driver and how to plan for continued mobility.
- AARP Driver Safety Program
- Eldercare Locator 1-800-677-1116 weekdays, 9:00 am-8:00 pm
• CASE MANAGER: This person can help to coordinate the medical and social services you might need. There are a variety of places that offer this service including: social work department of hospital or clinic where you receive care; local aging organization; CCRC; NORC; or condition specific organization. You can also hire a professional geriatric care manager.
Resources
- National Association of Professional Geriatric Care Managers
- Eldercare Locator 1-800-677-1116 weekdays, 9:00 am-8:00 pm
• AN ADVOCATE: Having someone that knows what you want and can see that it happens is very important. As outlined in the Legal Matters section, it is important to find someone that you trust to serve in various legal positions. Further, a good “friend with a pen” can help advocate for you not only at medical appointments and hospitalizations but also in dealing with service personnel and other matters. It makes a difference if you can talk things over with a trusted friend or family member, particularly before you make important decisions.
• RELIABLE HELP: Like transportation, this is a deal breaker as to whether someone can remain at home. Before you need it, start planning for it. This means identifying potential caregivers, chore service providers, personal care attendants etc. Your local Council on Aging, senior center, CCRC, NORC or senior housing are all places to have a list of potential caregivers. NORCs generally offer a screening service as part of their program and can provide discounts for their preferred aids, housekeepers, personal care attendants etc.
You can hire caregivers privately or go through an agency. There are advantages and disadvantages to both. The primary advantage of hiring privately is that it will be cheaper. However, this makes you their employer, opening up a variety of issues. Further, if they become sick or change jobs, you don’t have a staff to fall back on.
Once reliable help is identified, it is key to start using them as soon as there is indication of need. Many elders wait too long and run into problems. Having the finances to pay for them is another issue. Since it is generally cheaper to keep someone in their home, many states have programs to help make this possible. Find out about these services from your local aging resources (senior center, Council on Aging etc.).
Resources
Hiring a Caregiver for In-Home Care
Hiring and Management of Personal Care Assistants for Individuals with Spinal Cord Injury: There is excellent information in this pamphlet, which is relevant to any condition.
What every caregiver needs to know about hiring in-home caregivers
Rewarding Work: Provides information on people available in your community who are available to do personal care.
Eldercare Locator: A public service of the U.S. Administration on Aging connecting you to services for older adults and their families. They can also be reached by phone 1-800-677-1116, M-F from 9 am-8 pm EST.
• A SAFE AND SECURE LIVING RESIDENCE: Living in a house, apartment or condo that is easy to access and move around in is essential. Senior living facilities have many features already built in. However, changing needs may mean making modifications. The majority of homes can be modified.
Resources
National Resource Center on Supportive Housing and Home Modifications: Click on their "Safety Checklist and Assessment Instrument."
Rebuilding Together: Home Safety Checklist
“Feeling Right at Home: The booklet is also available for free by calling 1-888-817-6331
State’s Independent Living Center 713-520-0232
• COMMUNICATION DEVICES (Lifeline): Use a personal emergency alert system, such as Lifeline or Medical Alert. Talk to your local hospital, phone company, senior center, people you know who have them, to find out the service that is going to be right for you. These devices can be worn as bracelets or around your neck. Some even come with GPS coordinates, so that if you are taking a walk and fall, emergency personnel will know exactly how to reach you. CCRCs generally have some aspect of this service built into their housing, e.g. help pull cords in the bathroom.
• ASSISTIVE DEVICES: Take full advantage of technology and products that help with activities of daily living. Whether it’s a cane, a “grabber” to help you reach high shelves or put on your socks, a high toilet seat or an easy to use cell phone, there are hundreds of devices on the market to help simplify life for you. There are a number of ways you can find out more about such items:
- Talk to a physical therapist or occupational therapist. Note-many times they will charge for such visits.
- Go to an area pharmacy that carries medical supplies. Pharmacies in or near a hospital offer a lot of devices and they have knowledgeable staff to help you. In general, they do not charge for their time.
- The exhibit areas of wellness fairs, condition specific organization meetings (e.g. Parkinson’s Disease Association), clinics and hospitals will often include a variety of nifty gadgets to make life easier. At a Parkinson’s Disease conference I attended, the “schwag” included; specially designed pens; devices to help open doors and jars; shoe horns with a long handle so you didn’t have to bend down; special pill caddies and more
Resources
Assistive Devices section of Medline Plus
• MAXIMIZE HEALTH AND WELL-BEING
This blog’s focus is on well-being, so be sure to look through past posts for additional tips, particularly the Care for the Whole Person Handout
- Social Connections: Stay involved with family and friends; participate in celebrations and enjoy the company of others on a daily bases. Encourage family and friends to stop by, try not to eat alone. Join a senior center if one exists in your community
- Recreation and Exercise: Key to aging well is staying fit and healthy as possible. Take a walk. Join a gym (many offer discounts to seniors); use a treadmill or elliptical trainer; practice yoga etc.
- Volunteer
- Learn something new
- Develop or use your spirituality and/or faith
- Take a Break
- Take medications as prescribed
- Keep medical appointments
- Get sufficient sleep and rest. Taking a nap in the afternoon can give you energy for activities later in the day.
- Eat a well balanced diet
Resources
National Institute of Health (NIH) Senior Health
Taking Charge of Your Health
• LEGAL MATTERS: Wills, power of attorney (both financial and medical), planning for your and your family's future in the event something should happen to you, are issues which should not be put off until a crisis situation occurs. Planning is best done when you can take your time and think things through clearly. Getting appropriate advice and input from family as well as a professional (i.e. lawyer, social worker) is also important. Outlined below are some of the items that you need to consider. Be advised that this is not legal advice. It is recommended that you consult with a lawyer as you make your plans.
- Will: legal document that describes what you want done with your possessions and other affairs after you have died.
- Living Will (Advanced Directives): gives directions about your medical care in case there comes a time when you are no longer able to communicate because of your illness. It allows you to express your wishes regarding the use of life support systems and the prolonging of life when critically ill. Once this document is completed, make sure that it is on file with your medical provider and hospital where you are most likely to receive care. Make sure your power of health attorney has a copy and members of your family who might be in a position to speak on your behalf if you are unable to do so.
- Durable Power of Health Attorney: document allows the person you name as your agent the authority to make any and all health care decisions for you when you are no longer capable of making them yourself.
- Power of Attorney: gives someone else the authority to make certain kinds of decisions and do other things for you, such as use money from a bank account, pay bills if you are unable to do so, and collect public assistance. Be aware that once this document is signed, the agent named has immediate access to all financial information.
- Legal guardian (who would care for a child or other dependent adult if you were unable to do so).
Most states have some form of legal aid, including senior legal aid. Check with 211 and/or your local office on aging.
FINANCIAL MATTERS: A number of older Americans are experiencing a financial pinch they hadn’t planned on. The current economic situation has devalued savings and investments to the point that many seniors will continue to work, even if part time, well into their 70s and beyond. Some have experience a variety of health or other issues that have reduced savings and available income. Regardless of the reason, a higher percentage of older Americans are living below the poverty level.
There are resources to help. A good case manager can help identify financial resources should you need them. The best strategy is to know your community resources and use them. Senior center, Council on Aging, community action agencies, local clinic and/or hospital where you are going for care are all places to learn more about what financial assistance might be available to you.
Experts say elder financial abuse will be the "Crime of the 21st Century" as the growing senior population becomes a target. Regrettably, many seniors are victimized by their own relatives or caregivers—people they generally trust.
Financial exploitation takes many forms. Warning signs include:
• Obtaining unauthorized access to an elder’s Social Security checks, pension payments, checking or savings account, credit card or ATM; identity theft
• Withholding portions of checks cashed for an elder
• Charging an elder excessive rent or unreasonable fees for basic care (e.g., transportation, food, or medicine)
• Scams (e.g., bogus sweepstakes, lotteries) that use deception, scare tactics, or exaggerated claims to get money from elders
• “Conning” by con artists who make their living preying on others and "befriend" elders
• Calls from telemarketers selling worthless, over priced, or nonexistent products
• Unfair or misleading home equity agreements that cause elders to lose their homes
• Unscrupulous home repair contractors
• Inappropriate financial products and services
• Fraudulent lifelong care offers in exchange for money or property
• Use an elder’s property or possessions without permission
• Forging an elder’s signature
• Coercing an elder to sign a deed, will, or power of attorney
• Pressuring an elder to give a "gift"
• Claiming to have found money and offering to split it with an elder if he or she first pays some amount as a sign of good faith
• Convincing an elder his or her child has been injured or is in jail and needs money
Elder Financial Protection Network
Resources
Senior Community Service Employment Program: This federal program assists seniors who are looking for work or are entering the workplace for the fist time.
Government Benefits, Grants and Financial Aid
Tax Counseling for the Elderly
US Department of Housing and Urban Development Information for Seniors (includes information on reverse mortgages)
Elder Financial Protection Network
BE AWARE OF FRAUD: Older people, and those with chronic/life threatening conditions are often the target of fraud. There are well-seasoned criminals intent on taking people’s life savings. Whether it’s health care treatments, investments, Medicare or even real estate, keep in mind the following:
- Fraud seldom looks outlandish
- Be wary of anecdotes and testimonials
- “Get rich quick” are scams
- If it sounds to good to be true, it probably is
- Be very wary of telemarketers
Protect Yourself: Take steps to protect yourself from financial exploitation and abuse:
• Plan ahead to protect your assets and to ensure your wishes are followed. Talk to someone at your financial institution, an attorney, or financial advisor about the best options for you.
• Never give personal information to anyone who phones you.
• Never pay a fee or taxes to collect sweepstakes or lottery "winnings."
• Never rush into a financial decision. Ask for details in writing and get a second opinion.
• Consult with a financial advisor or attorney before signing any document you don’t understand.
• Get to know your banker and build a relationship with the people who handle your finances. They can look out for any suspicious activity related to your account.
• Check references and credentials before hiring anyone. Don’t allow workers to have access to information about your finances.
• Pay with checks and credit cards instead of cash to keep a paper trail.
• Feel free to say "no." After all, it’s your money.
• You have the right not to be threatened or intimidated. If you think someone close to you is trying to take control of your finances, call your local Adult Protective Services.
Exploiters and abusers often are very skilled. They can be charming and forceful in their effort to convince you to give up control of your finances. Don’t be fooled. Trust your instincts. If something doesn’t feel right, it may not be right. If it sounds too good to be true, it probably is. Elder Financial Protection Network
Resources
Fighting Fraud Against Older Consumers
They Can’t Hang Up: Five Steps to Help Seniors Targeted by Telemarketing Fraud
Telemarketing Frauds Tips from the National Consumer’s League’s National Fraud Information Center
National Fraud Information Center
RESOURCES FOR AGING IN PLACE
Age in Place Council Check website for local chapters
Aging in Place Initiative
Naturally Occurring Retirement Community: Aging in Place-Provides excellent resource information about the various aspects of aging in place.
Aging in Place Technical Assistance Guide by Partners for Livable Communities
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