Saturday, November 29, 2014

When You’re Responsible for Someone Who has been Injured or Diagnosed

This is preparedness information we all need to know but it’s generally not readily available.  If you’re in the midst of a crisis, you probably wont be reading this post, but hopefully a good friend might be. If you’re a provider, use this to help the family know what they can and should be doing.

For  those who are making decisions and organizing care for the individual who is injured or ill, e.g. spouse, parent, adult child, sibling, best friend etc. outlined below are things to be done in the first week to ten days. While this may seem like an arbitrary amount of time, this is actually how long it takes the brain to adjust to shock. At the end of this time period, most have adjusted to the “new normal.”

Think of this time frame as your “window of opportunity.” Friends, family, employers and others in your community will be most concerned and want to help in whatever way they can.  You don’t want to be pushing them away, but rather channel their ideas and offers of help into venues where they will be available in the weeks and possibly months ahead. If too much time is taken in organizing help, it evaporates and for many, the real need is not in the crisis phase but in the months to come.

What to do  

• Take a deep breathe and recognize you can only do but so much.

• Organize Help and Delegate from day one: The quickest way to do this is by asking a trusted friend and/or family member to set up a free Lotsa Helping Hands website for you.  This allows you to keep people informed, while being clear about what your needs are and what they can do to help. The more you use the site, the less phone calls, texts, e-mails etc. you’ll have to deal with. There are other websites that do aspects of this, but Lotsa Helping Hands is by far the most comprehensive yet still guards privacy..

• Be there for the person who is ill or injured, particularly if they are hospitalized: Don’t leave a patient alone in a hospital if you can help it. The following quote is from a survey I did in 2009, where I asked providers and consumers what they needed when hospitalized, “From my experience as an inpatient as well as the daughter of one, there must be someone at the bedside to advocate for the patient.  If it can't be 24/7, then perhaps shifts can be taken by people who care.  I don't know of any other way, given the situation at most hospitals or perhaps all of them. ..I've literally saved the person's life, because no one was around to notice there was an abrupt change…” Many hospitals make provisions for family members to stay overnight in the patient’s room when possible. Because of staffing, hospital personnel welcome the advocate as it’s another set of eyes and ears that can be in the room when they can’t. Be their advocate by:
-       Keeping a bedside log of tests, treatments, and consultations
-       When they are unable to communicate, be specific about their needs. Don’t hesitate to ask for someone in charge if you feel needs aren’t being met.
-       Make sure caregivers wash their hands
-       Be insistent if you or the patient is unhappy with the care they are receiving or don’t understand something
-       Connect with the hospital’s discharge (disposition) planner as soon as possible as well as the social worker. The better the planning that’s done before the patient is discharged the less likely they’ll need to be readmitted.
-       If there are difficult decisions to be made, ask if the hospital has a “shared decision” department. If not, check out the following resources: Foundation for Informed Medical Decision Making and “Hard Choices for Loving People.” 

Before they are discharged:
-       Determine what they will need when they’re at home.
-       Know what their insurance will cover
-       Identify gaps and work with the discharge planner/social worker to identify community resources as well as the volunteers on your Lotsa Helping Hands website.
-       Understand the discharge plan and don’t leave the hospital without a copy of it.

• Learn as much as you can, as quickly as you can about the person’s condition: If you don’t have time to do it, assign this task to a trusted family member or friend. If you are camped out at the hospital, and don’t have a computer or tablet, most hospitals will have one for patient/family use. A place to start is the local chapter of a condition specific organization (e.g. the state chapter of the Brain Injury Association). Some of these organizations have peer advocates that will come to the hospital and can be invaluable. Many hospitals have resource centers you can use. Other places to check for information include: Medline Plus or  Mayo Clinic Diseases and Conditions. Note that the Medline Plus website provides a list of national organizations associated with a particular condition. 

• Ask questions about the person’s care including whether the hospital they’re in is the best place for them. Even if this is your local hospital where your family has always been cared for, know that it might not be right in the current situation. No hospital is the best in everything. Hospitals that see a lot of a particular condition are going to be more successful then a facility that sees one every now and again. This is particularly true for patients who have spinal cord, traumatic brain or orthopedic injuries as well as oncology. Definitely recommend being an e-patient, as websites like Patients Like Me can quickly provide you will real information about people dealing with similar situations. In addition, some medical providers will recommend sites.

• Dealing with First Things First: There are a lot of things competing for your time and attention. It can be difficult to know which ones to deal with first. Simplify it by asking yourself the question: “Is someone’s health or safety jeopardized if I don’t act promptly?” If it can be put off tomorrow, it can wait.

Those with children, particularly young ones, can find that no place seems right. If you’re at the hospital you think you should be home, when your home with the kids, your preoccupied. This is where volunteers can help to fill in since you can’t be in two places at once. 

• Other posts that will be relevant: I’ve been writing this blog since 2009 and there are many different topics that have been covered. Use the search feature, which is on the right hand side bar, to help you identify topics that are of concern to you. Be sure to scroll through the list of “resource” posts.

Wednesday, November 26, 2014

Take a Break with Baba Yaga

As a child, my favorite fairy tale featured Baba Yaga (ya-ga), the Russian witch with iron teeth. She has been described as the Arch-Crone, the Goddess of Wisdom and Death, the Bone Mother. Wild and untamable, she is a nature spirit bringing wisdom and death of ego, and through death, rebirth.

While she has scared many a Russian child, I loved her. She was my first role model as to what a woman could be-wise, strong, helpful, powerful, magical and best of all, she didn’t give a damn how others viewed her. She wasn’t all good, but certainly wasn’t the evil witch of many other fairy tales. If your path crossed hers, it would change, often for the better, even though it may not seem like that way initially.

She had a cat that was quite a character and it’s probably why at my first opportunity I adopted one and it isn’t home unless there is a cat lying about. I also liked the fact that she lived in a house that rested on chicken legs. Best of all, she traveled in a mortar and pestle.

My Russian and Slavic friends think I’m a bit nuts for liking Baba Yaga but. I’m finding my childhood heroine to still be an inspiration and it turns out she has the same effect on other women. In France, a group of Baba Yaga’s, women in their 60s and up, have started a house where they can do as they please, support one another and age in place. 

Since this December the “take a breaks” will all be about Russian Christmas, I figured the day before Thanksgiving, particularly a snowy one here in Vermont,  is a good day to give thanks and enjoy some of my favorite stories of childhood.

• Learn about Baba Yaga


Saturday, November 22, 2014

When You Can’t Be With Them: Messages that make a difference

This post is dedicated to and inspired by my friend Cheryl.

It’s not uncommon for a good friend or family member to be undergoing a traumatic or extremely stressful event and you can’t be with them. Regardless of their situation- intense care giving; grieving the death of family member or close friend; flare of chronic disease; undergoing surgery or other medical treatments; loss of a job; marital breakup etc.-they need a break from it. Even if you live on the other side of the planet there is something you can do

The science behind my “consider the following” suggestions: George Bonanno, who is the leading researcher on grief and loss, has been very clear about the importance of laughter and distraction,  The more that people smile early on during bereavement, the faster they tend to recover their equilibrium. In many ways distraction and avoidance end up being better ways of managing intense grief than involved grief-focused conversations. Distressed people can become sensitized by such conversations and end up having a worse outcome than they otherwise would.” 

With that in mind, there are a variety of things you can e-mail or text to help “lighten the mood.” This is just a “start you off.”  You know this person best and will have a much better idea of  what they’ll respond to.

Consider the Following:

• Videos
- George Carlin-10 Commandments Love Carlin, butt he’s not for everyone. 
- What would Christmas be without a new Christmas song-Text Me Merry Christmas 

 • Jokes Some people love them and have particular favorites. Others love puns and then there are those that don’t want anything to do with either. Jokes from Comedy Central  has a wide array to choose from for the person that truly enjoys them.

Fun Art
There is always room for some quick art breaks and the following websites are amusing, fascinating and will transport you to another place:
Staggering Beauty: Use your mouse to shake worm guy. Make sure the speakers are on. 
• This is Sand:  What’s not to love about virtual sand painting? Could spend hours doing this.
 • Mandalas: Color or design a virtual mandala.

Music Videos: A friend of mine posts music all the time to Facebook. Never any political comment, just a daily reminder of all the wonderful music in the world to enjoy. You can ask them what their 10 top musicians are and then send them videos to watch. I sent these links to Cheryl this past week, so I’m including them here.
• The Godmother of Rock & Roll: Sister Rosetta Tharpe Live in Manchester, 1964: “I’m singing, oh I’m singing in my soul, when the troubles roll, I sing from morn’ till night, it makes my burdens light…” 

 Qigong/Yoga Breaks: Quick meditative breaks can be very helpful

 • The weekly Wednesday “take a break” has hundreds of ideas that can be sent. Check out the Take a Break Pinterest for inspiration. 

Wednesday, November 19, 2014

Take a Break: Simplify Art Project

I discovered the website Simplify Art, and have been having a lot of fun turning pictures into “modern art.”  

Put in your picture and the site creates random modern art by simplifying images to their core element.  Think it would be fun to give someone the original picture with the simplify art as a holiday present.

 Not interested in today’s activity? Check out the Take a Break Pinterestfor lots of Take a Break ideas. 

Saturday, November 15, 2014

Journal Watch November 2014

• Almost 1 in 5 Americans Plagued by Constant Pain: Almost one-fifth of Americans do daily battle with crippling, chronic pain, a large new survey reveals, with the elderly and women struggling the most. The bottom line: Significant and debilitating pain that endures for three months or more is now a common feature in the lives of an estimated 39 million Americans. Journal of Pain Oct. 

• Smoking and Back Pain: Smokers are three times more likely than nonsmokers to develop chronic back pain, and dropping the habit may cut their chances of developing this often debilitating condition, researchers report. Human Brain Mapping 

• A Purpose in Life May Extend Yours: A study, involving more than 9,000 British people averaging 65 years of age, found that those who professed to feeling worthwhile and having a sense of purpose in life were less likely to die during the more than eight years the researchers tracked them. The Lancet 

• Integrative Medicine Relieves Pain, Anxiety for Cancer Inpatients: Researchers found that integrative medicine therapies (massage, acupuncture, guided imagery, relaxation response)  can substantially decrease pain and anxiety for hospitalized cancer patients. Journal of the National Cancer Institute Monographs 

 Marijuana’s Long Term Effects on the Brain: The effects of chronic marijuana use on the brain may depend on age of first use and duration of use, according to new research. Researchers for the first time comprehensively describe existing abnormalities in brain function and structure of long-term marijuana users with multiple magnetic resonance imaging (MRI) techniques. Proceedings of the National Academy of Sciences (PNAS 

• Mushroom extract,AHCC, helpful in Treating HPV: A Japanese mushroom extract appears to be effective for the eradication of human papillomavirus (HPV), according to a pilot clinical trial. Ten HPV-positive women were treated orally with the extract, AHCC (active hexose correlated compound) once daily for up to six months. Five achieved a negative HPV test result -- three with confirmed eradication after stopping AHCC -- with the remaining two responders continuing on the study. U of Texas Health Science Center

 New Evidence that Exercise Therapy, Acupuncture Benefit Breast Cancer Survivors There is hope for breast cancer survivors struggling with cancer-related pain and swelling. Researchers point to ways to enhance muscular strength and body image in new articles that focus on integrative oncology, which combines a variety of therapies, some non-traditional, for maximum benefit to cancer patients. Journal of the National Cancer Institute Monographs 

• Approves New Vaccine to Protect against Meningitis
• Cautions against “undeclared” food allergens as some food labels may not reliably list all possible food allergens.
• Approves new treatment for rare form of hemophilia

Long-Term PPI TherapyWith Rabeprazole Prevents Peptic Ulcer Recurrence: Long-term use of rabeprazole prevents the recurrence of peptic ulcers in patients on low-dose aspirin (LDA) therapy, according to a study presented here at United European Gastroenterology Week (UEGW). 

Regular Doctor Visits Help Control Blood Pressure: Researchers analyzed data from 37,000 American adults who had their blood pressure checked between 1999 and 2012. Those who saw their doctor at least twice a year were 3.2 times more likely to keep their blood pressure under control than those who saw their doctor once a year or less. Circulation 

• Easy-To-Walk Communities Linked to SharperSenior Minds: Living in easy-to-walk communities may slow mental decline in older adults, according to a small study. Gerontological Society of America 

• Use Chia Seeds with Caution: Despite potential health benefits, chia seeds may pose a risk if they are not consumed properly, according to new research. The tiny, oval seeds -- a rich source of fiber, protein and heart-healthy omega-3 fatty acids -- should not be eaten in their dry, raw form, experts cautioned. This is particularly true for people with a history of swallowing problems or a constricted esophagus, the researchers said. American College of Gastroenterology 

High-Fat, Low-Carb Diet May Help with Tough to treat Epilepsy: A review of five studies found that a ketogenic, or modified Atkins diet, that focuses on foods like bacon, eggs, heavy cream, butter, fish and green vegetables, could help reduce seizures in adults whose condition doesn't improve with medication. Neurology 

Is Milk Your Friend or Foe?: Women who drank three glasses of milk or more every day had a nearly doubled risk of death and cardiovascular disease, and a 44 percent increased risk of cancer compared to women who drank less than one glass per day, the researchers found. Men's overall risk of death increased about 10 percent when they drank three or more glasses of milk daily. BMJ 

• Stroke Prevention Guidelines Emphasize Healthy Lifestyle: The new guidelines advise people to exercise, control blood pressure, don’t smoke, and eat what's known as Mediterranean or DASH-style (Dietary Approach to Stop Hypertension) diets that emphasize fruits, vegetables, whole grains and seeds, plus poultry and fish. Stroke 

 Big Name Diets All Work for a While: Looking at a dozen clinical trials, researchers found that three big-name diets -- Atkins, Weight Watchers and the Zone -- were all "modestly" effective over the course of a year. In studies that compared the plans head-to-head, people lost anywhere from 4 to 10 pounds, on average. And in the few trials that lasted two years -- all looking at Atkins or Weight Watchers -- people often regained some of the pounds they lost. Circulation: Cardiovascular Quality & Outcomes 

• Lactose Intolerant Less Likely to Develop Certain Cancers: A study of nearly 23,000 people in Sweden with lactose intolerance, as well as members of their families, found those who had trouble digesting dairy had lower rates of lung, breast and ovarian cancers than those without lactose intolerance. However, siblings and parents of people with lactose intolerance had the same risk for these cancers as people in the general population, which suggests that the lower cancer risk in people with lactose intolerance may have something to do with their diets. British Journal 

• Live Longer? Save the Planet? Better Diet Could Do Both? A new study shows how a shift away from this trajectory and toward healthier traditional Mediterranean, pescatarian or vegetarian diets could not only boost human lifespan and quality of life, but also slash greenhouse gas emissions and save habitat for endangered species. Nature 

• B Vitamins May Not Boost Memory or Thinking: Taking vitamin B12 or folic acid supplements may not reduce seniors' risk of memory loss, according to a new study of nearly 3,000 people with an average age of 74. Neurology 

• Parkinson’s Drugs May Spur Compulsive Behaviors: Drugs commonly used to treat Parkinson's disease may raise the risk of so-called impulse control disorders, according to a new review. These disorders include compulsive gambling, compulsive shopping and/or hypersexuality. That increased risk was seen in a fresh review of a decade's worth of U.S. Food and Drug Administration (FDA) records. JAMA Internal Medicine 

Hormone Therapy May Up Heart-Related Deaths in Some Prostate Cancer Patients: Giving androgen deprivation therapy (ADT) was linked to triple the risk of heart-related death in men with heart failure or in those who had a previous heart attack. "ADT is a mainstay of prostate cancer therapy, but may not be the best option for all men," said lead researcher BJU International, online 

• Common Blood Pressure Drug May Lower Risk for Lou Gehrig’s: Those who took particular doses of ACE inhibitors  for more than four years appeared to reduce their risk of ALS by 57 percent.  National Institute of Neurological Disorders and Stroke (NINDS) 

• New Drug for Non Alcoholic Steatohepatitis: The FLINT study found that people with nonalcoholic steatohepatitis (NASH) who took obeticholic acid (OCA) had improved liver health during that period, including decreased inflammation and fat in the liver and decreased body weight versus people receiving a placebo. OCA was also associated with increases in itching and total cholesterol. NIH 

• Nearly all Patients with Chronic Kidney Disease Should Take Statins: A comparison of two different cholesterol management guidelines indicates that the vast majority of patients with chronic kidney disease are recommended to receive statins. 50% of people with chronic kidney disease who are recommended to receive statins are not taking them, the study shows. Journal of the American Society of Nephrology (JASN) 

• MoreEvidence Arthritis/Pain Relieving Drugs May Contribute to Stroke Death: Commonly prescribed, older drugs (COX-2 inhibitors) for arthritis and pain may increase the risk of death from stroke, according to a study. "Our study supports stepping up efforts to make sure people with a higher risk of stroke are not prescribed these medications when other options are available," authors concluded. Neurology® 

• No Link between vaccinations, risk for MS: A new study finds no link between vaccines and increased risk of multiple sclerosis or similar nervous system diseases. JAMA Neurology 

• 8 Ways to Save Big on Medications from Consumer Reports: Chances are you’re paying more than you need to for prescription drugs. But thanks to discounts offered at Costco, CVS, Target, Walgreen, Walmart and others, hundreds of common generic drugs can be purchased for pennies per pill.

 • Informal Care for Older Americans Tops $500 B: Each year, people across the United States spend an estimated 30 billion hours caring for older relatives and friends, which costs $522 billion, according to new research. RAND Corp 

Anxiety Can Damage Brain: People with mild cognitive impairment are at increased risk of converting to Alzheimer's disease within a few years, but a new study warns the risk increases significantly if they suffer from anxiety. The American Journal of Geriatric Psychiatry 

• Medical Bills Pricey for Americans, Even with Private Insurance: Many Americans may believe that private insurance can keep major medical bills at bay. But a new survey finds that one-fifth of people with private plans still spend at least 5 percent of their income on out-of-pocket health care costs. The Commonwealth Fund