A new and useful publication to help people plan for long term care was released this week.  The Guide to Legal and Financial Planning Needs of Seniors by Homewatch CareGivers was produced to help educate a growing community of Americans needing long-term care, and more specifically the generation of baby boomers approaching retirement, who are running out of time to get their financial and legal issues in order before needing long-term care themselves.

The baby boomer generation, in many circles, has evolved into ‘the sandwich generation’ by having their income’s and savings accounts tugged at from each end thanks to elder parents needing expensive, long-term care, and college-aged, or adult children still feeding from the trough.

By 2020, baby boomers will swell the senior population from 39 million to 53 million, according to the Centers for Medicare and Medicaid Services (CMS), which means one in six Americans will be a senior!

The Guide to Legal and Financial Planning Needs of Seniors offers information on the following critical areas of focus for those concerned about the future:

Margery Pabst is the co-author of Enrich Your Caregiving Journey (Expert Publishing, February 2009) and is a national speaker and facilitator. Learn more about Margery and her book at www.pivotalcrossings.com.

Our use of language has a critical effect on our emotional lives. We can credit our emotional bank accounts with positive words about ourselves and others, or we can think and talk in negatives that tarnish our present life and diminish our future. Roger Rosenblatt says, "Write with grace rather than pain". For those who aren’t writers, these words can easily be applied to how we speak and think. "Speak and think with grace rather than pain" is a mantra to consider when caregiving. ‘Grace’ suggests looking at ourselves and others through the prism of positive purpose and while ‘pain’ denotes wallowing in all the negatives life has thrown us and allowing ourselves to be victims of every circumstance.

How we speak and think about ourselves and others will create ‘grace’ or ‘pain’ in our lives. Furthermore, the words we choose are crucial to our emotional and physical health.

So how can we focus on positive, graceful words and shift from negative, painful ones?

FIRST, we must LISTEN TO OURSELVES. What is the nature of our thoughts? What exactly are we saying to others, particularly our children? Are there hints of negativity or blatant comments about hypothetical, tragic events to come? SELF-AWARENESS is especially critical for the CAREGIVER.

I’ve caught myself saying things like, "Well, Murphy’s Law will probably be true. If there’s a possibility of something going wrong, it will." Sound familiar? By saying these words, your negative expectation and intention is out there, and your behavior may be affected, so you will actually do things that make your negative statement come true.

For example, if the caregiver says, "Jim always has a hard time getting his pills down", Jim will always have a hard time with his pills. He will meet your expectations and your behavior will suggest through body language and speech that you are ready for the difficulty at hand. When Jim has difficulty and his emotions rise, yours will too and in the process, a DEBIT TO YOUR EMOTIONAL BANK ACCOUNT WILL OCCUR.

SECOND, we must make a shift in our thoughts and language. Creating a shift will bring more honor and respect to our caregiving. Let’s review some examples of making a shift from negative debits to positive credits in our thoughts, speech, and emotional bank accounts:

Kathy N. Johnson, PhD, CMC is a Certified Care Manager and the Co-Founder of Home Care Assistance, Inc. She holds a Doctorate in Psychology from the Illinois Institute of Technology. Kathy is committed to serving the needs of seniors nationwide.

A strong association between coffee consumption and a lowered risk of lethal and advanced prostate cancers has been reported in the data presented at the American Association for Cancer Research Frontiers in Cancer Prevention Research Conference. This comes close to the heels of last month’s action by the Food and Drug Administration to consider the merits of Provenge as a vaccine for prostate cancer.

Insulin and glucose metabolism and sex hormone levels are affected by coffee. All of these play a role in prostate cancer. Kathryn M. Wilson, Ph.D., a postdoctoral fellow at the Channing Laboratory, Harvard Medical School and the Harvard School of Public Health conjectures that there is a plausible association between coffee and prostate cancer. Wilson et al found in a prospective investigation that men who drank the most coffee had a 60 percent lower risk of aggressive prostate cancer as compared to men who did not drink any coffee. This was the first study of its kind that looked at both overall risk of prostate cancer and risk of localized, advanced and lethal disease.

Brain Images Suggest Alzheimer's Drug Is Working – New image technology suggests that Bapineuzumab, a new Alzheimer’s drug, is working.  Studies show the drug reduces clumps of plaque in the brain by 25% which is important because plaque is an underlying cause of Alzheimer’s. 

Ibuprofen May Reduce Parkinson's Risk – A new study from Harvard University has found that taking Ibuprofen may reduce the risk of Parkinson’s disease.  The research showed that people who took three or more Ibuprofen tablets a week had a 40 percent lower risk of contracting the illness than those who didn't take it.  
 

Video Games May Help Battle Depression in Seniors – A new study has found that “exergames,” video games that combine game playing with exercise, can help improving the symptoms of subsyndromal depression (SSD).  
 

Rapid Image Analysis Method Helps Diagnose Alzheimer's Disease – A study from Finland has found that MRIs of the brain can be used to diagnose Alzheimer’s quickly.  Up until this study, diagnosis of Alzheimer’s has been done by review of the symptoms without the aide of brain images.
 

Even though many communities provide some type of senior center program, for many the senior center remains a mystery. If you asked people in your town if they knew where the senior center was located, they would undoubtedly say yes. However, if you were to ask those same persons what actually went on inside the center, they would most likely be at a loss for words.

The senior center is a place that anyone aged 60 or older can visit and offers services that are designed to help the senior live a better life. Many senior centers provide a nutritious meal, recreational and educational programs, legal advice, and medical screening. For instance, a typical senior center may have volunteer doctors and nurses who are available to take blood pressures, provide hearing tests or lend an ear to a senior who might have a health concern.

It is a great place to learn about Medicare, fuel assistance, or about food stamps. It is also a great place to drop in to have a cup of coffee and talk with neighbors.

Editors Note - Caregiver News Roundup will now be appearing every 2 weeks.

Industrial Chemical Linked to Increased Risk of Getting Parkinson’s – A new study has found that exposure to the industrial solvent trichloroethylene increases your risk of coming down with Parkinson’s disease by six times.  Trichloroethylene is an industrial cleaner used in dry cleaning, machine shops and in the manufacture of electrical equipment.

Diabetes Drug Increases Risk of Bone Fracture in Older Women – A study has found that women over age 65 who take thiazolidinedione, a drug to treat Type 2 diabetes, were 50% more likely to suffer bone fractures than women not taking the medication.

57 Million Americans Sickened by Swine Flu – The Center for Disease Control estimates that 57 million Americans have come down with the Swine Flu since April 2009.  

Blood Test May Be Able to Predict Rheumatoid Arthritis – A study has found that blood tests maybe able to detect rheumatoid arthritis years before symptoms appear.  This information make it possible for doctors to identify the disease early and help find the most effective treatments for each patient.

Truth about Heart Disease: There Is No Cure – Heart disease is the number 1 cause of the death in the US and as former President Bill Clinton’s stent procedure shows that while it can be treated there is no cure for it.

FDA Wants to Reduce Radiation Exposure in Medical Tests – The Food and Drug Administration has announced a plan to reduce patient’s exposure to radiation in 3 tests – CT scans, nuclear medicine studies and fluoroscopy.  Medical advances over the past 20 years have resulted in a dramatic increase in radiation exposure from tests.

Marijuana Ineffective as a Treatment for Alzheimer’s Disease – A new study from Canada has found that marijuana is not effective at combating the effects of Alzheimer’s Disease.

Vickie Dellaquila is a Certified Professional Organizer and owner of Organization Rules, Inc, located in Pittsburgh, PA. Her company provides senior downsizing, move management and residential organizing services. She is also the author of the book, Don’t Toss My Memories in the Trash-A Step-by-Step Guide to Helping Seniors Downsize, Organize, and Move.  Recently rated as one of the top 100 best books on Aging on Amazon! For more information, visit www.OrganizationRules.com or call 412-913-0554.

Do you have enough food in your pantry and or freezer to feed a small town for six months to a year?  Are you a pantry or freezer over stuffer or do you know someone who is?  If a disaster ever happens do you know the home to go to with the overflowing pantry so there is enough food for everyone?  This article may be just for you!  Yes, it is a good idea to have some extra food in your home for emergencies, but enough to open your own corner grocery store? You might want to reconsider your shopping habits.

There are many kitchen pantries and freezers that are overflowing with unused or unneeded food. You may be guilty of having just a few extra cans of tomato sauce stored in the basement or garage because you don’t enough room in your kitchen.  I think most of you know someone with a few too many cans of peaches, spaghetti sauce, or boxes of cereal.  You justify your extra purchases because after all, you might need it someday. You are prepared for an emergency. You have also prepared your neighbors, friends, and relatives without them having to do any of the work!

Let’s think about if you need to do a little readjustment in your shopping habits. How many of you while out grocery shopping found a great deal on canned vegetables or frozen bread dough and stock up? After all what a deal!  You go home and stuff your freezer or kitchen pantry with your frugal find.  You think, “Wow, did I find a bargain!” A year or two or three later, you go to the freezer or pantry to retrieve something and that 48 ounce size of pizza sauce is still sitting on the shelf. You think, “Boy I should really use that or I wonder where that came from, did I buy that?” Was it really bargain?

Finding food items on sale and stocking up on them is a great idea, however if you don’t use them or have space for them, why buy them?  So many people fall into this trap of trying to save money, stock up, and have every possible food item on hand.  It can work only if you use what you buy. Our lives change and so should our shopping habits. 

Food spoils after spending some time on the shelves of the pantry and in the freezer. The freezer foods stay fresh for only so long. Next time you clean out your freezer and have to throw out your bargains-think about it in terms of dollars. For example, you paid $5 for that frozen bread dough and now you need to throw it away because it is freezer burnt.  You are not just throwing the frozen bread dough in the garbage; you are throwing away $5 and wasting food. As simple as it sounds, it might help you realize you are overbuying. When you find that can of tomato soup that has an expiration date of 02/05/89, do you really want to pop open the top and heat it up? Think about it. You might want to pass on the soup.

 If you really found some great bargains and cannot pass them up-great stock up. Keep some for yourself that you will use, and pass the rest onto your local food pantry. You are helping out someone who could use some extra help. You may want to consider going through your food monthly and giving food to the food pantry on a regular basis.

Life goes through so many changes and cycles. It is important to adjust and change with life as we change.  Next time you are in the grocery store, think before you buy and change your shopping habits as your lifestyle changes.

Being a caregiver is an incredibly stressful experience and a new study by the MetLife Mature Market Institute has some startling conclusions about its impact.  The report examined employees serving as caregivers and found that they are more likely to suffer from health problems like diabetes, high blood pressure and depression than their co-workers.

Some of the key findings in the study include:

• Caregivers have health costs which are 8% higher than people who are not caregivers and cost employers $13.4 billion a year.

• Employees serving as caregivers were more likely to report poor health than their co-workers.  For example, 17% of female employees ages 50 and older who were caregivers reported fair or poor health compared to 9% of non-caregivers.

• Employed caregivers find it difficult to take care of their own health care needs and are less likely to get preventive care such as mammograms, annual physicals and preventive health screenings.

A recent study conducted in the United States shows a majority of adults who care for their elderly parents or relatives. Individuals aged 48 onwards segregate their lives between working and care giving. The survey, titled ‘Caregiving in the U. S. 2009’, was sponsored by the AARP and The National Alliance for Care giving and funded by The MetLife Foundation.  The survey concluded; 86% Americans, their intermediate age being 48, care for a relative, two-thirds of which are women. Giving around 19 hours a week to their loved ones, while simultaneously handling work and running a household. 36% of these care for a parent, supporting and caring for about four and a half to five years.

According to Elinor Grinzler of the AARC one of the most prominent changes seen in the survey is the effect of care giving on regular work.  The survey showed results with two-thirds of caregivers who either go late, leave early, or take time off from work. With 20% who take a leave of absence, 12% who work part-time or have taken on less demanding jobs, 6% who refused a promotion, 6% consequently lost job benefits, 3% retired early, and 9% who quit their jobs to care for parents or relatives.

Kathleen Ballweg, a flight attendant based in New York, had to take leave to tend to her father who had Parkinson’s disease. After taking a 6 month leave of absence, she worked part-time shuttling back and forth. She now cares for her mother, who has also contracted Parkinson’s, working part-time for the airline. Kathleen’s sister has also moved back to Wisconsin to help out with caring for their mother. This is turning out to be a growing trend among American families, with more members of the family assisting with care to avoid additional investments like assisted living.

A majority of individuals who are care givers do not consider it an adversity. The survey showed 57% people in excellent to good health with 23% of fair to poor health. However, 53% stated their responsibilities isolate them from friends and families and more likely to be emotionally stressed.

The survey also asked of care for disabled children, the report shows an astounding one of seven individuals who care for a disabled child. While caregivers for the elderly do not face many problems with coordinating healthcare, 40% of caregivers for children find it relatively difficult to coordinate healthcare while managing care at home and at school.

Kathy N. Johnson, PhD, CMC is a Certified Care Manager and the Co-Founder of Home Care Assistance, Inc. She holds a Doctorate in Psychology from the Illinois Institute of Technology. Kathy is committed to serving the needs of seniors nationwide through superior in-home senior care.

One In Five Nursing Homes Has Poor Quality Ratings – According to Medicare, 20% of nursing homes have poor quality of care and receive one or two stars out of five in the Medicare ranking system. 

How Doctors Can Assist Caregivers – Doctor’s can help caregiver by asking them questions not just about the patient but also the caregiver’s health, needs and well being.

Brains in Older People Are Good at Sorting Out Useless Information – A new study has found that the brains of older people are better at sorting out useful information versus useless information than those in younger people.

White House Middle Class Task Force Unveils Caregiving Initiative – As part of the federal budget for Fiscal Year 2011, the White House is proposing initiatives to ease the burden for caregivers including $103 million to expand the availability of respite care, counseling, training, referrals, and adult day care.

Vickie Dellaquila is a Certified Professional Organizer®, Certified Relocation Transition Specialist and owner of Organization Rules®, Inc, located in Pittsburgh, PA. Her company provides senior downsizing, relocation and residential organizing services. She is also the author of the book, Don’t Toss My Memories in the Trash-A Step-by-Step Guide to Helping Seniors Downsize, Organize, and Move and the Moving Workbook. Rated as one of the top 100 best books on Aging on Amazon! For more information, visit www.OrganizationRules.com or call 412-913-0554.

Harry and Doris lived in their beautiful 2 story home for 46 years. Their home used to be filled with growing children, the neighbor kids; now it is empty. At some point in their life, they were able to race up the stairs in their home.

eCare Diary is pleased to introduce Priya Vin, a new guest expert on Aging and intern.  Priya has worked in the aging and developmental disabilities field for 5 years and is based in northern New Jersey. Her experience has been in program management. She received her Master's in Social Service Administration from the University of Chicago, where she specialized in health care policy. She is excited to be contributing to eCare Diary. Priya's contact information is priyavin80@yahoo.com.

Access to food or groceries is potentially another challenge an older adult can face. It can be a frustrating one as well. But it is an important issue to think about when caring for the older adult in your life.

Today, the Council of Senior Centers and Services (CSCS) of New York City held its 21^st annual conference on Aging.   Their keynote speaker was Kathy Greenlee, the Assistant Secretary for Aging at the U.S. Department of Health and Human Services.  Prior to this role, Ms. Greenlee served as Kansas Secretary of Aging where she oversaw the state’s Older American Act programs, Medicaid long term care payments and regulation of nursing home licensure and survey processes.  She has devoted her career to the advancement of health and independence of seniors.

Ms. Greenlee discussed three important areas in aging policy:

1)    Preventative health and nutrition
2)    Cultural change in nursing homes
3)    Support for caregivers

1)  Preventive Health and Nutrition - Ms. Greenlee discussed the importance of nutrition services including keeping seniors fed and at home and touched on dental care as an integral part of nutrition.  She emphasized that the department will promote health programs that are scientifically based, particularly in the case of chronic disease management programs.   According to Ms. Greenlee, “it is not too late to invest in senior prevention programs.”

Genetic Link Found for Parkinson’s Disease – A new study has found that a combination of genetic risks, dietary habits and other environment factors lead to the development of Parkinson’s disease.

Parkinson’s Disease Rehabilitation Center Launched – The American Parkinson’s Disease Association and Boston University have opened the first rehabilitation center aimed specifically for people with Parkinson’s disease.  The center will emphasize exercise, a healthy lifestyle and physical therapy as a way to combat and slow progression of the disease.

Blood Pressure Drug Reduces the Risk of Dementia – A new study has found that people who take drugs to reduce their blood pressure have a 50% lower risk of coming down with dementia.

Caregiver Stress Linked to Hire Risk of Stroke – A new study for the journal Stroke found that caregivers who found the role stressful were 23% more likely to have a stroke.

A broad range of innovations for seniors were debuted at last week’s Consumer Electronics Show(CES) in Las Vegas, from automatic fall detection devices and brain exercise software to iPhone applications and new health websites.  Without question, cutting edge technology for seniors is emerging quickly and becoming more user-friendly. 

This being my first time at CES, I came away amazed and overwhelmed after 3 days of walking through 3 major exhibit halls that each seemed larger than football stadiums.  With over 2,500 exhibitors and over 125,000 attendees, this was a candy store moment for the techie in all of us.    

This conference was so vast that I am addressing it in  3 parts beginning with this post.  Part 2 of this series will address lifestyle technologies for boomers and seniors and  in Part 3, I will write about the Silver Summit, a conference on aging and technology that took place during CES.

Since eCare Diary is dedicated to seniors and caregivers, I will focus this review on new technologies relevant to managing care for aging loved ones. 

1)       Wellcore’s new Personal Emergency Response System is a new lightweight, wearable, and wireless clip-on device that monitors movement, especially a fall.  If your parent or loved one falls, an email or SMS text message will alert you immediately without their having to push a button triggering the added step of an operator making a phone call.  The base unit with one clip-on device retails for $199 along with a monthly service fee of $49.  An additional clip-on is $99.  The product will be available for purchase in March.  For information, visit www.wellcore.com.

In the new year’s hubbub about improving life, little or no attention is paid to the debits and credits of our emotional lives and bank accounts, especially when we are caregivers.  Like our financial and physical health, heeding our balance in emotional accounts is critical to overall health and well being.

To apply financial language to our emotional life, consider the withdrawals you make every day without any conscious choice of putting in necessary credits.  Are you amassing too many debits, thus ending up with an overdrawn emotional account?  Debits certainly are a necessary aspect of life and of caregiving; we must expend and give time to others, but to make up for those debits, we must also credit our accounts with emotionally nurturing activities and quiet moments we give to ourselves.  Spending that time for ourselves is a vital new year’s present we must promise and reserve each day.  As I write in my book, Enrich Your Caregiving Journey, “We’re reminded of that admonition every time we fly in a plane.....to put the oxygen mask on ourselves first and then to assist others”.

The International CES (Consumer Electronics Show) started today in Las Vegas and runs through Sunday, January 10.  It is over 40 years old and the largest consumer technology show in the world with over 2,500 exhibitors and over 110,000 attendees expected. 

As part of the show, the Silvers Summit will take place on Saturday, January 9.  This is a conference on technology for boomers and seniors where, according to the site, “Experts weigh in on lifestyle products and caregiving technologies.    

I am attending for the first time and will represent eCare Diary as the first centralized website for caregivers and seniors offering innovative long term care web technology.  I will blog and post updates during the show to share highlights and latest innovations.  You can follow me on Facebook, Twitter or LinkedIn.  

Assistance to help people pay for the costs of long term care has been included in both the House and Senate healthcare reform packages.  This bill, known as the CLASS Act, establishes a voluntary, affordable government long term care insurance program. 

The coverage is designed to keep people in their own houses and out of institutions like nursing homes whenever possible. Some of the services covered under the CLASS Act include home care, respite care, home modifications, transportation, and assistive technologies.

The premiums will work in a similar manner to life insurance and will vary based on age at the time of purchase.  They are expected to increase periodically with age. 

In order to qualify for benefits, an individual is required to be 18 years old or older and have paid monthly premiums for at least 5 years.  In order to receive coverage, a person must:

• Be unable to perform two or more activities of daily living (ADL) e.g. eating, bathing, dressing, transferring.
• Have a cognitive disability that requires supervision or hands-on assistance such as Alzheimer’s disease, multiple sclerosis or traumatic brain injury.

Senate Passes Healthcare Reform Bill – The US Senate passed a healthcare reform bill on Christmas Eve.  The House of Representatives passed a bill in November.  The two bills will be merged and a final vote is expected by late January.

Alzheimer’s May Lessen the Risk of Getting Cancer – A new study found that people who are suffering from Alzheimer’s are 69 percent less likely to get cancer than people not suffering from the disease.

Nursing Shortage Is A Concern for Baby Boomers – The US is expected to face a nursing shortage just as the baby boom generation begins to retire.  By 2025, the US will be facing a shortfall of 260,000 nurses.

Healthcare Will Need to Change as the Nation Ages – A report from the Institute of Medicine says US is not prepared for the coming boom of senior citizens.  A major concern is a lack of medical professionals, such as geriatricians, to treat aging conditions. 

Happy New Year!  2009 was a big year for eCare Diary.  Since our launch in September, we have seen our daily visitors and registered users increase beyond our expectations and the numbers keep growing each month.  We are so pleased at the response and feedback from the eCare Diary community.  We appreciate the time people have taken to share their thoughts and suggestions. 

We are planning new additions for the site which we will be rolling out over the next few weeks.  Before we go live with them, we will seek your valuable input.  As always, we welcome comments, thoughts and suggestions from our users.  Please share them here.

We hope you have a great 2010!

After months of discussion and negotiation, the US Senate has finished its healthcare reform bill and will be voting on it Christmas Eve.  The US House of Representatives passed its version of healthcare reform in November which means it is likely that a bill will be on President Obama’s desk in early 2010.  This legislation would mark the first major expansion of healthcare coverage in the United States since Medicare and Medicaid were created in 1965.  

I worked on the last healthcare reform effort as a member of the Clinton Healthcare Reform Task Force and Legislative Director to Congressman Eliot Engel (D-NY).  I believe this legislation is important and will be an improvement over our current healthcare system which does not work and cannot be sustained in its current form. 

Helping the Uninsured

There are current 47 million Americans who have no health insurance.  The uninsured are both an economic and social problem.  They are an economic problem because the uninsured raise the cost of health insurance by over $1,000 per year for every family.  Most uninsured people get care through emergency rooms which are required to treat everyone regardless of their ability to pay.  These are hidden costs which are passed along to everyone in the form of higher insurance premiums.

US Senate Set to Pass Healthcare Reform by Christmas – An agreement has been reached in the Senate on a healthcare reform bill and a vote is expected before Christmas.  The bill is expected to be merged with the one passed by the US House of Representatives in the New Year.

Participating in Social Services Activities Can Improve Senior’s Brain Function – A new study has found that volunteer activities such as tutoring students can help improve the brain function of older individuals.

Alzheimer’s Takes A Toll on Finances as Well as Memory – Providing daily care to Alzheimer’s patients including feeding, bathing, and other basic activities is costly and takes a huge toll on the finances of the patient and their families. 

Coffee, Tea May Help Prevent Diabetes – A new Australian study has found that drinking coffee and tea reduce your risk of developing Diabetes Type 2.  The study reports that every cup of coffee you drink reduces the risk of diabetes by 7 percent.

Obesity, Inactivity Are Having a Negative Impact in the Fight Against Heart Disease – New information provided by the American Heart Association finds that medical technology is getting better at treating heart and cardiovascular problems.  However, lack of exercise and obesity are reversing many of the gains being made in medical technology.

Margery Pabst is a writer, speaker, facilitator and an expert in personal and family communications. Her four books explore some of life’s key transitions—moving your family, leaving home, and retiring. Her most recent book, Enrich Your Caregiving Journey, emphasizes how to take care of yourself while caring for others. Practical tips are introduced through a series of engaging stories and the reader is invited to use a personal journal section at the end of each chapter. For more information, see www.pivotalcrossings.com.

As the holidays approach, and swiftly take over your time, energy and focus, feelings of listlessness and possibly depression can take over.  You may feel as if you are stuck on the holiday path, and when it abruptly ends, feelings of exhaustion and a “what’s next?” mentality prevail.  The caregiver is already overwhelmed, but when holiday anxieties are factored in, the stress can hit an all-time high.  Here are some tips to follow to prevent the holiday doldrums from taking over both in December and January.

Be selective for celebrations.  Save some get-togethers for mid-January.  Remember that there is no need to push everything into a small about of time.  Thinking you can take care of the patient, family, food, presents, vacation plans, holiday parties, and decorations is unrealistic.  Take this time to relax, and relieve yourself of stressful holiday responsibilities.  Remind yourself that the only expectations are the ones you have put on yourself over the years.  Everybody risks overload during the holidays, especially caregivers.  Feel free to take a few deep breaths, and save some of the celebrations and festivities until mid January.  Permit yourself to save a couple of gifts to unwrap after the holidays.  Plan something special for mid to end January.  Allow yourself a recovery and reassessment period after December.

The National Alliance for Caregiving and AARP released a new report about caregivers in the U.S.   It is an update of the last one issued in 2004.  In just 5 years, I am amazed by some of the new information and how significantly some of the numbers changed. 

The report is based on interviews with 1,480 caregivers throughout the U.S.  These caregivers are unpaid, family caregivers.  Of the caregivers interviewed 32% were minorities, including African-Americans, Hispanics and Asian-Americans.

Interesting facts about caregivers

·         There are 65 million caregivers in the U.S. or 30% of the adult population

·         66% of caregivers are female

·         Average age of caregivers is 48

·         86% of caregivers care for a relative; 36% care for a parent

·         65% have been caregiving less than 5 years; 31% 5 years or more

Observations:  The total number of caregivers is a dramatic increase because in 2004, the projection was 44.4 million.  Also the average age of caregivers increased indicating that younger caregivers under the age of 50 declined.  This means the responsibility of caregiving continues to fall on the shoulders of baby boomer women.  In addition, the percentage of those caregiving for 5 years and longer is increasing because of the longer life span of the aging population.

Delaying Aging Process May Help Protect Against Alzheimer’s -  A new study has found that slowing the aging process in mice with Alzheimer’s delays the start of the disease.  It has promise to help humans with the disease.

Irregular Arm Swing Maybe A Sign of Parkinson’s Disease – Some neurologists believe irregular arm swings may be an early sign of Parkinson’s.  Early detection of the disease is important for treatment and slowing its progression.

Caregivers Remain Mainly Women – A new study from the National Alliance of Caregiving and AARP found that caregivers remain overwhelmingly women.  The study also found that caregivers are generally employed and spend 19 hours a week caring for a loved one or close friend.

Lowering Medicare Eligibility Age to 55 Proposed As Part of Healthcare Reform – The United States Senate is considering allowing people from ages 55-65 to buy-in to Medicare if they do not have other health insurance.

• Medicare Buy-in for People Ages 55-65 – The Senate bill will lower the age people can sign up for Medicare from 65 to 55 and allow people between 55 and 65 to buy-in to this program if they do not have other insurance.  This would be the largest expansion of Medicare since it began more than 40 years ago.
• Federal Employees Health Program Option – The Senate bill will create a national insurance program mirroring the Federal Employees Health Program where the uninsured could buy health coverage.  It would be run by the federal government but would include only private insurance plans.  The Federal Employees Health Program covers all federal workers including Congress.
• Public Health Insurance Option “Trigger” – Under the Senate proposal, the public health insurance option would only be established if private insurers do not participate in the Federal Employees Health Program described above. 
• Reform of the Insurance Market – The Senate bill will require that insurance companies spend at least 90 cents of every dollar on health care services.  Many insurers currently spend 85 cents or less of every dollar on medical care.

The US House of Representatives has already passed a version of healthcare reform and the Senate is expected to vote on its bill before Christmas.  Once that occurs, the two bills will need to be reconciled and passed again by both houses of Congress before they can be sent to the President for signature.  We will continue to keep the eCare Diary community updated on this important issue as it moves through the legislative process.

Home Health Care Payment Changes Generate Concern – Planned reductions in Medicare home health care payments included in health reform are raising concerns because Medicare patients are the biggest users of these services.  

Smoking Increases the Risk of Colorectal Cancer – A new study shows that long time smokers are at a higher risk of developing colorectal cancer.

Muscle Cell Infusion Shown to Help with Incontinence – A new study has found that cells grown in labs have helped animals intestines shut properly again.  If successful in humans, this treatment could help people suffering from fecal incontinence and acid reflux disease.

Constipation Maybe an Early Sign of Parkinson’s Disease – A study by the Mayo Clinic has found that people suffering from Parkinson’s disease are twice as likely to have a history of constipation than people who do not have the illness.

Understanding Which Vitamins Are Worth the Money – Americans take many vitamin supplements.  However, many people take vitamins they don’t need which not only can cost you money but may not be good for you.

Apathy Common in Patients with Dementia – A recent study has found that apathy is one of the most common psychological problems affecting people with dementia.  More than half of patients suffering from the disease lack motivation and initiative.

Too Much Exercise May Increase Risk for Arthritis – A new study has found that middle aged people who exercise a lot may be putting their knees at risk for Osteoarthritis.

I am thrilled to announced that eCare Diary will be on the popular “Coping With Caregiving” national radio show this Saturday, December 5.  The show is on wsRadio.com, the world's largest talk radio station with over 3 million listeners monthly.  I will discuss the challenges of caregiving and how eCare Diary can help.

The radio show features four guests and is broadcast live from 3-4:00 pm Pacific Time (6-7:00 pm Eastern), with my interview at 3:15 pm, segment #2. To listen in, simply click on the “listen live” button at the top of http://www.wsRadio.com/CopingWithCaregiving. If you miss the live broadcast, by Monday evening December 7, you can listen to the online archive anytime. If you need help with Internet radio see http://www.wsRadio.com/how-to-listen.cfm.

The host of the 7½ year old program, Jacqueline Marcell, is an eldercare advocate, international speaker, and author of the best-selling book “Elder Rage.”

I hope you will listen and send me your comments!

Smoking May Be A Risk Factor In Lou Gehrig’s Disease – Researchers have established that smoking is risk factor in amyotrophic lateral sclerosis (ALS) known as Lou Gehrig’s Disease.

Chronic Pain Linked to Increased Falls Amongst Seniors – More than two thirds of older adults suffer from chronic pain.  A new study has found that this pain is a reason for falls in people over 70 years old.

Baby Boomers Getting More Hip Injuries – Today’s senior citizens are more active than previous generations and doctors are seeing more hip and pelvis injuries because of it.  This trend is expected to continue as the baby boomers begin to retire.

A New Cause for Alzheimer’s May Have Been Discovered – Researchers in Spain have discovered that a precursor to nerve growth factor (pro-NGF) may play a role in Alzheimer’s disease.  High levels of pro-NGF are found in Alzheimer’s patients and this accumulation may lead to natural brain cell death.

Its open enrollment season for Medicare Prescription Drug programs from November 15 to December 31, 2009.  If you are covered by Medicare and are 65 or older, now is the time to choose a plan.

The Medicare prescription drug program is 4 years old.  Yet there is still confusion about how to choose a plan that best fits the needs of you or your loved ones.  I will attempt to clarify some of the questions about this program. 

How Do I Get Prescription Drug Coverage through Medicare

Medicare provides coverage for prescription drugs in both the traditional Medicare plan and in the Medicare Advantage program (Medicare HMOs).  In the traditional program you can go to any doctor who accepts Medicare but must meet a deductible and pay 20% of the costs.  In a Medicare Advantage plan, you pay much lower out of pocket costs but are restricted to doctors who participate in the insurer’s network.  (A future blog will offer more detail about Medicare Advantage plans.)

If you are in a traditional Medicare, you must choose a prescription drug program offered by a private insurer.  If you are in the Medicare Advantage plan you will receive your prescription drug coverage from the Medicare HMO you choose.

If you are 65 and this is the first year you are eligible for this coverage, it is important that you sign up immediately because there is a 1% penalty for every month penalty that you wait.  For example, if you wait a year, you will pay 12% more than the person who signed up immediately. 

What are the Prescription Benefits that Medicare Offers

Medicare requires that all plans provide a minimum level of coverage but many offer better benefits.  In 2010, Medicare requires that plans provide the following:   

For this Thanksgiving holiday, we have so much to be thankful for. 

We thank all of you, the community of eCare Diary caregivers, visitors and partners, who’ve helped make the site a success in such a short period of time.  Our mission was to create a centralized place where caregivers could find help, information, and the support they need.  John and I developed this site based on our own personal frustrations as caregivers with the hope that future caregivers would never have to go through what we did. 

I am thrilled to report that in only 10 weeks since eCare Diary went live, the number of visitors and registered users more than exceeded our expectations.  Response to the site has been amazing!  We are overwhelmed by the emails offering thanks, support and terrific new ideas.

We are thankful for our experiences as caregivers.  It wasn’t a role we expected or wanted.  No one wants to watch their parents suffer through long term disease.  However, while those were very difficult, sad times, that experience gave us a hard and fast education on long term care.  We were exposed to information, resources and communities that lead to the creation of this site.

We are thankful for the loved ones in our lives more than ever.  When you’ve suffered loss and death, you appreciate the people in your life in a whole new way.  Around the holidays, John thinks about his parents a lot wishing that they were alive to have met our daughter, Avery.  Their absence makes me more thankful than ever that my parents are still alive, and I appreciate them more profoundly.

We are thankful for our daughter Avery who just turned 19 months old.  She has opened our hearts in ways we never expected.  Giving birth to her reminded us of the preciousness and volatility of human life, interestingly similar to what we observe as caregivers.

We are thankful that eCare Diary is becoming a family affair.  John’s sister, Polly Whitehorn, recently joined us as Director of Special Events and Outreach.  Formerly of the Arthritis Foundation, Polly’s experience and networking has been invaluable in getting the word out about eCare Diary.  Susan’s brother, Kevin Kim, has also joined eCare Diary as Web Designer.  We are so fortunate to have his talent for developing clean, consumer-friendly designs; he is in the process of redesigning the site for eCare Diary 2.0 coming soon!

We are thankful for many new friends we’ve made and partnerships we’ve formed.   Their generosity and assistance have helped propel eCare Diary.  We thank and acknowledge them below.

We wish you a very Happy and Healthy Thanksgiving!

Acknowledgements:

Bill Walters, CEO of ALTHA (a hospital trade association), for featuring a 2 page story on eCare Diary in ALTHA’S quarterly newsletter

Denise Brown, creator of Caregiving.com (blog for caregivers), for inviting John to write a 3-part series on his caregiving experiences with his father

Howard Gleckman, author of Caring for Our Parents, for his long term care expertise

Margery Pabst, author of Enrich Your Caregiving Journey, for her caregiving expertise and articles

MarketWatch.com for inviting John to write “Obamacare: Why it’s Different This Time”

Chris Lombardi, of WomensVoicesForChange.org,  for publishing my article “Sex in the Workplace: A Caregiver’s Story”

Jason Alba, Founder of JibberJobber.com (a relationship management website for professionals and entrepreneurs), for his advice, constant support, and plugs

Katherine Lewis, of CurrentMom.com (a blog for tech mom entrepreneurs), for publishing my story, “Becoming An Accidental Entrepreneur”

Karla Lightfoot and Stella Grizont, of LadiesWhoLaunch.com (women entrepreneurs website), for promoting the site and connecting me to an amazing community of female entrepreneurs

Jean Levin, founder of Caring From a Distance, for her advice, thoughts and insights.

Facebook Fans & Friends, your thumbs up and support encourage us all the time!

New Guidelines Recommend Mammograms at 50, Instead of 40 – The United States Preventive Care Task Force changed the recommended age for starting mammograms every two years from age 40 to age 50.  The new guidelines have created controversy and confusion.

Alzheimer’s Caregivers Overlooked – Advocates for Alzheimer’s caregivers are concerned that policy-makers overlook the unique challenges of caring for these patients.

Surgery in Older People Does Not Cause Memory Problems – For many years it was believed that surgery in older people could be the cause for memory lose.  A new study has found that surgery has no impact on memory in older adults.

An Overactive Immune Response May Be Cause of Viral Infections Amongst Seniors – A study at Yale University has found that exaggerated immune response to viruses may be why senior citizens are more likely to contract viral infections that younger people.

Vitamin D May Impact Multiple Sclerosis – Australian researchers have found that the level of Vitamin D in a person’s system impacts the chances of having a Multiple Sclerosis attack.  The study found the higher the level of Vitamin D, the lower the chance of having an attack.

Editor’s Note:  eCare Diary is pleased to announce that Michael Chien, co-founder of Head to Toe Care LLC, is a guest blogger today.  Head To Toe Care is a free website offering practical tips for home based caregiving.  Medical professionals give step-by-step instructions, symptom management, and medical provider interaction tips.

My friend is a registered nurse experienced in hospice and palliative care.  This is her story.  Her father is a retired Air Force colonel—he served as a commander in three wars and assumed the responsibility to care for his troops.   He still has this responsibility.  

Last Saturday evening, she received a frantic call from her father that one of his “troops” needed assistance.  They rushed over to the condo of his friend, a retired officer and doctor.  He had been discharged from the hospital after a 7 day stay which included ICU care.  He was discharged to his “home” which is a condo in the independent living section of a life care community.   He had been “home” for about 4 hours when another friend happened to stop by for a visit.  He found the doctor in a chair, in the living room, with no ability to care for himself, or call for help. There were no sheets on his bed and no clean towels or washcloths. There was nothing to eat or drink within his reach, and no possible way for him to get to the bathroom. Recognizing that the needs of the doctor were far beyond his abilities, the friend managed to place the doctor on the sheet less bed and telephoned my father for help.

When they arrived, what they found was heart wrenching.  Not only was the hospital gown saturated with urine and feces, there was evidence of old as well as new urine and feces through out the small condo. It took them two hours to see to his basic needs of bathing, nutrition, making the bed, positioning him comfortably and cleaning the condo as best we could.   The colonel is a smart and capable man.  He had insight to know that he could not have cared for his friend alone.  With her directions, he was able to learn and participate in simple care giving for his friend.          

Sadly, this story is not unique. This scenario is happening all the time.  People are being sent home from various health care facilities (hospitals, rehab centers, etc.)   While care needs are evident, there is little if any communication to achieve a seamless transition between the needs of the patient from the outpatient setting to the inpatient setting, and then back to the “home” setting.  With “real” discharge planning—this situation could have been avoided. A paid caregiver could have been hired as there were no family members available because the family lived out of state. When there are no funds to pay for a hired caregiver, than it is up to family members and friends to see to caregiving needs.  However, the family needs to be instructed on how to provide care.    

This type of caregiving information is vital for families and friends.  This will ensure that those who need care can maintain their dignity and get the care that they deserve.

Allowing My Father to Be Independent While Convincing Him He Needed Help

Parkinson’s is a degenerative disease so when my father was initially diagnosed the medications addressed many of the symptoms permitting him to live independently.  However, as the disease started to take its toll on his body and the medications were less effective, it became harder and harder for him to live without help.  He started to fall, had trouble making meals for himself, dressing himself and bathing himself. 

Medicare Prescription Drug Enrollment Begins - The annual enrollment period for the Medicare Prescription Drug program starts November 15 and ends December 31.  Seniors are encouraged to shop around for the coverage that best fits their needs.

Caregiver Crunch Coming – The aging of the baby boomers, fewer family members and the increasing number of children not living near their parents is going to create a shortage of family caregivers in the near future.

New Law Prohibits Genetic Discrimination – A new law will prohibit employers from requesting genetic tests or considering genetic history in hiring, firings or promotions.  The law also prevents health insurers from requiring genetic tests as a condition of coverage or to set premiums.

Lupus Drug Submitted to FDA for Approval – Experimental Lupus drug Benlysta has completed its first round of testing and is headed to the FDA for approval.  If approved, the medicine could be available by late 2010.

Gene Mutation Is Linked to Parkinson’s Disease – A study in Natural Genetics has found that mutations of the alpha-synuclein gene and microtubule associated protein tau increase the risk of getting Parkinson’s disease.

eCare Diary is pleased to present a series on financing long term care during this National Caregivers Month. We invite experts on different topics to explain the basics and provide helpful information. The first topic is reverse mortgage which has received much attention during the economic downturn.

Martin Dekom is a discount reverse mortgage specialist with Jacob Dean Mortgage and is based in Manhasset, NY. For years, he has been deeply involved in personal financial planning, what he calls "kitchen table economics." He has been widely quoted by local media on reverse mortgages and has spoken extensively on the topic. He is also very involved in the community, having served as president and chairman of the Long Island Junior Chamber and is active on elder issues. Martin’s contact information: martin.dekom@gmail.com, 516 850-2717, 34 High St, Manhasset, NY 11030.

Editors Note:  In honor of National Family Caregivers Month I will be doing a 3 part series on my caregiving experience.  It will be cross posted at Caregiving.com.

My father was diagnosed with Parkinson’s disease in early 2001 and passed away from it 2 years ago at age 83.  His diagnosis was a life changing experience which resulted in returning to my hometown of New York City from the West Coast and eventually becoming his caregiver.

My father, Ken, started to have hand tremors in 1996, an early symptom of Parkinson’s and a number of other conditions.  He was referred to a neurologist who told him he did not have Parkinson’s but prescribed medication to relieve the trembling.  Incorrect diagnoses of this disease are common because there is no test for Parkinson’s.  Doctors are left to make decisions based solely on symptoms. 

For most of the late 1990s my father lived a full and productive life with few signs that he was suffering from the disease.  In retrospect, there were signs my father had Parkinson’s long before it was properly diagnosed.  He had always had tons of energy yet he started to feel fatigued.  He began to shuffle as he walked and his posture became stooped.  These are all symptoms of Parkinson’s disease.

Healthcare Reform Bill Will Lower Medicare Prescription Drug Costs – The healthcare reform bills being considered in Congress will save $24 billion in the Medicare Prescription Drug program which will be used to close coverage gap known as the "donut hole." 

Parkinson’s Disease May Be Slowed by Antioxidant – A new study found that the progression of Parkinson’s can be determined by the level of the antioxidant urate in serum and cerebral spinal cord fluid. Higher levels of this antioxidant can help slow the disease.

Seniors with Dementia Have a Higher Death Rate from the Flu – Senior citizens who suffer from dementia are 50% more likely to die from the flu than those not suffering from dementia. Part of the reason is these patients have a harder time communicating their symptoms to doctors. 

Diabetics Suffering from Alzheimer’s Have Slower Memory Loss – A French study has found that diabetics with Alzheimer’s have slower memory loss than people suffering from only Alzheimer’s. 

Coffee Can Be Good For Your Health –A Harvard Medical School study has found that coffee can help prevent or slow numerous diseases including cancer, diabetes type 2 and Parkinson’s disease. 

Tai Chi Can Help Arthritis of the Knee – A British study has found the Chinese exercise can help relieve osteoarthritis in the knee. 

Robot Can Help Aging Parents Live Independently – A session at TEDMED, a healthcare technology conference, discussed the use of robots to help care for aging parents at home. This technology could eventually help more people stay in their homes.

Today I attended a conference for professional geriatric care managers (GCMs) in New York City.  I had an idea of who they are and what they do, but admittedly, wasn’t one hundred percent clear.  Interestingly, I learned today that many people don’t know who they are or that their service even exists.  Today I got my education and would like to share it with you.

Who & What

GCMs are professionals who conduct in-depth assessments of elderly clients to identify solutions and suggest a customized care plan.  Their knowledge, experience and network can help families navigate the complex system of eldercare.  They can assist with a wide range of topics: 

• Financing care (long term care insurance, Medicare, Medicaid)
• Placement in care facilities (such as adult daycare, nursing homes, assisted living facilities)
• Finding home care agencies
• Eldercare products
• Home living space and design
• Legal documents
• End-of-life planning

GCMs can also serve as a third party when families are having trouble discussing care planning amongst themselves.  They can guide the conversation and even help families through conflicts. 

My father lost his battle with Parkinson’s disease a little over 2 years ago.  He wasn’t just my father; he was also one of my best friends, so his death hit me very hard.

We would talk almost every day about sports, politics, the world and what was going on in our lives.  To this day, I miss him greatly and think about him daily. 

My grieving period was bittersweet because 3 weeks after my father passed away we learned that my wife, Susan, was pregnant with our first child.  We had been trying to get pregnant for 22 months, and finding out we were bringing another life into the world was truly a cycle of life moment. 

The impending birth of our daughter made the grieving process easier but didn’t make the feelings go away.  I went through most of the 5 Stages of Grief - denial, anger, bargaining, depression, and acceptance.  In the literature on grief, these stages are presented in a linear manner where you go from one stage to the next until you accept what has happened. 

I found my grief to be circular and that not all the stages applied to me.  For example, I was never angry about my father’s death.  He lived until age 83 and had been suffering horribly the last year as the Parkinson’s disease ravaged his body.  While his death was incredibly sad, in some ways it was blessing.  He wasn’t suffering anymore, and he died peacefully with his family surrounding him just as he wished.

Swine Flu Emergency Declared – President Obama declared a swine flu emergency Saturday.  This allows hospitals to move emergency services for swine flu into non-emergency room settings which will help speed treatment and protect non-infected patients.

Swine Flu Hits Children and Young Adults the Hardest – Of the 1,000 people who have died from swine flu, approximately 100 have been children.  It is believe that swine flu is hitting this population harder because their immune systems have not been exposed to as many viruses as older people.

The David Letterman scandal has motivated me to share a painful story about sex in the workplace involving a caregiver and my grandfather.  As my grandfather gets older (he’s 90 years old) and nearing the end of his life, forgiveness has been on my conscience.

My grandmother was young in her 50’s when she was diagnosed with rheumatoid arthritis, a degenerative disease that causes inflammation of tissues around the joints.  Before it really debilitated her, I used to visit her after work and on the weekends to help.  I’d run errands, take her for walks, give her baths, do her hair and put on her makeup.  I did all of these things with great love and pleasure. 

I am so grateful for these bonding moments with her because they are seared in my memory and my heart.

In retrospect, I wish I could have been her full-time caregiver when the disease got worse.  She was living with my grandfather.  Their 50 year marriage had very deep bonds, but was very bitter because of past jealousies, infidelities and separations.  In spite of all this, they stayed together because that’s what people of their generation did.

Two things happened yesterday that inspired me to write about this.  I received a notice that my grandfather has been moved to yet another nursing home, the fourth one in three years.  I also heard from a new friend who wrote me about how she is moving her mother into a nursing home for the first time.  She feels extremely sad and guilty about it and wonders how to break the news to her.

Breaking the news about moving them to a nursing home is one of the most difficult things a child could tell a parent.  The feelings of guilt and sadness can seem overwhelming.  Most elders who lived independent lives, in their own homes, on their own schedules, have a very difficult time accepting this.  I know I would.  They prefer their own homes, not to be dependent on others, and fear being forgotten by family and friends. 

Most often, elders enter a nursing home after being discharged from a hospital, when they can no longer be cared for at home, or as a last resort when the cost of homecare is not affordable anymore.  No matter what the circumstances, the nursing home option is not typically a desired one.  The advice on breaking the news to a parent is to do it with great empathy, sensitivity and planning:

·         Be upfront and honest with them about the situation.  Be transparent about the financial challenges or whatever other circumstances are making it difficult to continue their current mode of care. Communication is essential even if they are resistant to it.

·         Make them part of the process of researching care options if possible.  Share your findings with them, and demonstrate how you have exhausted all the options.  If possible, allow them to reach this conclusion on their own.  Maybe you can involve them in selecting the right nursing home.  My grandfather’s nursing home challenges have been mostly because of lack of personality fit.

·         The earlier you communicate the better.  They may be very angry and resistant.  The earlier they are aware, the more time they will have to adjust and mentally prepare.

·         Break the news with siblings or someone your parent loves and trusts as well.  It’s not easy doing this alone.  Having other loved ones around assuring them that they will always have visitors and will not be left alone will be very helpful.

With about 1.5 million people in nursing homes (according to U.S. Census Data), you are not alone in breaking the news.  It is also very normal to feel enormous guilt and sadness.  Here is a link that you might find helpful, "A Guide for Families: Making a Transition to Nursing Facility Life."   http://www.longtermcareliving.com/pdf/making_transition.pdf

eCareDairy.com blog is starting a new feature today which is the Sunday Caregiver News Roundup. We will review important news stories from the previous week with a quick summary of the article and a link to it.

Swine Vaccine Shortage Predicted – The Centers for Disease Control is predicting a shortage of swine flu vaccine. Only 28-30 million doses will be available instead of the 40 million predicted over the summer. The cause is delays from vaccine manufacturers.

Argument About Swine Flu Vaccinations Continues – Concerns about the safety of the swine flu vaccine has fueled debate whether or not people should get a vaccination.

Study Says Surfing the Web Can Help Slow Dementia – A University of California at Los Angeles (UCLA) study showed increased brain activity for seniors with dementia who spend at least one hour a day on the Internet. It appears that the old adage of use it or lose it is really true.

• Has the patient led an active life and do they want to continue to live one?
• Is a sense of humor important to the patient?
• Does the patient respond best to a proactive or reactive aide?
• Is the patient homebound or can they leave the house? If they are not homebound, do they want to go out regularly?
• Do they have special dietary needs?

• Fever
• Cough
• Sore throat
• Runny or stuffy nose
• Body aches
• Headache
• Chills
• Fatigue
• Vomiting (in some cases)
• Diarrhea (in some cases)

• Difficulty breathing or shortness of breath
• Pain or pressure in the chest or abdomen
• Sudden dizziness
• Confusion Severe or persistent vomiting

• Cover your nose and mouth with a tissue when you sneeze or cough. Throw out the tissue after you use it.
• Wash your hands frequently and use a hand sanitizer if you are not in a place where soap and water are readily available.
• Try not to touch you nose and mouth. This is a very common way to spread germs.
• If you are sick or think you are sick, stay home. Sick people coming to work or going to school are one of the most common ways viruses are spread.

• Children under 6 months
• Healthcare and emergency medical services personnel
• Persons between the ages of 6 months and 24 years old
• People ages of 25 through 64 years of age who are at higher risk for 2009 H1N1 because of chronic health disorders or compromised immune systems.

Today John and I attended the funeral service of a dear friend’s husband.  He was 71 years old and died in his sleep after spending a day mountain climbing.  His last words were, “I’m the happiest man alive.  I’ve just summited a beautiful mountain.”

He was in great shape.  He ran 20 marathons, and in 2008 which was his last, was the fastest runner for his age group. 

He was a devoted father and husband.  He engaged in his community.  He served our country in the Navy.  He spoke out against injustices.  He worked hard and made his family feel secure. 

Funerals are very sad occasions.  I don’t look forward to them.  However, I like learning new things about the person being eulogized by family and friends.  I also find myself moved by the way they lived their lives and the impact they had on others.

In this case, I find myself inspired to be a strong role model for my daughter, Avery.   Our friend’s husband was an inspiration to his daughters.  They attended the same university as him.  They were athletic like him.  They are pursuing their own dreams like him.

What touched me most about his daughters’ eulogy (they did it together) was how they said they felt secure knowing he would always be there loving them for the rest of their lives.

I’m relieved to be home.  I just returned from a trip to California where we went to visit my grandfather.   He was in the hospital early September because he refused to eat and became dangerously weak.  He was released after a few days once his health improved and got his strength back.  Since he is 90 years old and has dementia, John and I thought we should pay him a visit while he is still lucid and can recognize us. 

The visit was emotionally exhausting and tense.  You see, the care of my grandfather since his diagnosis with dementia caused a deep rift in my family.  His 3 children fought bitterly for custody of him and ultimately my paternal uncle won conservatorship.  Conservatorship is when a judge decides that a person cannot take care of themselves and chooses a person or organization, the “conservator,” to be in charge of their care.

This all happened 3 years ago.  My grandfather was living independently in New York City until several incidents such as a major car accident, declining health, and going after my father with a knife made the family realize he could no longer live alone.  Begrudgingly, he sold his home of over 40 years and moved to California to live with my paternal aunt until another living arrangement could be made.

Earlier in the summer I wrote about President Obama’s support of the late Senator Ted Kennedy’s long term care insurance bill as part of health reform.  While this proposal is an improvement over current programs, it does not provide the comprehensive solution families need to pay for the cost of long term care.

Caring for an elderly or infirm relative is both time consuming and expensive.  According the Department of Health and Human Services, the US spends over $200 billion per year on long term care services.  To give you an idea of what this means to a person receiving care, it costs between $18 and $29 per hour for home health care services and an average of $209 per day for a nursing home. 

Medicare provides only limited coverage for long term care so the US has a piece meal system to cover these services.  The most common ways to pay for care are:

1. Long Term Care Insurance – About 10 million Americans have purchased these policies.  While they help cover the cost of care, they generally cover less than 50% of the expense of long term care. 

2. Medicaid – This program that pays for long term care for people who are poor.  Many people divest themselves of their assets to become eligible for Medicaid coverage.  The rules vary by state.  To learn more about each state’s requirements visit the Financing Care  page of eCareDiary.com.

Today has particularly significance for me because my grandfather has dementia.  World’s Alzheimer’s Day was established 15 years ago by Alzheimer’s Disease International to raise awareness of dementia as a serious illness that will have significant impact on healthcare systems around the world. 

According to the 2009 World Alzheimer’s report, the number of people with dementia around the world is 35.6 million and expected to more than triple by 2050.  To be clear, dementia is an umbrella term for a group of symptoms that may affect memory loss, physical coordination, and/or moods and personality.  Dementia can affect people of all ages but is most common among the elderly.  Alzheimer’s is a neurological disease and is one of the most common forms of dementia.   

I can tell you from experience that dementia is not easy to detect.  In my grandfather’s case, I assumed some of the strange behavior at the beginning was a result of plain old age.  There was the time he got into a minor fender bender with his car.  Then there was the time he wore a stained shirt because he forgot to put it in the laundry basket. 

I’ve been debating whether or not to write about my 90 year old grandfather.  He has dementia and is at the center of some long and fierce family battles.  The story is really about my family, how it was once happy and unified and now split right in half.  It’s pretty ugly and bitter.  It’s a sad part of my life that I store away but tugs at me every day.

For some, becoming a designated caregiver to a parent, who is debilitated by disease and dependent upon you for support, could bring up lots of baggage.  If you have siblings, that baggage could be multiplied.   Add to that cultural traditions and expectations.  And to top it all off, add money and the high cost of long term care to the mix and you have a sense of the massive dysfunction in my family. 

This is the paternal side of my family.  We are Ecuadorian.  My grandfather emigrated to this country in the 1950’s when the United States recruited young men from Ecuador to help fight in the Korean War.  He later brought my grandmother (who passed away 11 years ago) and his 3 children, my uncle (the oldest), my father, and my aunt (the youngest).

I’ve decided to write about my family’s situation for a couple of reasons.  First of all, I think the story could benefit many families who might learn something positive from our experience.  They might be going through the same thing.  It might also benefit families who think this never could happen to them.  After reading our story, perhaps they can prepare and possibly avoid what we’ve been through.

End of life planning is getting a bad name because of the misinformation being spread about death panels and death books.  This is a shame because end of life planning is important and something we should all be thinking about for ourselves and our loved ones.

End of life planning is about ensuring you are in charge of medical decisions if you become mentally incapacitated and are unable to communicate.  While many people ask that life support be removed if there is no hope of recovery, a living will can require that all life sustaining procedures to be preformed in order to keep you alive.  This is your decision.

I experienced the importance of end of life planning first hand when my father, who had late stage Parkinson’s Disease, suffered a stroke which left him with little brain function.  After the stroke, we learned he had advanced cancer which had not been diagnosed.  While he was able to breath on his own, he was unable to feed himself, drink or perform any bodily functions without assistance. He was totally dependent on others to sustain life.

Fortunately, my father went through end of life planning after being diagnosed with Parkinson’s Disease.  He had a Living Will clearly expressing his wishes, designated a Health Care Proxy to speak on his behalf and established a Power of Attorney for his legal and financial affairs.  Having all this in place removed any doubt about his wishes and eliminated additional stress on the family.

As a caregiver and founder of eCareDiary.com, I am very excited that President Obama has decided to support a long term care benefit in Health Reform.  Based on my past experience in Heath Reform, long term care has rarely come to the forefront of the healthcare discussion, so this is a welcome development.

Senator Ted Kennedy has proposed a federal long term care insurance program which is included in the Health Reform bill. The Kennedy proposal would create an affordable long term care insurance policy that working individuals could purchase for as little as $65 per month.  This is a low premium considering an average long term care insurance policy for a 55 year old will cost over $100 month and will increase to over $300 for a senior citizen.  (For more information, here is the link to the bill)

The long term care insurance program would provide a benefit of $50 per day for home care and nursing home services.  While this is a modest amount, it will help many people stay in their homes when they become debilitated with long term illnesses.

End of Life Care is very personal, emotional and controversial.  It is a topic that many people are pressing in the debate on Healthcare Reform.

When my uncle suffered from a pulmonary embolism that left him in an irreversible coma, my mother was determined to keep him alive in hospice care.  He was breathing on his own, but was diagnosed as brain dead.  The damage caused by the lack of oxygen flow to his brain was too great.   She couldn’t bring herself to stop the intravenous feedings which would result in him dying within a few days.  So he was kept alive with daily feedings, baths and massages.  He lasted this way for 20 months until his death in May 2008.

My uncle did not have advanced directives which are documents such as a living will and healthcare proxy that provide clear direction of a person’s wishes should they become incapacitated.  He was only 56 years old and didn’t think about this type of preparation because he was relatively healthy beforehand.

I think most people are like my uncle and don’t think about getting these documents until they are in early stages of a long term disease.  My father-in-law is a perfect example.

One of the toughest conversations a caregiver has to hold is telling a loved one they need help caring for themselves.  I faced this discussion about 4 years with my father who was suffering from Parkinson’s disease at the time.

The process of determining the long term care needs of your loved one, breaking the news to them that they need help and setting up the services should be deliberate and done with care.  It is important that you provide the care recipient with the help they need without breaking their spirit.  I have outlined some tips to help you deal with this difficult process.

1. Can the Patient Perform Activities of Daily Living (ADLs)? – Activities of Daily Living are the self care actions we perform for ourselves everyday and include bathing, dressing, undressing, cooking, eating, walking, using the toilet and getting in and out of a chair or bed.  If you notice that your loved one has a problem performing one or more of these ADLs then he or she needs some form of long term care.   

2. Begin the Conversation Early– Chances are you will need to have multiple conversations with your loved one before they will agree to receive long term care so begin the conversation as soon as you notice they are having problems.  Remember the person you are setting up care for has been caring for themselves for most of their life so the idea of receiving long term care is going to be frustrating, frightening and humiliating.  It is important to be sensitive to their needs and feelings as you discuss the situation.