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:

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.

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!

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.

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. 

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.

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.

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.

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.