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Yearly Archives: 2014

Holiday Appeal Letter & 2014 Accomplishments!

ONE THING YOU CAN SAY ABOUT OUR ORGANIZATION IS THAT WE WALK OUR TALK.

This year Phyllis, our administrator, jumped into action to start a Share The Care (STC) group to support a neighborhood friend, suffering from leukemia, cope with massive rounds of chemotherapy before her (successful) bone marrow transplant.  “Andra’s Allies” is made up of friends from their local block association-a mini village of New York City neighbors-who were her key support for 10 months and continue their efforts as Andra slowly recovers.  As Phyllis points out, this was an eye-opening experience for all involved.

Phyllis Califano - STC Administrator

Phyllis Califano

“Though our block association is used to working together to improve the neighborhood, this was the first time we were called on to help a neighbor with a serious health issue.  So many of Andra’s Allies told me they were impressed that STC gave them so much flexibility and made giving their time easy.”

Our organization is unique in that not only do we educate people about STC but we also train other organizations, institutions, and faith communities to use our model to help their caregivers, care recipients and families.  This often means donations go elsewhere other than to ShareTheCaregiving.  So please know that we truly rely upon our supporters to help us keep helping others.  STC information is too critical not to share.

If you are part of an STC group, or are helped by one, please reflect on your experience and the value of having a ready-made plan to organize your group. We need you to TAKE ACTION to support our work generously this year.

Please consider a tax-deductible donation of $100$500 or $1,000 to help us grow and expand our reach. You can even make a significant donation to STC as a whole group.  Visit our website DONATE page that lists a variety of ways people can give.  EVERY DOLLAR COUNTS – YOUR GIFTS ARE TAX DEDUCTIBLE

You may donate online at:  www.sharethecare.org/donate or if you prefer by check.  If sending a check, please send to the address below and make it payable to:

ShareTheCaregiving/NCCI
C/o The National Center for Civic Innovation – 6th floor
121 Avenue of the Americas
New York, NY 10013-1590

We always welcome your STC group photos and stories for the website. These really do inspire others.   Also, please visit and  Like us on Facebook and Follow us on Twitter

We wish you and yours A Happy, Healthy Holiday Season.

With gratitude for your much needed support,

Sheila

Sheila Warnock
Founder & President

Please click here or scroll down to view our list of 2014’s accomplishments below.

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Donations are used to cover the cost of books, and creating, printing, and mailing our training and educational program materials.  We need funds to develop new educational materials.  People who contact us for support are pleasantly surprised to get a “personal” email or telephone call back; something of a rarity these days.
Currently our computers and equipment used for trainings and presentations are over 11 years old.  Since our focus is teaching and presenting (often travelling to do so) updated technology is critical.

Accomplishments2014

2014 ACCOMPLISHMENTS
STC's new home website: www.sharethecare.org
NEW STC HOME WEBSITE
 

Our greatest impact is made via our internet presence and in October we were proud to debut our brand new home website (see screenshot on the right). Now we can provide relevant information to each of our four audiences: caregivers and concerned friends, health professionals, faith communities and corporations.
Take a look. 


In April the NYC Partnership for Family Caregiving Corps participated in a Caregiving Conference at the NY Academy of Medicine. Over 300 people showed up in the pouring rain to learn more about NYC caregiving resources.
Sheila with Greg Johnson, Emblem Health and Dr. Robin Fenley, Department for the Aging, NYC
Sheila with Greg Johnson, Emblem Health and Dr. Robin Fenley, Department for the Aging, NYC

STC RESEARCH STUDY UNDERWAY
In the Spring of 2015 researcher Amy Hegenger plans to publish and present the results from her study of the STC model. She has collected feedback from past and present STC group members, caregivers and care recipients.
The goal of the study is to attain evidenced-based status for STC by proving the many benefits derived from using the model.

 

AWIS_ShareThe Care article
THIS TOPIC HIT A NERVE
The number of people living alone is growing rapidly and many have no family nearby (or none at all). A “created family” like STC can make all the difference in the world. (Click here or on the image to the right to read the article.)

 

STC MEDIA HIGHLIGHTS
© ShareTheCaregiving 2014 All rights reserved | Contact STC: info@sharethecare.org

Presidential Proclamation — National Family Caregivers Month, 2014

NATIONAL FAMILY CAREGIVER MONTH PROCLAMATION…………..THANK YOU; THANK YOU; THANK YOU TO ALL FAMILY CAREGIVERS

http://www.whitehouse.gov/the-press-office/2014/11/01/presidential-proclamation-national-family-caregivers-month-2014

NATIONAL FAMILY CAREGIVERS MONTH, 2014

– – – – – – –

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Each day, courageous individuals step forward to help care for family members in need, their quiet acts of selflessness and sacrifice telling a story of love and devotion. Across our country, parents and children, siblings and spouses, friends and neighbors heroically give of themselves to support those in their lives affected by illness, injury, or disability. During National Family Caregivers Month, we salute the people who play difficult and exhausting roles, and we recommit to lifting up these Americans as they care for their loved ones while protecting their dignity and individuality.

In the United States, more than 60 million caregivers provide invaluable strength and assistance to their family members, and as the number of older Americans rises, so will the number of caregivers. Many of these dedicated people work full time and raise children of their own while also caring for the needs of their loved ones. Caregivers support the independence of their family members and enable them to more fully participate in their communities, and as a Nation, we have an obligation to empower these selfless individuals.

My Administration continues to work to improve many of the resources on which caregivers depend. The Affordable Care Act invested in programs that expand home and community-based services. To lift up a new generation of service members — our 9/11 Generation — we are fighting to ensure those who care for them have access to the support they need, including financial assistance, comprehensive caregiver training, mental health services and counseling, and respite care. Many caregivers rely on workplace flexibility and reasonable accommodations, and this year my Administration held the first-ever White House Summit on Working Families to develop a comprehensive agenda that ensures hard-working Americans do not have to choose between being productive employees and responsible family members. And next year, we will host the White House Conference on Aging, which will focus on the needs of older Americans and those who care for them.

Not only this month, but every month, let us work alongside our Nation’s caregivers and make certain they are able to provide the best possible care for their loved ones for as long as necessary. Together, we recognize those who place service above self, including the women and men looking after our veterans. By offering them the same comfort, social engagement, and stability they bring to others, may we remind them that they are not alone.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim November 2014 as National Family Caregivers Month. I encourage all Americans to pay tribute to those who provide for the health and well-being of their family members, friends, and neighbors.

IN WITNESS WHEREOF, I have hereunto set my hand this thirty-first day of October, in the year of our Lord two thousand fourteen, and of the Independence of the United States of America the two hundred and thirty-ninth.

BARACK OBAMA

ADVICE FROM THE PATIENT

Peggy Chun a woman of great courage, creativity, humor and gratitude continues to inspire everyone she meets. Using her Erika Computer, she painstakingly wrote the following heartfelt advice to ALS patients and their families.

“Living with ALS”
Written by Peggy Chun for the MDA ALS Seminar in Honolulu, Hawaii
May 20, 2006

Aloha dear fellow ALS patients, treasured caregivers, medical staff, and loving family and friends,

First I would like to wish a special mahalo to MDA and to Queens. I’ve been a repeat customer often during the past four years and I am grateful for the compassionate care I’ve received throughout my battle with ALS. It’s easy to criticize the medical profession and our hospitals, but I can personally say that I have no complaints…except the food!

Because of Dr. Dan Davis, I have the good fortune of weekly video conference doctor visits. With a caregiver here I am able to receive a full examination through a computer and video camera. Imagine the effort this saves patient and caregiver alike. We have been able to catch pressure sores, rashes, colds, and even pneumonia early and treat successfully. Thank you, Dr. Davis and Queens!

Another expression of gratitude goes to Cory lee, owner of Health Care Alternatives and her staff. From the beginning I have been given the finest nursing care possible. A nursing agency of this caliber is essential for a vented ALS patient.

This is my fourth year dealing with perhaps one of the most challenging diseases for both patient and caregiver. It is a disease also dreaded by the doctors who can only feel frustrated by the lack of effective treatment, the FDA and our medieval government policies regarding stem cell research. I believe this gathering can offer hope and needed information to all faced with this, and other, neurological diseases. What every one of us needs is hope and today I wish to bring you just that by sharing what I’ve learned during this journey living with ALS. Note I say living with, not dying from, ALS.

When the diagnosis of ALS comes, most patients and their families are struck with fear and confusion. Unless a family member or friend has been hit with ALS, most of us have no idea of what is happening. Having experienced ALS with three family members, it still came as a shock, but I knew what to do. I called MDA. Immediately, they put me in touch with their ALS clinic at Castle Hospital. The visit included genetic testing. Your gene that turns on ALS is extremely important for all the research going on now. Dr. Kimata is brilliant and compassionate.

I have had the tremendous good fortune of being blessed with a loving family and supportive friends. I also have my health insurance with HMSA and they have been a caring and supportive provider. As I look back, I’m so glad that I considered health insurance important! Even if you lack some of this support, MDA is able to provide a wide range of information and assistance.

The sooner you accept that you will need assistance, the better things will be for you and your family. This brings me to a problem I’ve witnessed often in my illness – family secrecy and shame. If you as caregivers, and you, the patient, want to live a healthier life during the time we have left, you must learn to let go control and learn to trust that others can take care of you – EVEN IF YOU ARE SURE YOU CAN DO A BETTER JOB! Secrecy only makes the ALS more difficult to accept. It excludes friends and even people out there that you haven’t met but who want to help. It creates loneliness and depression, which in turn, I believe, hastens death. Please try to open up to all who want to help.

That being said, there is another unforeseen situation that will most likely unnerve you and your family. Some of your closest friends and even family members will not come by. You must understand and accept that they can’t deal with their emotions surrounding their perceived loss of you. It could be that they have not had to face the death of someone close or that their loss is too painful to imagine. I ask that you accept them and continue to love them. They don’t know what to do. You may receive help in indirect ways so know that it stems from their own pain and grief. I know. When my mother was dying of ALS, I couldn’t bear to be with her. I couldn’t face that she would not be with us. I had flown home not knowing the seriousness of her condition. There’s that family secrecy I spoke of earlier. She died six days later. The agony and denial surrounding my twin sister’s death from ALS kept me from making my last days with her as meaningful as they should have been. I understand denial. Accept it in your loved ones and try to recognize it in yourself.

Speaking of caregivers, they are the gems of humanity. How could we possibly survive without them? Caregivers are motivated by compassion. As an ALS patient I am grateful for the incredible care I’ve received during the past four years. Caregivers need TLC. I’ve sometimes been so blinded by my own problems that I’ve failed to recognize burnout in my caregivers. ALS is so intensive for those who take care of us. Think about it…they have to be our voluntary muscles! We are like newborns, totally dependent on man and machine to stay alive. Thank your caregivers!

In February 2003, we received a book from my brother Matt, titled Share The Care™ by Sheila Warnock and Cappy Capossela. My sister Camille, a realist, my dear friend Martha Torney, and my daughter-in-law Kimi, put together an initial meeting of friends. Over the years, this list of friends, which started with 20 or so, evolved to a list of around 100 people who would become “Peg’s Legs”. Suzanne Maurer, magically schedules three four hour shifts a day. Shifts include an A person, trained in trach care and other nursing skills required, and a B person who assists the A by turning, helping with Hoyer Lift, and if time permits, indulging me by wrapping millions of gifts, wearing costumes for any occasion, making puppets, helping me paint, and assisting with the computers. Very few of these caregivers are trained nurses! We train them, many of whom are brand new friends. Before the vent, a regular group took me to the beach every Friday for a workout and lunch. They arranged for a beach ATV wheel chair to which they transferred me in a hammock made from a parachute! This Share The Care™ group has made it possible for me to lead a very full life. I urge you to get a copy of the book now. It will save your family.

MDA offers a monthly support group to assist both caregivers and clients alike. I bring this up now to again reassure you that comfort and support are there. Just sharing information makes dealing with the unknown doable. MDA offers grounding to the victims of ALS and to their family and friends.

While I am not a doctor and am not qualified to give you any medical advice, I would like to share some of the ways in which we’ve managed this illness and its various complications. It is important to deal with the physical changes of your progression on a proactive basis.

First, for me, a cane was needed. I accumulated quite an interesting set of canes! Next, came my cherry red walker with wheels. That walker went everywhere…New York, Oklahoma, San Francisco, the Big Island and Kauai. Well traveled, I’d say. By the way – do you know that there are websites devoted to travel for ALS patients?

Next came the day I broke my foot which permanently put me in a wheelchair. Again, MDA helped pay for part of the cost. Up to the time I broke my foot, I wheeled around on a yellow scooter, supplemented by the walker. MDA can help you locate all these resources and assist in funding. I’d like to note that we use both Five Star Transcare and Hawaii Patient Transports to get me around town. Both companies are reliable and affordable and have caring and sensitive staff.

This next suggestion will save your caregivers’ backs and enable you to get up for the activities you need, both for mental and physical health. I highly recommend getting a Hoyer Lift! Your insurance may cover this expense. Using a hoyer keeps your joints flexible because you are bending every joint when being turned and lifted.

In the early stages of ALS, especially with upper body weakness first, it may be helpful and necessary for you to get a sleep test. This will enable you to qualify for a BiPap machine which, although unattractive, assists your sleep at night. You will be amazed at how much better you will feel, even after the first night. For some of you, the BiPap will give you the first good night’s sleep in months or years. You cannot qualify for one without the sleep test. Queens Medical Center has a new restful sleep test area.

Next, I urge you to get an air mattress. Ours is a Hill Rom and because of it, I have never had a bedsore! Although I also give credit to my nurses and Peg’s Legs for this – we cannot survive by air mattress alone! Unfortunately, most insurance companies will not cover an air mattress until you get a stage two bedsore which is outrageous.

It was about March of 2003 that my right hand, my painting hand, became paralyzed. Immediately, I started using hand and wrist braces to prevent my hands from atrophying in a curled position. I cannot stress how important it is to use these braces early! Once the hand curls it is extremely difficult to bend them back with physical therapy. Also the unnatural curling will cause pain later in upper arm muscles.

As soon as you can’t walk it’s time to get boots to prevent foot drop, another situation which can be avoided. I have minimal foot drop and no heel sores thanks to religiously wearing these foot braces that hold up the foot so that the heel touches nothing but air. Eventually, some, but not all of you may begin to experience pain, especially around the stoma area if you are on a ventilator. Also muscle cramps and pain in the buttocks, an area I refer to as my “sit down” bones. However, I have rarely experienced cramps, because since my diagnosis I have used a “chi machine” which is also called a stress reliever. I rest my legs on it and it gently moves them back and forth. I use it all night and I believe that the movement has not only helped prevent cramping, but also bedsores. The one we have is an “Evergain Stressbuster/Aerobic Exerciser”.

Back to pain…don’t be a martyr! Of course I have no ability to give medical advice and we all react differently to different medications. However, if you need pain management, please talk to your doctor. I know strong pain medication is controversial but if it allows me a more comfortable and, perhaps, a longer life, I personally think it is worth it.

As you begin to lose your ability to communicate, I recommend using a spell chart like the one I use (also called and “eye-transfer system”). We have tried several variations and have found this one the easiest and fastest. As your facial muscles weaken, your jaw may drop enough to prevent you from completely closing your mouth. You may also bite the inside cheeks. Ask your caregivers to be aware of your jaw drop. We designed a chin strap that keeps the jaw aligned. I am more comfortable when my mouth is closed airtight. If my mouth is open too long, the inside dries out and causes the saliva to burn. It can be quite painful. I don’t think we’ve come up with the optimum chin strap but we are trying.

It must be noted that when I lost the ability to move my jaw muscles, I became almost deaf, not realizing that my eustation tubes had collapsed. We discovered that the collapsed tubes prevented the eardrum from working. Good news! The doctor cleaned out the wax and liquid and inserted tiny tubes into the eardrum. Immediately it felt like everyone was shouting at me!

It took almost three years to accept that perhaps this disease was progressing. I was furious about my fallen brows! This was also in the period of time when even my jaws had weakened so much that I couldn’t paint any longer. I started using the ERICA computer from Eye Response Technologies in May, a few months later. What a release it was to type and paint (digitally) again. How we take communication for granted.

Today I feel that I have a full life, treasuring the time with my family, enjoying visits from friends, painting with my ERICA and with brain waves, directing art projects, and writing. At this stage of ALS, I’m fully paralyzed, even my eye lids don’t shut anymore but with special eye drops and protective gels for sleeping, my eyes work just fine. Again, we hit a bump and we find another solution!

ALS will take you and your family on an emotional journey from day one. It is easy to be seduced by quick fixes and medical quacks. I spent a small fortune unwisely in my first year trying protocols that simply couldn’t cure ALS. The money spent on a desperate search is regrettable. During the first twelve months of this disease I did some things that were rather stressful to my family. I also threw care to the winds spending money foolishly, not thinking about what a financial strain this illness would be on me and my family. I wisely turned over my finances to my daughter-in-law and to my son, who helped me to get things straightened out and start planning for the future.

I tell you some of these stories to illustrate how important it is to face your gradual loss of control and to be proactive about the changes you know are coming. I say this with great hypocrisy because I really didn’t fully acknowledge my ALS until, fully paralyzed, I awoke on February 24, 2005 to what I refer to as The Day My Eyebrows Fell.

Also, be sure to have your legal affairs in order. Right after diagnosis I contacted an attorney and within a week I had an updated will, trust, and living will. I also met with close friends and over a very good wine and dinner; we planned a funeral and my own list of “Who Gets What”. I cannot tell you how easy this will be on your family.

Many of you have probably have not yet reached the decision to go on the ventilator. It is a difficult situation at best. I am not able to advise you. Today I can only hope to help by telling my own story. If you go on the vent, use your additional time while alive to live, not vegetate in depression. We have the benefit of time.

This is the time to start recording your thoughts and your own philosophy by digital video, audio tape, and writing or typing. I cannot emphasize how important your words will be for your loved ones. On the day of my mother’s funeral, we found a journal she had kept during her illness. It is a family treasure because it gave us insight about someone we dearly loved, but were too young to know her as adults. So try to complete letters and tapes before you lose your ability to write or speak and then continue to write with assistive technology.

This gift of knowing that death may be close should be spent dealing with the most important issues facing any family. I consider those to be confronting anger, denial, expressing love and finding peace. We are able now to communicate as a family but it took almost four years to get to this level because of my own unexpressed anger and denial. How difficult it has been for my family and friends. I was so engrossed in my own fear and anger that I became defensive and confused by the reactions of the people around. But, with the guidance of Clarence Liu of Hospice, we’ve broken through. I’m still ambivalent about dying but I’m not fearful. Besides, I have so many projects to work on that I’m reassured of a year or two! The Creator has a sense of humor!

Remember that ALS has given us the GIFT OF TIME so please use it well. And make the choice to LIVE WITH not DIE FROM your illness.

Thank you,

Peggy Chun

To see her beautiful art and read more from and about Peggy please visit Peggy’s Website
http://www.peggychun.com

STC Summer 2014: Appeal Letter

Dear Share The Care™ Supporters,

 A few days ago I received an email from the sister of a woman whose caregiving story was recently profiled inPsychology Today‘s blog, The Dance of Connection.  A link to that story is provided below, but I wanted to share a portion of the message I received as a reminder of the impact STC has on people’s lives.

 “Many thanks to you for Share the Care that completely transformed Lynn’s life and mine. Because of it, we were all empowered to focus on what was needed and simultaneously given a sturdy foundation to ground us during a time of terrible upheaval. In addition, so many unexpected blessings came to us during the absolute worst of times.  I am so very grateful for your work.”

 “Grief shared is grief halved.  Joy shared is joy doubled.” (a quote on one of Lynn’s last Christmas Cards)

Everyday, the need for STC grows as more people live alone without family, the Boomers age rapidly, and health care becomes increasingly complicated.  To better serve those who turn to us for help, STC™ has been working hard behind the scenes on some key advances and we are delighted to report the progress over the last 6 months:

  • A long-awaited evaluation of the STC model is underway by a researcher from the State University at Albany. The study is intended to establish an evidence-base that will support the continued growth of the STC™ program to help many more caregivers.
  • We are in the final stages of building a new home website that will address the specific needs of our varied users: caregivers & concerned friends, health professionals, faith communities, and corporations and working caregivers.  We plan to highlight examples of successful STC™ programs that blossomed following our STC Trainings.
  •  New media attention:
    • The Wall Street Journal MarketWatch (Click to read it.)
    • The Association of Women in Science magazine for an article I wrote “Who Cares For The Person Who Lives Alone?”
    • eCareDiary recent interview (Click to read it.)
    • Psychology Today‘s blog-The Dance of Connection:  “The Saddest Happiest Most Inspiring Boring Cancer Story” about woman with TWO STC™ groups in two states. (Click to read it.)

We are proud to say that as a volunteer-driven organization, we have been able to direct almost all of the funds raised directly to benefit caregivers who turn to us for help.  We make every effort to take the time to make a personal connection with people who contact us and/or are willing to share their stories.  All STC™ services and materials – other than trainings and workshops provided to organizations – are provided without charge.

 To continue to provide the personal encouragement and support STC is known for-

WE REALLY NEED YOUR SUPPORT TO KEEP THE MOMENTUM GOING.

Click here to donate online or if you prefer by check. We also invite you to donate in honor of a friend or loved one.

Please make checks payable to ShareTheCaregiving/NCCI and send to:

ShareTheCaregiving Inc.

c/o The National Center for Civic Innovation – 6th Floor

121 Avenue of the Americas

New York City, NY 10013-1590

Of course, YOUR GIFTS ARE TAX DEDUCTIBLE.  Please include your name and address so we can properly acknowledge your gift and, if you would like to be kept informed of STC news, your email address.  As always your stories and photos for our website are always encouraged and welcome.

With gratitude from all of us at ShareTheCaregiving.

 Sheila

Sheila Warnock Founder & President

www.sharethecare.org info@sharethecare.org

The Dance of Connection

Sheila recently received an email from the sister of a woman whose caregiving story was recently profiled inPsychology Today‘s blog, The Dance of Connection.  That story is reprinted here – it is a reminder of the impact STC has on people’s lives.

Rescuing women and men from the quicksand of difficult relationships.

The Sandwich Generation: Caring for children, elders and yourself

sandwich-generation1

by Julie Warnock Utano, Associate Executive Director, AWIS

(Published in the June Issue of awis – p41 – click to download/read this article as a PDF)

For me it all began 2009.  My mother had recently been diagnosed with hypertrophic cardiomyopathy and refused to take the medicine she had been prescribed. Unfortunately, no amount of yelling, screaming, or cajoling convinced her to heed the doctor’s orders. On July 22, 2009, one day after meeting with the surgeon who was going to repair her heart, she passed away.

My mother’s sudden passing was hard enough to cope with, but on top of everything, my father completely lost it. He had been acting strangely for months prior to her death, forgetting dates and events and seeming out of it and I later found out he had been diagnosed with early onset dementia four months prior to my mother’s death. My mother, not wanting anyone to know, had attributed this odd behavior to a variety of causes including the side-effects of medication and hearing loss.  Her sudden death sent my father into a state of shock and accelerated his dementia. In an instant, I became a member of the “sandwich generation” – a generation of people who are taking care of ailing parents while also raising a family.

sandwich-2I’m not alone in the sandwich generation. Almost half (47%) of adults in their 40s and 50s have a parent over 66 and are raising or financially supporting a child. 15% of middle-aged adults are providing financial support to both a parent and a child. While the first statistic has not really changed over the years, the financial burden of caring for multiple generations of family members is growing. One in five of middle-aged adults provide financial support to a parent aged 65 or older.(1)

At the time of my mother’s death my children were 15 and 13 and I was working full-time. While my husband and children tried to help, I still bore the brunt of the driving, cooking, laundry and cleaning at home. With my mother’s passing, I added caring for my father to the load. It was a rough road initially, and at every crossroad with my father’s health today, it still is.  Here are a few tips if you find yourself in my shoes.

Prepare.  There is a good chance one of you reading this will find yourself taking care of an ailing parent or loved one in the next few years. There is no way to be prepared for the emotional shock of a sudden illness or disability, but you can be prepared.

According to a MetLife Institute study in 2011, women who take time off or quit work to care for a loved on lose an average of $324,044 in lifetime wages, pension and Social Security.  Not having a long-term strategy can be costly for your family and affect your own retirement plans.

What type of insurance policies do they have? Do they have long-term care? If they don’t, see how much it will cost to get it. Long-term insurance has been a life-saver for my family. Make sure you have a list of the policies somewhere.

How do they feel about nursing homes? Do they have enough money to cover a nursing home if it’s ever necessary? Research what expenses Medicare will cover. You may want to talk to them about setting up some type of account to cover expenses as expenses add up very quickly.

Make sure they have a Durable Power of Attorney and a will. Having Power of Attorney has been very important in dealing with my father’s declining mental state. Even if the person you care for has full cognitive function today, that can change suddenly, or over time, and you want to be prepared regardless of the situation. There are a lot of scam artists who prey on senior citizens, and if your parent or loved one is in a state of mental decline you want to have some control over their finances.

What type of funeral would they want? Under what circumstances, if any, would they want a DNR (Do Not Resuscitate) order?

If they are in a retirement community in another state, what will your plan be if one, or both of them need help.  Will you need to move them closer to you or a sibling? It’s never an easy conversation to have, but have the discussion and make sure you know where they keep their papers, and other critical information. I knew what my parents wanted and what they didn’t want and it made some hard choices a bit easier.

Research.  There are lots of organizations out there that can help you. I know that the Alzheimer’s Association helped me tremendously while I was researching my father’s Lewy Body Dementia. Here are a few helpful sites you should consult:

www.eldercare.gov – connects you to community services that can help
www.benefitscheckup.org – helps you find benefit programs for medication, food, etc..
www.medicare.gov – official site for all things Medicare

Don’t try it on your own.  I was the executor of my mother’s estate, and because my father was unable to do much, I had a lot of responsibilities. Initially I felt as though I had to pay all of the bills, go grocery shopping, take my father to all of his doctor’s appointments, submit insurance papers, do taxes, etc… on my own. It was exhausting.  The Elder Care website (www.eldercare.gov) has a lot of resources and can help you find the services you need – from meal delivery, transportation to doctor’s offices, and legal assistance.

I am lucky to have a good network of support between friends and family, but there are also lots of caregiver support groups for us members of the sandwich generation. They are great places to meet other people in your area who are dealing with the same thing. Support groups can be found at churches or synagogues, senior centers, hospitals, and disease-specific organizations (the Alzheimer’s Association has them, for example). AARP also has a caregiving support hotline  (877.333.5885) and www.eldercare.gov has a list as well.

Everyone’s situation is unique to their family and we each need to do what works best for us. I’ve made mistakes along the way, sometimes I’ve learned from them, sometimes I’ve made them twice. But I do the best I can, and that’s all anyone can do.

Make friends with your loved ones’ neighbors.  When there was a storm that resulted in power loss, we had several neighbors we could call on to send someone over to my Dad’s house to make sure he was okay. Sandwich3

Forgive yourself. This is something my sister and I both continue struggle with. Our motto is, “We do the best we can.”   This is our mantra when one of us has forgotten to do something or when one of us feels guilty because my father is sad when we leave. We say this to each other at least once a month.  You never feel that what you do is enough, but it is. Each of us does what we can in these situations, and it’s OK.

Stay organized. I have a big filing system for my father’s papers with bills, insurance documents, etc. that I keep at my house.  It helps me stay on top of things (most of the time). I also have set up reminders to track when bills are due so I don’t forget.

Time management. Time management is a tough one. Flexibility at work is very important, and another reason why it’s so important that organizations have family friendly policies for their employees. Family friendly work policies not only provide organizational understanding for parents, but also for caregivers. In the first few years, I visited my Dad two to three times a week. I was lucky that I was able to come in an hour or two early to make up time when I needed to take my father to appointments or go to his house at lunch time to deal with the crisis of the day. Having that kind of flexibility at work was very important to me. That being said, when I got home I still had to drive children to practices, make a dinner etc. I was frequently emotionally exhausted and on more than one occasion, short-tempered (add a few hot flashes to the mix and it wasn’t too hard to have a menopausal meltdown). It is hard. There is no way for it not to be, and it’s okay to have a meltdown (or two) in the process.

Make time for yourself. This is easier said than done, but it’s important to practice. Don’t let your situation define who you are.

Home Care versus Nursing Home Care. It’s a very tough decision. We kept my father at home as long as we could using an elder care group that came to his house and did light cleaning and cooking for him. We had two women who came to the house in shifts – one spent the bulk of the day with him, and one spent the evening with him. It gave us piece of mind that he was looked after throughout the day, and was receiving care and nutritious meals. It was a great alternative for us and was financially manageable as well.

The decision to move him to a nursing home was made about a year and a half ago when my dad started wandering outside in-between the caregiver’s visits. It was amazing how much trouble he could get into in an hour! Once he even escaped from a doctor’s office. We were lucky that he had long-term care insurance and a government pension, so we were able to put him in a facility that specializes in dementia and Alzheimer’s care and is set up to keep patients until the “end of life” (an important distinction: some facilities will force you to move your loved one to another facility as they physically decline, sometimes even weeks before death). I also felt guilty about not having him live with me, but I made the choice that worked best for my family. I have the utmost respect for those who move their parents into their own homes to provide care.

Everyone’s situation is unique to their family and we each need to do what works best for us. I’ve made mistakes along the way, sometimes I’ve learned from them, sometimes I’ve made them twice. But I do the best I can, and that’s all anyone can do. My father is safe, clean and comfortable. He laughs when we visit and I will miss him tremendously when he’s gone from this earth.

Pew Research Center, PewResearch Social & Demographic Trends,Report on The Sandwich Moving.  (1) Generation, 1/30/13

STC on the Wall Street Journal Marketwatch

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An article on the Wall Street Journal:
Online: http://www.marketwatch.com/story/for-the-best-retirement-build-a-social-portfolio-2014-05-21
Click here to view as a PDF

Article by Elizabeth O’Brien
Reporter, MarketWatch

From: Page 2 of the article:
A disparate group of friends can also cohere into a powerful caregiving unit in times of need, said Sheila Warnock, founder and president of the New York City-based nonprofit organization ShareTheCaregiving and co-author of the book, “Share the Care: How to organize a group to care for someone who is seriously ill.” Years ago, Warnock, then an advertising creative director, and a friend formed a group to care for a sick mutual friend, a divorced woman with two teenage children and a serious cancer diagnosis.

The caregiving group of 12 members came from all aspects of the friend’s life, and most were strangers to one another at the beginning. Not all were close friends of the sick woman. Yet they organized into a unit that took care of their mutual friend for 3½ years, until her death, using a system of rotating “captains” that allowed everyone to contribute in different roles—going to medical appointments, cooking, cleaning, and even organizing a daughter’s wedding—without any one caregiver feeling overwhelmed.

Warnock has some advice for those who live alone and prize their independence, a group whose ranks are growing. Today, a record 27% of U.S. households are compromised of just one person, including those of nearly 12 million Americans 65 and over, according to the Census Bureau, up from nearly 10 million in 2000.

One reason why caregiving can feel overwhelming, both for the giver and the receiver, is because as a society we don’t often experience it until the need becomes overpowering, Warnock said. “Back in the pioneer days, if you didn’t have your neighbors, you wouldn’t survive,” she said. “These days, you walk down the street and everyone has their face in an iPhone.”

So make like a pioneer and practice giving and receiving help, Warnock advised. Go shopping for an elderly neighbor. Ask friends to come paint your apartment. That way, it won’t feel so foreign when you’re in a position to really need the help—or to give it.

Time spent cultivating your network is one of the best investments you can make. A diverse portfolio will give you something to live on in retirement, but friends will give you something to live for.

For the best retirement, build a ‘social portfolio’ – MarketWatch

 

Important STC Research Study

CALLING ALL STC GROUPS PAST and PRESENT

YOUR INPUT IS NEEDED FOR AN IMPORTANT RESEARCH STUDY

STC SURVEY CLICK ON THE LINK THAT BEST DESCRIBES YOUR ROLE

Your Role

Caregivers/Family

Group Members

Care Receivers

The survey should take less than 10 minutes and your responses are confidential.

Amy Hegener, LMSW, a doctoral student from the University at Albany is conducting this evaluation of Share The Care (STC) to establish an evidence-base that supports STC as a best practice model for innovative caregiving strategies.  If you have questions on the research study, you may contact Amy directly.

If you would like more information and the printable version of the survey as a PDF, please click here to access it.

THANK YOU.

DO YOU KNOW OTHERS WHO COULD PARTICIPATE IN THIS STUDY? CLICK HERE: to download a PDF invitation to participate in Research Study for them.

Caregiving Summit – Name it; know its many faces.

eCareDiary Interview below took place at the Emblem Health Family Caregiving Summit.(Event photos below.)



The subject of “Who Takes Care of The Person Who Live Alone” was addressed in depth in an article Sheila wrote for the Association For Women In Science Magazine.
Click here to read the article
.

EmblemHealth’s NYC Partnership for Family Caregiving Corps
was in full force o
n April 30th at the NY Academy of Medicine for the Caregiving Summit – Name it; know its many faces.

The turn out was fantastic…even in a downpour!
Click on an image below to see it larger.

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NYAM4

Who Cares for the Person Who Lives Alone?

An article by Sheila Warnock, American Women in Science Magazine (AWIS)
Spring Issue, Vol. 45

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If you live alone, you have probably had thoughts flash through your mind like “If I fell in the shower and hit my head, how long would it take for someone to miss me?” or “What if I were seriously injured or ill… who would take care of me?”

Click to read or download Sheila’s article.
Click to view the eCare Diary video interview on this topic.