When an emergency arises, are you, patient or caregiver, prepared to visit the Emergency Room?



“a sudden, urgent, usually unexpected occurrence or occasion requiring immediate action.” (Dictionary.com)


By definition, an emergency steers us away from our routine and forces us to alter our anticipated course of action.  Can we count on our level-headed caregiving thinking then? How can patients prepare themselves for a visit to ER?

When my father suddenly told my mother one early morning that he needed to go to the hospital, my mother simply said, “Ok.”  She proceeded to get dressed, got her purse and headed out to the car on their driveway. Surely, the only thing on her mind was getting Dad to the ER as soon as possible – talk would have to come later.  Dad was having what turned out to be a 5-bypass heart attack.

When he again announced that he needed an ambulance at 12:30am while I was visiting my parents 20 years later, we knew better than to question him.  My mother and I gathered our purses and car keys, then we followed the ambulance to ER.  Mother and I talked about Dad’s hip pain worsening and hoping that the medical staff would find its cause, get rid of it and release him.  We talked about his recently diagnosed multiple myeloma and about his failing kidneys, but not about much else.  It was, by that time, after 1 am and we were running on adrenaline and coffee.

Upon being examined, my father was asked what medications he was taking, dosages, symptoms and a myriad other questions that Dad could mostly answer himself.  Mostly.  Dad had taken his health seriously after his heart attack and remarkably, maintained a sharp mind through medical emergencies.  None of us, however, remembered medication strengths very well, as he was taking about 14 pills per day then.  The ER staff would have to make do with our faulty memory.

Today, this scenario, as well as complications and dangers posed by giving the nurses inaccurate medical information, can be avoided by preparing ourselves for a visit to the ER before we actually have to go.  We can also have forms filled out, doctors (with their contact details) and medications listed, and other necessary information ready for the ER staff to better help the patient once he or she arrives at the hospital.


Dr. David Seaberg, President of the American College of Emergency Physicians (ACEP), has implemented a program to encourage families to prepare themselves before visiting ER.


In the event that the patient cannot provide a complete medical history, arrives unconscious, or is unavailable when a child needs treatment, the forms below can be found in the website and filled out prior to arriving at ER.

“These forms are here to help you get the care you need in a life-threatening situation.”

  • Cell phone identification
  • Consent to treat form
  • Emergency health info for children with special health needs form
  • Medical history form


Cell Phone Identification  –  ICE

“ACEP recommends that people with cellular phones add “ICE” (In Case of Emergency) entries into their cell phone address books. This stands for “In Case of Emergency.” Medical professionals recognize this acronym and use it to notify the person’s emergency contacts and to obtain critical medical information if a patient arrives at an emergency department unconscious or unable to answer questions. This can give doctors and nurses vital information to provide better and more effective care.

It is recommended that people save at least two numbers and be sure that both people are familiar with their medical history. They can be saved as “ICE — 1” and “ICE — 2” or with names such as “ICE —  Mom.” In all cases, the “ICE” designation should come first.”



ER101.org has additional information on what to expect once you arrive at ER, which can calm your nerves and reduce worry.  Information includes:

  • Where you should go
  • Check-in
  • Medical tests
  • Admission to the hospital
  • ER checklists



Dr. Seaberg answers some questions on preparing for a visit to ER in a video below.



Do take time to fill out the forms listed above and enter your ICE into your cell phone today.  Better to be ready for anything – we just cannot predict when those emergencies will make an appearance.

Be prepared before you go to ER!


The links below bring caregivers medical resources and health information to keep up with the latest news and developments.  They also render a place to meet and to exchange ideas with other caregivers and patients – people who understand your circumstances and who can provide welcome support!




SCPharmacist – trusted healthcare resources, prescription drug savings tlps

Health Alerts / Advisories – alerts, health info, research

Health Canal – medical news

Dana – brain research & information

Vascular Web – Podcasts, resources, research for patients, families, students & professionals

DrAnnBeckerSchutte – tools for emotional, physical health

Spina Bifida Association of GA – support to live more fulfilling life

Let Life Happen – cancer & abuse survivor bringing hope

Ability4Life – caring for aging parents: products & information

Best-Endings App – preparing for our end-of-life

Best-Endings – planning now for our end-of-life

Stardust Ashes – scatters loved one’s ashes into stratosphere


COMMUNITY & SUPPORT: find other caregivers, families, patients

Ben’s Friends  – support & information, communities of people with rare diseases

The Coffee Klatch – support & education for families of special needs children

Seize the Days – celebrating cancer patient survival life with inspirational stories

Inspire – online health & wellness communities for patients & caregivers

Groups@Care – join / form groups with similar interests



La Via Sana – support for people dealing with mental illness

Soma Vida – work / life balance, wellness

Judy Kegg at Floating LotusWatsu & massage therapies

Hill Country Healing Arts – Watsu & massage therapies

Cure for Space – uncluttering & organizing homes


In the midst of the buzz about Rare Disease Day throughout February, I came across JC Colyer on Twitter. He has been diagnosed with Ataxia.  Curious to learn about this rare condition, I asked him if he would like to talk about Ataxia so that we can learn about it. Graciously, he agreed to contribute the post below.  Not only did he provide details about Ataxia, but he provided a key ingredient to coping with any major challenges in life: adapting your lifestyle!  Thank you, JC!


Rare Disease Awareness Day was held worldwide on February 29 this year, an effort by NORD [National Organization for Rare Disorders] to educate the general public about rare diseases.


“NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.”


What is the purpose of increasing awareness?

  1. Learn about symptoms
  2. Familiarize medical community with disease
  3. Recognize symptoms early so diagnosis can be made & treatment can begin
  4. Raise funds for / encourage research to find successful treatments & cure
  5. Develop efficient medications for that disease



Adapting your lifestyle when there is no other choice: “Diagnosis Ataxia”

by JC Colyer


My name is John Colyer, since my early teens I’ve had the nickname, “J.C.”.

I’m about to turn 50, and would have never expected to be in the situation I am in:  for the last 10 yrs. I’ve had a slow but steady downfall caused by a rare disease known as “Cerebellar Ataxia”.  It causes cerebellar atrophy, which means the part of my brain, called the cerebellum, is shrinking. I’ve had 3 MRI’s, multiple genetic and non-genetic blood tests and have seen numerous Dr’s and Specialists. I didn’t recognize a problem till friends and co- workers brought it to my attention. Ataxia causes your balance, coordination and speech to deteriorate. It makes you look and sound drunk, which is ok to people when you’re young, not so much in your 40’s. I had a fall in Jan. 2010 and broke my left knee cap and had 2 surgeries to repair it. While recovering in bed, I found BEN’SFRIENDS.ORG, a support network for people with rare diseases. I joined their Ataxia support sites,

American Ataxia Networking (http://americanataxianetworking.ning.com/ ) and

Living with Ataxia (http://www.livingwithataxia.org/ ).

I had never had contact with another person with Ataxia before then; it was the first time I felt it was real and not in my imagination. It became a life line for me, a safe place to vent with others who understood my struggles. I use a Quad cane for stability when I walk, and stress and fatigue magnify my symptoms. I moderate a few sites now with Ben’s Friends and find helping others helps me. I struggle with depression and take medication to help me. An internet connection is the same for a disabled person as an able person. If I didn’t tell you I was disabled online, you wouldn’t realize [it]. I’ve learned I must just Keep Trying and Stay Strong!



Was connecting with other Ataxia patients what made you decide to go with the flow instead of fighting Ataxia any longer? Do you feel that knowing that others are somehow managing gave you the motivation to create a new life for yourself?

Being able to connect with other Ataxians was a big thing, there is not one Ataxia support group in the state of New Jersey. Face to Face is always the best, but I am grateful to Ben’s Friends. My anger was bad, I also went to group sessions at a center for vocational rehabilitation for the developmental and physically disabled and learning how to cope from others who have been disabled longer then me calmed my anger. I helped them also, I made friends. It made me want to keep trying.


• Do you have support at home from family or friends? How do the help you? 

I’ve lived in a 1 room w/a bathroom apartment on the Jersey Shore for 12 yrs., it is perfect for me and in my budget. Family and Friends care but have their own lives and their own children. They care but I feel how uncomfortable my disability makes them. I know they would be there if I need them. I’ve alway’s been a loner.


• Does your health insurance plan cover your treatments, medications, supplies? Do you get benefits from Social Security or Medicare?

I’m on Social Security Disability, I so appreciate the safety nets we have. I’m on PAAD, Prescription Assistance for the Aged and Disabled. I begin Medicare in July, had to wait 2 yrs.; I paid for a basic plan for those 2 yrs., it is not easy making ends meet. It panicked me when I first found out the amount I receive , I made a lot of adjustments, physically and financially but everyone has their struggles.


• Did doctors figure out what you had after looking at your test results? Who figured out you had Ataxia? What treatment did he/she recommend? 

The MRI showed Cerebellar Atrophy which causes Ataxia, genetic blood test was negative, but there are genes that haven’t been discovered. No medication for Ataxia; anti-anxiety, anti-depressants are prescribed. Lifestyle and diet changes are important. I follow Gluten Free, Vegetarian diet, no alcohol and low sugar and no white flour or processed foods. It  sounds harder than it is :)  Fatigue is a big problem; I put a lot of energy in things able people don’t have to think of.


• Are you in pain?

I have my pain in my hands at night, I stay away from prescription pain killers even though Dr. offered them. I fell in January 2010 and broke my left knee cap. I had 2 surgeries to repair it. During my recovery in bed I found Ben’s Friends. I was in the darkest place in my life; guess that’s what they call the crossroads. I’m still and always will be a work in progress and I’ll keep trying.


NORD [National Organization for Rare Disorders]

EURORDIS [Rare Diseases Europe]


American Ataxia Networking

Living with Ataxia

Ben’s Friends


I am always on the lookout for great information that caregivers can put to good use.  Please visit the links below to find resources, insights and tips that can help your caregiving run a little more smoothly.

Keep in mind that our brain needs fuel to stay sharp. Some articles teach, others enlighten.  Others merely propose a different perspective on common ideas. Consider them mental calisthenics!

Explore & enjoy!



Small Bird Studios  –  loss of child blogs

Invisible Disabilities  –  videos, education & support for people with chronic illness

Association of Blind Citizens  –  resources for the blind

Schizophrenia Forums

National Stroke Association  –  education, treatments, support

Ability4Life  –  resources for our aging parents

Best-Endings  –  addressing end-of-life topics

NHS local  –  UK health information

Genetics Home Reference  –  guide to genetic conditions

Caregivers of AIS Support Group

Wallpaper Magazine –  design, interiors, architecture, fashion, art

Adventurer Jim Clash – “interviews high-profile guests who push their life to the limits”

Compassion and the Individual  – What is the purpose of life?

Create your own support groups  –  join or start your own


The AGE Caregiver Resource Center in Austin, Texas, conducts free caregiver seminars throughout the year that bring valuable information and resources to family caregivers.  I attended my first one recently, “Care Options,” where speakers experienced in caring for seniors delivered a treasure chest-worth of pertinent material in a comfortable and casual setting.  This is a golden opportunity not only to learn about the services and options available, but also to meet other caregivers in the area with whom to chat or to seek support.

The first presenter was Christi Buerger, LBSW at Nurses Unlimited.  She addressed caregiver respite as a way to keep the caregiver healthy, motivated and ready to continue to tackle the many responsibilities s/he has taken on.  A short period of respite can be coordinated through assisted living communities if space for the caree is available and planned well in advance, in hospice or at home.  DADS (The Texas Department of Aging and Disability Services), Area Agency on Aging and Medicaid may cover the cost of caregiver respite.  Please visit their website for more information.

If hiring someone to provide care at home, Christi offered the following:


Tips for hiring in-home respite care:

  • Feel safe and comfortable with who you hire. Be aware that the emotional need the care taker has is different from that of the individual at home
  • If hiring a professional agency specializing in personal care:
  • Make sure they are licensed by the Texas Dept. of Aging and Disability, and that employees are bonded
  • Get quotes on rates prior to their visit to your home
  • Ask if agency has a registration fee or trip fee
  • Ask if rates increase on nights or weekends
  • Ask how their staff is credentialed, especially the administrator.  Ask for recommendations from local healthcare providers or associations
  • Ask if there is an Emergency Procedure Policy in place
  • If not hiring a professional, remember:
  • Check multiple references
  • Ask about experience and / or certifications
  • Realize that they are not bonded & insured, thus you are exposed to being personally sued.  (Homeowners insurance does not cover an in-home care worker being harmed in the home.)
  • If you have Long Term Care, it will only allow a licensed agency.




The time to take caregiver respite is before the caregiver gets to the end of that caregiving rope.  In between breaks, daily “escapes” help to maintain a better perspective on the important task of caring for a loved one.  The tips above can help find proper care for the care recipient while keeping the caregiver healthy in body, mind and spirit.

(I will talk about the other great speakers in another post!  Stay tuned!)



The AGE Caregiver Resource Center’s Caregiver Seminars (Saturdays):

  • April 28, 2012     10am – 12pm     Austin

“Emotional Survival for Family Caregivers”  by Barry           Jacobs, PsyD – Author talk, book sales, signing


  • July 14, 2012     10am – 12pm     Round Rock

“Practical Tips for Alzheimer’s Caregivers”



Questions or RSVP Contact: Bruce Kravitz, AGE Community Education Director 512-451-4611  x236   or  bkravitz@ageofaustin.org



Take Time Texas – Available Respite Services

DADS – Caregiver Support in Texas

National Association of Area Agencies on Aging

Nurses Unlimited  –  Texas

Area Agency on Aging  –  Austin:   512-380-9339

AGE of Austin – Caregiver Seminars

Greater Austin CARES  –  respite programs for memory-impaired individuals and their caregivers, Austin


Let’s stand strong together in solidarity for

World Rare Disease Day 2012!

February 29, 2012

Rare Disease Day 2012

Rare Disease Day 2012








World Rare Disease Day 2012

“February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries.On this day hundreds of patient organisations from more than 40 countries worldwide are organising awareness-raising activities converging around the slogan “Rare but strong together”.

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! Get involved!

The focus of this year’s event is Solidarity.”



Rare Disease Day USA 2012

“Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 29, 2012. Learn more about the History of Rare Disease Day, Past Successes or the Goals and Plans for this year.”

“In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2012, our focus is solidarity.”


Write your representatives

As part of this awareness campaign, the organizers suggest that we write to our government representatives to tell our story in order to paint a better picture of what families dealing with rare diseases endure.  In this manner, we can point out the specific problems that must be addressed and begin the process to overcome them through awareness, research and legislation.  An excerpt of their letter follows:

“…Most rare diseases still have no treatment.  Of the 7,000 listed on the NIH website, only about 200 have FDA-approved treatments. Individuals and families affected by rare diseases feel alone and forgotten by our nation’s healthcare system, and often have to fight their own battles to obtain needed treatment and services.

“As a member of Congress, we want you to know about the most pressing policy issues facing patients and families living with rare diseases. These include:

  • protecting insurance reforms, such as the elimination of annual and lifetime insurance caps
  • implementation of provisions related to rare diseases in PDUFA V
  • ensuring adequate levels of funding for NIH and FDA to promote medical innovation and protect the safety of the American public
  • eliminating barriers to access to treatment
  • achieving coverage parity of medical foods for rare inborn errors of metabolism, consistent with coverage standards for other life-saving treatments…”

Let’s increase research for successful treatments, cures & eradication of rare diseases during our lifetime!


I recently joined Twitter: what an amazing cascade of articles, news, resources and every morsel of fact & commentary imaginable!  I have managed to make contact with caregivers or professionals who constantly provide interesting and practical information that caregivers can use.  I have also crossed paths with people who live with ailments like CRPS, rheumatoid arthritis, cancer, diabetes, mental illness or aphasia, and who provide a first-hand account of leading an existence with a chronic condition.  I have “met” survivors who have beaten cancer!  All of them are an inspiration, as they deal with an invisible layer of challenging circumstances that circumvents most of us.  We are lucky!

Because my goal with CaregivingCafe.com is to share information and resources in order to help caregivers in their caring, I have listed some links below.  They include suggestions for handling caregiving issues, finding support, locating benefits, a place to find other caregivers, inspiration and so much more.

Please visit their websites and blogs!


CancerHAWK   – cancer caregiver

RobCares   – cancer caregiver

WhereWeGoNow   – cancer survivor

Stan Goldberg, PhD   – cancer survivor, author, caregiving

RainIntoRainbows   – CRPS /RSD fighter

RAWarrior   – rheumatoid arthritis caregiver

InvoluntaryTransformation   – trauma caregiver, fighter

Am I Diabetic?   – diabetes

Nurse Barb   – women’s health

Dementia Today   – dementia & Alzheimer’s

Dreambeanies   – solutions for hair loss

Treatment Diaries   – your diary…shared healing

Aware of your Care   – caregiving tools for chronic illness

Tonya Ferguson   – inspiration

National Aphasia Association   – aphasia


Numerous agencies aim to enhance the lives of elderly, disabled or chronically ill persons across the country and worldwide.  Finding them, however, seems to be a bit of a challenge.  I think that part of the reason is that unless we are looking for specific services and do some digging, we don’t usually see billboards or hear ads during prime time television or radio about, say, support groups for cancer patients or PTSD literature.  They are frequently tucked away in health sections of the newspaper, which may only catch the eye of someone already dealing with such issues.  Seldom do I see information on new pain treatments or transportation for the elderly, for instance, while I’m out and about so that I am aware of their existence and can research them if and when the need arises.

It so happened that I attended a “Get Acquainted with AGE” meeting in Austin last Tuesday.  The group met initially in their Caregiver Resource Center, which housed on the walls all around the room, information about many organizations and agencies providing services for seniors and their family caregivers.  I had no idea of how many there were!  Directors of AGE, which serves seniors in this capital city, mentioned several ways in which the non-profit helps the elderly and often chronically ill or disabled.  One of the services that stood out in my mind was their Durable Medical Equipment Lending Closet.  In actuality, this program is the means by which a mobility impaired individual can retain some independence.  AGE lends wheelchairs, canes, scooters, walkers and anything else that they have available (through donations) to seniors who need them.  For free.  For as long as they need them.  Wow!

As the group toured the AGE facilities, we were told that this Lending Closet served over 1100 persons in 2009 and about 2500 in 2010!  That day, they had over 200 people on a waiting list, mostly needing wheelchairs or walkers with seats.  Having a disabled husband at home, I cannot imagine him being without his crutches.  I know what it means to him to be able to get up on his own.  I had to get the word out:



Please donate gently-used wheelchairs, walkers, crutches, canes, shower chairs, mobility equipment to AGE: Austin Groups for the Elderly!


I posted this on CaregivingCafe.com’s Facebook Page and got a comment from Trish Hughes Kreis, a caregiver to her younger brother Robert, who has uncontrolled epilepsy.  She asked where she could donate a wheelchair in California.  I’m in Texas, so I Googled this and came up with the list below.  Again, I had no idea about all of these organizations and about the wonderful work that they do for disabled persons in country as well as the world!

Thank you, Trish, for asking the right question!

Please visit her website for education about seizures, working caregiver resources and tools to find the right care facility:

Robert’s Sister


If living outside Austin, Texas, please consider donating any equipment that is no longer needed to the organizations below.  They will repair them as necessary and give them to persons young, elderly or disabled both in USA or in many countries around the world.

Mobility-Advisors  –  directory of organizations

HomeCares  – CA

UCP Wheels for Humanity  – worldwide

Wheelchair Foundation  – worldwide

LifeNets  – Indianapolis

Joni and Friends  –  Agoura Hills, CA

Bridge Ministries  – Bellevue, WA

Salvation Army


CareCure Forums


In an effort to reach caregivers so I could let them know about the many services, resources, support and sympathetic souls who offer help and guidance out there, I recently joined Facebook & Twitter — finally!

Wow!  Articles about caregiving abound!  I wish I had the time to read all of them… From research findings, news, checklists and laws to tips, wellness and personal accounts, you can find something useful in the links and comments posted.  I would definitely recommend joining both Facebook & Twitter!  With so much information in circulation, however, I wondered what some of the creators of caregiving websites considered most important for caregivers.  So I asked some of them!

I hope you, caregiver, will put into use the tips presented by the experienced contributors.  They have been or are still caregivers who want to help others going through similar journeys.  Remember you are among millions providing care borne out of love and respect for someone special.  So when the going gets rough, reach out!

Thank you so much to Cindy Laverty, founder of The Care Company, for contributing the first of a series of posts providing practical tips for caregivers to better manage their role.

Cindy gained her expertise through hands-on caregiving of her ill former father-in-law.  Sharing her knowledge to empower caregivers, she is a caregiving expert, speaker, senior-care commentator and author, and hosts “The Cindy Laverty Show” on Fridays at 10 am PST on CRN Digital Talk Radio (CRN1).

Please visit her website to find more insightful articles that assert caregivers “to care for a loved one while maintaining balance in their lives.”



“3 Tips for Caregivers” 

By Cindy Laverty

Author of Caregiving – Eldercare Made Clear & Simple


I learned the hard way that the caregiving journey is about the caregiver and how that person shows up in the world.

It’s so much about how we stand in our own personal power, but it’s easy to get stuck in the notion that it is all about how hard life is now that you have become a caregiver. Caregiving changed my life in so many essential ways and for that I am blessed, grateful and am determined to help others find their own empowerment…

1. You can’t fix what is wrong. When you try live with the Fix It Mentality, you are setting yourself for constant disappointment which leads to a feeling of failure. Stop fixing and learn to become an Empowered Advocate. You might not be able to fix what is wrong but you can advocate on behalf of a loved one who can no longer do that. There is personal power and strength in showing up as an advocate and you should never underestimate the power of that for your loved one.

2. You cannot and should not do caregiving alone! You must set up a support team, a group of people whether they are professionals, family members, friends, volunteers, anyone who is willing to show up and help you out. Caregiving is virtually impossible if you attempt to do it alone. You get nothing but heartache and exhaustion. Your loved one may protest if you bring outsiders in and that’s okay. You should not lose your life, your emotional sustainability or your soul because you said YES to caregiving. Reach out and ask for help and be very clear about exactly what you want someone to do. That may be cooking, driving, sitting with your loved one, paying bills, etc. There are things you can delegate to others, but you must first be willing to ask. You will be amazed at how people will show up and be there for you.

3. Take time out each and every day to care for you! This is not optional. At the very heart of caregiving is YOU. You matter and if you feel like you don’t, then find out what happens if you get sick or suffer caregiver burnout. Self care is simply not optional. There is nothing admirable about a person who sacrifices his/her own life to care for someone else. At a minimum take one hour a day and care for you. Figure out three or four things that will help you get centered and do them. Alternate the days. Perhaps one day it’s exercise; the next day it’s meditation; the third day it’s something else. Whatever it is for you…you absolutely must engage in self care.


Click on Soul of Care to access “10 Powerful Keys to Reclaiming Your Life Without Turning Your Back on Your Loved One”

The Care Company


Twitter: @CindyLaverty

Facebook:  The Care Company

Phone: 855.4CARECO


The links below take you to information & articles recently posted throughout the internet.  From building strong bones to bringing up touchy subjects with our elderly parents to using email to talk to your doctor, you’ll find something useful to put into practice at home or to consider for the future.


11 Foods for Healthy Bones

What is my role in developmental screening of young children?

After Caregiving: Picking up the pieces

Having “the talk”

UHF Next Step in Care for Family Caregivers

Vote: Should Physicians Use Email to Communicate with Patients?

NIH Scientists Find Cause of Rare Immune Disease