It’s Okay To Laugh, Cry and Feel Uncertain

6360_1109050649382_1320300607_282944_6468605_s1In 1990, Robert Harris and his wife and best friend, Cindy, had been married 10 years and had two boys, ages 2 and 5.  One day, Cindy complained of pain in her knee.  After going to an orthopedic surgeon expecting the usual sports related diagnosis, their world changed. Physicians discovered that she had Non-Hodgkin’s Lymphoma. Cindy went through chemotherapy and radiation. The family celebrated her “cure.”

For 16 years, Cindy was in remission.  During that time, the family moved from Maryland to Orlando, and watched their children grow up. Then, in 2006, while taking a neighborhood walk together, Cindy’s knee “gave out.”  Again Robert and Cindy went to orthopedic surgeons only to learn that she had a deadly form of cancer called Leiomyosarcoma.

“I very unexpectedly became an at-home caregiver,” Rob says.  Today Cindy has “been cancer-free, but had [her] leg amputated and [is] dealing with painful inflammation and erratic blood counts.  Chemo has affected [her] bone marrow. [and there is a ] Possibility of leukemia. [we’re] going thru testing now. Hoping for the best.  We are grateful for every day we have and look at it positively.”  Unable to use a prosthesis, Cindy is now wheel-chair enabled.

Robert Harris is best known online today as @Rob_Cares, a moniker he adopted after writing a book about caregiving and starting Rob_Cares LLC. “When I was told my wife had cancer, a 28% chance to survive and could die in 4 months, [with Leiomyosarcoma, Stage III]  I felt completely lost and helpless. Just like when 9-11 hit us. We didn’t know what to do.  I hated that feeling. As a result, I didn’t want anyone else to feel helpless, like I did.  I also wanted them to read our story and know that it’s okay to love, laugh, cry and feel uncertain.”

Published in July 2012, Rob’s book, We’re In This Together:  A Caregiver’s Story  is a 5 star hit on Amazon.  It is a #1 bestseller in the Physician and Patient Caregiver Category and continues to rank as the #4 top rated book in that category since it’s launch.  Why’s this book so special?

It is written from the heart.  “Most of us don’t practice medicine, yet, without warning, we are thrown into a medical environment and told to be a caregiver to our loved one. Without any experience, that is a daunting task. I wrote the book to help others become knowledgeable in their roles from the lessons I learned on my journey.”

The book chronicles both of Cindy’s cancer experiences, with 70 tips for caregivers interspersed with Cindy’s observations.  As Rob says, “I knew nothing when I became a caregiver. I was too proud to ask others for help or advice.  I was completely out of my element…in almost every regard. Whatever I learned was self-taught….”

Rob remembers a moment when he “dove into waters I had never encountered” at the drug store, “I had to learn about caring for a female in terms of their hygienic needs, etc. As a male, we are less attuned to beautifying ourselves and certainly not our mates. It was very uncomfortable for me when I had to shop for feminine hygiene products in the store for the first time. That was embarrassing. Thank goodness a woman approached me who could tell I seemed lost and didn’t know how to swim in that isle of the store. She asked for my list and located the products my wife was needing. Other than laughing at me (hysterically, I might add), she was very kind.”

From the mundane to the profound, Rob shares and provides guidance to legions of caregivers.  And there truly are legions-the numbers are astounding.  There are over 65 million American caregivers, a number that is 29% of the total population.  These caregivers devote 20 hours a week caregiving.  Almost a million and a half of those caregivers are children, between the age of 8 and 18.   Forty percent of caregivers have been diagnosed as clinically depressed.

Rob does the job of many caregivers.  “I attend all doctors appointments, quarterly check-ups, housekeeping, etc. Keep her spirits high.  I’m helping her adjust to her new life at home and making every day a great day for her. We have fun and laugh.”

That’s an important part of caring for himself as well.  “We love each day we’re together as a family. We created an acronym: ESD = Every Stinking Day live each day as if it’s our last,“ he says.

This strategy applies to everyone as well. “Everyone that interacted with us was in a positive frame of mind and happy as possible…. I communicated with “happy” family and friends only. If someone was negative or critical, they were removed from my inner circle until they changed their mood. That’s how we were able to remain upbeat during the most difficult of times.  We had a friend that would always say, “You poor dear.” She was ousted from our group as a result.”

Staying upbeat has been his goal.  “I wouldn’t allow myself to get stressed. Whatever was going to happen would happen.    Being stressed was not going to change our set of circumstances….To unwind from the stress of the events we faced, we laughed a lot, joked with others and made sure.   We would only watch happy shows and comedies/movies. I also went for runs for quiet time.”

Rob and Cindy use this strategy in their interactions with medical staff. “We played practical jokes on doctors, committed random acts of kindness and made friends with everyone.”  In fact they have made it their job to know their health care providers.  “The nurses, not the doctors, run the hospital.  They are in charge.  We treated everyone like family as soon as possible. I bought them snacks and drinks. We asked and learned about their families.  When doctors came in, we did the same thing. We made them tell us about them. Nothing professional. Some were resistant at first, but eventually, they warmed up to us. We made friends with them.  Most are our friends today.”

They made a deliberate effort to be connected. “Our goal was to be treated better than everyone else on the floor, especially when my wife needed them. “  Yet their idea of being positive and connected to others comes from having touched by death.  “My wife passed away and came back to life in December 2006. The doctors were right there for us the entire time.  Most people see angels and bright lights…She saw a shopping mall and Coach purses without price tags! Honest!” Rob states.

When asked how friends and family can help caregivers and patients, Rob is full of suggestions, “Communication is MV_3_12_RobHarris__197_WEBthe key. Call and ask what the family needs. If they say they need nothing, bring them food from a restaurant, come visit or just call the caregiver to see how she/he is doing. Outside contact is missed when stuck at home or a hospital. It’s important to stay in touch with friends and family.”

Rob’s first book is a love story but it is also about cancer.  “It puts cancer out in the open and all the emotional dilemmas that come with it. We’re human. My book speaks to that.”

Now, Rob is editing another book called, We’re In This Together: A Caregiver’s Guide which he hopes to have ready in the fall of 2013. This book will continue to describe his learning and also take a “psychosocial perspective.”  Rob says, “As men, we don’t share our emotions. I held them back, as well.  I learned as I went along that it was okay.”  And he promises that like the first book, “you’ll be laughing and crying.”

Rob Harris’s Book is available at Barnes and Noble, at Amazon, We’re In This Together:  A Caregiver’s Story and on Rob’s website.  This post is a summary of a twitter chat #HCHLITSS with Rob conducted on May 30, 2013 and personal communication.

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Pharmacists As Partners

You know those little dosage cups that are on all the children’s over the counter medications…urlOne study from 2010 found that only 30% of those using these cups with printed markings gave accurate dosages.  Large errors (40% off ) were made by ¼ of the parents using the printed cup.  In fact cups were associated with increased odds of making dosing errors compared to oral syringes.  Limited health literacy was associated with making a dosing error. ***   

These studies are just the tip of the iceberg.  They describe part of the huge problem with medication errors that occur daily.

What can we, as consumers and caregivers, do to reduce errors?  We can turn to others, part of the healthcare team who are often forgotten, but who are trained to help and who are available when we purchase medication–pharmacists. 

Goldina Erowele is a clinical pharmacist and caregiver who has recently co-founded an online magazine called CareNovateMag.com.

“To a pharmacist, health literacy is the caregiver’s and patient’s understanding of instructions on their prescription drug bottle,” Dr. Erowele states.  Health literacy is about “caregivers’ and patients’ ability to hear, read, process and understand basic services they need to make health decisions.”

Today, shorter face time with physicians increases the opportunity for misunderstandings.  Dr. Erowele is concerned about the growing problem of medication Goldinacompliance and medication errors.  She feels that improving health literacy of caregivers can help. “Being a caregiver to a senior with high BP means the caregiver needs to have a understanding on what high BP symptoms are.” It’s important for caregivers to buy into the health literacy learning curve in order to serve their loved ones, Dr. Erowele believes, but she knows that “the learning curve can be huge.”

On a daily basis patients will nod their heads at what the doctor is saying, then, when the doctor leaves the room they will turn to their family, the nurse or whoever is there and say “What does that mean?”

“Healthcare providers can make it easier on patients and caregivers by using less jargon and more plain language,” Dr. Erowele states.  She explains, “instead of healthcare providers saying to patient ‘you are getting an analgesic,’ they should  say, you are getting a  ‘pain killer’.”  Dr. Erowele recommends this plain language website for help.

But plain language has to be paired with an understanding of what the patient knows.  “Health literacy also needs to include interpretation, for example what does taking medication three times a day really mean?  It’s different for everyone, depending on work schedule, sleep schedule, support, home environment,” says Dr. Erowele.

You have to start with the patient.  For example, many people are visual learners.  “I use pictures, educational videos or infographics to help [with understanding]. I draw pictures for patients…whatever it takes,” Dr. Erowele states.

“Self-efficacy or  caregivers’ confidence and ability to assist with medications, is an important determinant of medication adherence,”  Dr. Erowele believes.   That’s why she has been a player in starting CareNovateMag.com.  CareNovateMag.com is a new web magazine that is attempting to bring together resources that are spread over the web.  “The reason we started  CareNovateMag.com is so we can provide information, tools and resources that focus on caregivers,” Dr. Erowele says.

Through this initiative Dr. Erowele has been able to bring to light drug interactions that are easily avoided.    She relates, “Blood thinners and leafy greens could be a bad combination.  Grapefruit juice interaction are big news. It’s important to avoid grapefruit with some high blood pressure, high cholesterol medications.”

Caregivers are overwhelmed.  Dr. Erowele hopes that CareNovateMag.com can be part of the solution.

*Dr. Erowele and her colleagues have developed a survey that she would like caregivers and patients to complete.    Go to http://www.carenovatemag.com/1-min-poll-medication-info-and-resources-for-caregivers/

**Dr. Erowele recommends this website with videos on  medication management for caregivers  http://nextstepincare.org/Caregiver_Home/

Medication_Management_Guide/videos_about_medication/

***Yin, H., Mendelsohn, A., Wolf M., Parker R., Fierman A., van Schaick L., Bazan I., Kline M. & Dreyer B. (2010).  Parents’ medication administration errors: role of dosing instruments and health literacy.  Arch Pediatr Adolesc Med. Feb;164(2):181-6. doi: 10.1001/archpediatrics.2009.269.

 Based on #hchlitss twitter chat.  For transcript look here.

Another Caregiver Conundrum…

A 2011 study in the Journal of General Internal Medicine brings to light another problem with caregiving.  The people that are hired to care for elders or disabled may not be health literate.  Health literacy  is  about understanding complex terminology.  7221509-question-mark-with-american-flag-and-dollars-illustrationIt’s about conversational competence like the ability to listen effectively, articulate health concerns and explain symptoms accurately.  It’s also about evaluating, analyzing and deciding about one’s own care. It’s not just reading.

A study conducted by Dr. Lee Lindquist in Chicago looked at the health literacy of 98 paid caregivers.   The group had higher health literacy than the average American  but had difficulty with complex medication regimes.  Sixty percent had difficulty accurately interpreting prescriptions and over a third of this group were not health literate.

Caregiving is an undervalued occupation.  Unpaid family caregivers provide the vast majority of care, in fact at the value of $375 billion.  Paid caregivers are often hourly wage earners.  It this study, their  average hourly wage was only $8.91.  The majority of the caregivers in the study were not Americans but were from other countries, 40% were Americans, 34% were from the Phillipeans and 19% were from Mexico and the rest were from Africa, Eastern Europe and India.

imgresAccording to the US government,

“This year, about nine million men and women over the age of 65 will need long-term care. By 2020, 12 million older Americans will need long-term care. Most will be cared for at home; family and friends are the sole caregivers for 70 percent of the elderly. A study by the U.S. Department of Health and Human Services says that people who reach age 65 will likely have a 40 percent chance of entering a nursing home. About 10 percent of the people who enter a nursing home will stay there five years or more.”

$375 Billion Worth of Value: Family Caregivers

“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”

Rosalyn Carter

First Lady Rosalyn Carter is both philosophical and truthful when she describes caregivers.  There are 66 million adults in the US who are unpaid caregivers–nearly 30% of the adult population!

The Canadian Institute for Health Information estimates that there are 2 million unpaid caregivers in Canada. 

Caregivers are defined as either formal or informal. Unpaid caregivers are the informal type, helping others who, due to

photodisability, chronic disease or cognitive impairment, can’t perform essential activities on their own.  Informal caregiving is  performed by family members, neighbors and/or friends, often at home.   Natrice Rese is one of those millions of caregivers.

She worked in long-term care and home care until 2009 when she started family caregiving for her granddaughter, Maia.  Maia has a rare genetic disorder called Emanuel Syndrome, is developmentally delayed, totally dependent and non-verbal.  A website created by her daughter, Stephanie St. Pierre, provides support and information to others facing this disorder.  As Ms. Rese states, “Family caregivers aren’t just there 8 or 12 hours a day.  They live the job, breathe it, think it, sleep little…they need lots of support…  Caregivers contend with personal feelings, grief, exhaustion, fear, and cannot escape from it.”

PHA cknClaudia Nichols is the founder of Pilot Health Advocates, Inc, a private patient advocacy firm helping consumers navigate healthcare.  As a soon-to-be Certified Senior Advisor, she is keenly interested in how caregivers can be supported.  This support is critical now when  “the task of the family caregiver is swiftly morphing into performing sophisticated skilled nursing tasks, including dialysis management, administering IV’s, wound care (an especially difficult task for amateurs and professionals alike) and other professional skills,” she says.

In the US, the monetary value of services caregivers provide for free, caring for older adults, is about $375 billion per year. This figure is twice the amount spent on homecare and nursing ($158 billion)..  In 2007 the economic value of family caregiving was estimated at $375 billion, a figure that exceeded the total 2007 Medicaid expenditures of $311 billion and approaching total expenditures in Medicare of $432 billion.  That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).

The foundation of care in US and Canada is unpaid caregivers.  Yet these caregivers are at serious risk themselves.

Ms. Nichols notes,”Caregiving is stressful and demanding for both caregiver and recipient.  It is often consumes all free time

Informal/family caregivers are at risk for depression, other stress-related illnesses due to stress, fatigue and social isolation. Economic toll fails to account for emotional & financial impact of caregiving on caregivers themselves.”  Ms. Rese agrees, “Not only do family caregivers provide unpaid care, but they also are out of pocket for incidentals, supplies, medicines, on and on.” Ms. Nichols asserts, “The worst case scenario is that caregivers go bankrupt,have breakdowns, become estranged from other family members, become ill themselves.”

Family caregivers are often thrown into the unknown, Ms. Rese feels.  In Canada, 2007 statistics from the Health Council of Canada indicated that  40-50% of seniors with high needs have distressed caregivers.  These same statistics say 2.7 million family caregivers are over the age of 45, 60% of these are women and 57% are employed in addition to caregiving.  Of those, one third of the cared-for have high needs in mobility, physical and developmental delays and chronic conditions.  Twenty percent of those receiving care at home have dementia, requiring 75 percent more care.

Many caregivers are single parents themselves, usually women with children, and sandwiched between elderly family members.  Seven out of 10 caregivers are caring for someone over 50.

The complexity of caregiving has changed.  According to Ms. Nichols, “nearly half family caregivers performed medical/nursing tasks with for those with multiple imgreschronic physical anad cognitive conditions and 78% family caregivers provide medical/nursing tasks like managing medications including IV fluids and injection.  Caregivers found wound care very challenging, more than a third (38%) wanted more training.” The rationale for their  increased care was a desire to keep their family member out of nursing homes or long term care facilities.

The urgency of the situation for informal caregivers cannot be overstressed, Ms. Rese believes.  “There is a crisis already, no beds to place seniors in, family caregivers running out of steam, lack of funding.”

“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers,” Rosalyn Carter stated.  Giving caregivers a voice and influencing a political climate that is focused on “cost-saving” is imperative.

The National Family Caregivers Association now renamed Caregiver Action Network is a place to start.  This organization was founded in 1993 by Suzanne Mintz and Cindy Fowler.  This group has truly brought about awareness of the caregiving experience, becoming the go-to organization for anyone interested in learning about family caregivers.  It was instrumental in establishing the National Family Caregivers Month in November and in 2000 the federal National Family Caregiver Support program was established.  Caregiver Action Network’s mission is to “promote resourcefulness and respect” for family caregivers.

As Suzanne Mintz recalled: “We wondered why no one seemed to be focused on the fact that helping a loved one with a deteriorating illness had a very real impact on not only the person with the illness, but also on those of us who were primarily responsible for helping them. We were family caregivers, and we wanted someone to reach out to us, to tell us where to find helpful information and advice, emotional support, and real hands-on assistance when we needed it. NFCA was created to educate, support, empower, and speak up for America’s family caregivers so that all caregiving families can have a better quality of life.”

Parents Take Notice: Seclusion Rooms

This is beyond disturbing. Does anyone from the school(s) explain the length of time rationale? I mean, don’t get me wrong…the padded room is ridiculous enough, but more alarming is the length of time a child is placed in this type of room as a  ‘time out’ for their behavior.

Most childhood experts agree that the 2-5 minute rule is sufficient enough time to calm down any unruly behavior. After that, a ‘time out’ isn’t even effective.

It was a horrifying experience and what started my investigating into it was the length of time. We now have in place time limits as to what they can do and for how long and when a call is to be made to us. I would rather come get my son than have him be subjected to such treatment.

This absolutely sickens and frightens me! My child’s summer program was in a school building in [name removed to protect child] that had one of these padded rooms. We only found out about it after a note came home the first week stating s/he had been placed in time out for over an hour because s/he wouldn’t comply. I was livid and shocked that my 6 year old, whom I had never been told prior of such issues, was in any time out for that length of time. When I went to the classroom to see where this time out took place (it was in a makeshift seclusion area with three walls and a mat higher than his/her head, for the fourth) was when I saw this padded room. I was told that s/he wasn’t placed in there because another child was already using it. They told me that s/he was in for so long because s/he kept crying and trying to kick the mat down. Well, hello, s/he’s 6 years old and mostly non-verbal! Wouldn’t it make sense that s/he would be scared and react that way? Needless to say, we kept major tabs on them for the rest of the summer. It’s very sad that this is how some are treating our children, special needs or not. I’m not sure what we can do but keep tight eyes on them and make it known that we will not tolerate this treatment. It’s just another scary part of letting our children, especially those without their own voices ,out without us. I hope something is put into place to stop allowing this.

These stories are not uncommon and they are covered in the press because they are so compelling. Never covered are the stories about the trauma kids suffer everyday from being forced to endure years of failure, humiliation, and rejection because their schools refuse to provide them with the services they need in order to learn. 

The above comments in Italics are only some of the comments made by real parents in Massachusetts and over the United States over a truly disturbing development in “care” of our children.   It is “seclusion rooms.”  Please read this description on the opinion page of the New York Times.   This is occurring all over the US.  Here is another story about seclusion rooms.  Then sign this petition.  We parents need to act.

The photo above is from CAIC .

Light A Lamp

http://katscafe.org/wp-content/uploads/2012/03/Bobby-1-Kind.jpg

When I was younger, I would look at a mother playing with her baby and a warm feeling would come over me. I would just dwell in the experience of joy.

Now I wonder about their life, their future, their heartaches to come.  That change occurred in me when a friend’s son was born.  As the child grew and changed.   As autism and seizures took him away.

When I learned that there is such a thing as Autism Awareness Month, I thought of the Christmas, long ago, when the change in my friend’s son was obvious to her extended family but so unwelcome that my friend and her husband believed their 3 year old was just “being stubborn.”  I remember how heartbroken they both were as they had to accept a diagnosis that they couldn’t understand.   How they lost their little boy without a funeral.

I thought about how unaware everyone was when this happened.

Now I think of how so few people know the dreadful truth of life for parents of children with severe disabilities.   How so few people know the heartache of being shunned by neighbors, friends, fellow church members, family.  How these parents are expected by our society to be super-human.  How they are expected to hold down full time jobs while caring for a child with intensive needs (for example, not being potty trained, unable to feed themselves—you get the point).  How they are forced to advocate for their child with healthcare providers, educators, legislators.  How they are supposed to have the money and wherewithal to pay for whatever special services they need.  How so few people understand that these parents are all alone.

I held a tweetchat on Thursday April 12 and advertised it on LinkedIn.  I received this response from the father of a child with autism

Dear Dr. Kathleen Hoffman!

You deserve my appreciation. In this world, most people enjoy their lives and think if someone has a problem or handicap it is by bad luck and let that person or family deal with it. And if they cannot, or are breaking down while doing their best, who cares!

Among this crowd running behind their own wish lists, a chosen few whom God had given tender hearts speak and work for alleviating the miseries and sufferings of the less fortunate. Euphemistically calling them “special” does not absolve us from doing something for them. When we invite a special guest to a party, we try our best to be as hospitable as we can and run around doing everything in our reach to please that person. But when we dub someone a “special” person, we are often equating that with one who should be especially forgotten about except paying an occasional lip service and then looking the other way. Some even straightaway say okay you have a problem but everyone has his or her own. So what is the big deal?

The dilemma is that this is not a predictable and fair world. When parents beget a child, they never know the innocent soul they are bringing into this harsh world will be able to cope with its trial and tribulations and become a successful person like Bill Gates or will become an incapacitated living being with paralysis, autism, cerebral palsy, epilepsy, congenital anomalies, blood disorders or muscular dystrophies. And when it does happen, they are left in wilderness high and dry even if they have been a helping hand for decades for their friends and family who all start shying away from meeting them just in case they start asking for help or favor.

Let alone individuals with a finite capacity to help, countries that champion to be welfare states turn you away saying that if you have a handicapped family member who will cause an excessive demand on their health and social services….

The world is mostly made up of those running for their own lives and smothering others beneath their feet, lest they get slowed down by anyone who is creeping along, rather than stopping and offering support. The very few who do that should be adored and revered.

I have greatest regards for Mother Teresa who dedicated her life for the sick and destitute and did not flinch back even from leprosy patients, and Ms. Florence Nightingale who ran around to look after the smitten and sick in the middle of a war ground.

Such “Ladies with the Lamp” deserve our salutes with hats off!
And you do too.

I am humbled by this father’s comment.

We all need to be “Ladies with the Lamp” and shed light on what is happening to parents around the world.  Please do your part to spread the word and advocate for these devoted, loving people.  They need our help.