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"carer"

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Parenting A Deaf Child


Finding Out

My husband and I found out that our youngest son was deaf when he was around 3 months old. This news came after he spent a month in theNICU fighting for his life. He had passed the newborn hearing test that was given prior to him leaving the hospital, so when we were told the news, the shock was almost overwhelming.
The first thing that lead us to be concerned was the fact that our son would not turn his head to loud noises. He wouldn't get startled by the barking dog or a large truck that would go by the house. Babies have a natural reflex when they are startled. He never got startled. People could in and out of the door, there could be a lot of commotion, but the noises never seemed to bother him. Even his older brother running and hollering around the house didn't phase him.
At his 3 month check-up we brought our concerns to the doctor. At the time, we didn't actually believe that he was deaf but we felt that something was not quite right. The doctor set up a hearing test with the audiology department at the hospital. We went to the test and after, the doctor met with us to give us the news: Our son had profound bilateral sensorineural hearing loss. That meant that he had profound hearing loss in both ears. The damage was permanent and hearing aids may or may not help...
Read the full article at Christinascibona 
(http://christinascibona.hubpages.com/hub/Parenting-A-Deaf-Child)

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Caregiver PTSD: Fact or Fiction?

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Post-traumatic stress disorder (PTSD):  An anxiety disorder that can occur after an individual has undergone extreme emotional trauma. It is most commonly associated with soldiers returning from war or victims of violent crime, but some experts now believe it can also befall caregivers. In fact, when I saw my doctor shortly after my mother died, it was something she mentioned.

Emotional Upheaval

In a way it sounds crazy; how could the impact of caregiving compare to war or violent crime? Obviously, they are very different, and I don’t think anyone is trying to imply they can be compared. But if you unravel what occurs in a caregiver’s life over many years, it’s reasonable to believe some form of PTSD is certainly within the realm of possibility – perhaps to varying degrees depending upon many factors.
Barry Jacobs is a clinical psychologist and author of The Emotional Survival Guide for Caregivers. Dr. Jacobs notes that many caregivers wrestle with uncontrollable disruptive, distressing thoughts months – and sometimes years – after a loved one has died...
http://alzjourney.com/2013/09/12/caregiver-ptsd/

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5 Things a Caregiver Should Know

by 

There is a lot of information out there about how to be a cancer patient. Drink this. Inject that. Have this surgery. Stay away from these.
There's no guidebook giving instructions on how to be a caregiver. There are no physician consultations to tell you what the next step is in how to provide moral, physical, and emotional support to the person you love that has just been diagnosed with a possibly fatal disease. There are no rules about caring for yourself.
Having been a caregiver for nearly three years to my late husband, who was diagnosed at the age of 22 with stage III testicular cancer, I've been around the block. Here are five things I learned that I hope will help guide other caregivers in your heart-wrenching predicaments everywhere:
1. It's okay to freak out for yourself.
You're already freaking out for your loved one. That one comes naturally. What takes a little bit more consciousness and effort, is to allow yourself to lose it all, come totally unglued, fall apart... all over how this diagnosis is affecting you and your life. You're a person, too. Yes, with needs. Your world just got rocked and while you're busy holding it all together in support of your loved one, you forget how to let go and let your feelings matter, too. I'm here to tell you that it's not just okay to allow yourself to feel and experience the magnitude of what you're dealing with, it's something that I encourage you to do, for your own sake...
http://www.huffingtonpost.com/karen-sewell/caregiver-tips_b_3991691.html?utm_hp_ref=tw

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A Caregiver's Guide to Understanding the Stages of COPD

By: Melody Wilding

Chronic lower respiratory disease (COPD) refers to a group of lung diseases, including emphysema, chronic bronchitis, and in some cases asthma, that cause breathing difficulties and airflow problems.
Today over fifteen million Americans have been diagnosed with COPD and in 2011 the disease was the third leading cause of death in the U.S.
COPD guideUnfortunately the problem is extensive and underestimated – it is thought that another 12 million adults are affected by COPD but may not be aware they have it. 
Since the true prevalence of COPD is grossly underestimated, it’s important to understand the symptoms that accompany the disease in order to be able to intervene early.
What are the stages of COPD?
The stages of COPD are characterized by a measure of lung function, measured by a breathing test called spirometry.  The test shows how much air your lungs can hold and fast you can release air from your lungs. Results are reported as a percentage, with 100% being normal and decreasing amounts representing greater dysfunction...
http://healthworkscollective.com/ecaring/128271/understanding-copd-caregiver-guide

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When should we question if our child is getting the right treatment?


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Becoming a carer shouldn't mean the end of your career


Andrew Marr
Jackie Ashley wrote about the tough realities she had to deal with in caring for her husband Andrew Marr. Photograph: Nick Cunard / Rex Features



Jackie Ashley's honest reflections on the tough realities she had to deal with in caring for her husband Andrew Marr, and the reaction of so many to her very powerful personal account have cast a welcome spotlight on a rising and critical social issue.
Whether through serious illness, disability or growing older, rising numbers of people need help with daily living. Most often it is family and friends who give the everyday care and support they need and, as Jackie so rightly observes, we need society to grasp the impact not simply on individual lives, but on business, workforce, personal, health and social services and all aspects of our lives.
In the UK today there are 6.5 million carers. They may be caring for an older parent, a seriously ill partner, a disabled child. Many care full-time and around-the-clock. Rising numbers are trying and often struggling to juggle work, family and care. Very often caring is hidden, taboo even, with full-time carers isolated by responsibilities, working carers feeling unable to seek support from employers as they might over childcare.
Read more at the Guardian 

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Protect a Relative with a Disability

Protect a Relative with a Disability

relative with a disability

By: Maggie Denton

July 13, 2013 

At some point, many families will confront a medical or personal care expense.  This expense is beyond what they could ever have imagined.  It might be a child or grandchild born with special needs.  It could be a husband or wife diagnosed with a debilitating disease.
Facing these challenges, ordinary estate planning flies out the window.  You see a specialist who understands not only the financial needs but also the complicated emotional state of all the family members.  A spouse’s illness might eat up the family savings.  A child born with special needs could absorb all the parents’ time and money.  This is at the expense of healthy children.  Parents could disagree about who should become the future caregiver or trustee of the child with special needs.
He challenges of raising children with special needs often break up a marriage.  Unfortunately, it is usually the husband who checks out.  Mom then becomes the primary caregiver.  All too often, caregivers haven’t made a financial plan.
Read more at the Well Spring Collective 

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Career Advice: Give





In 1990, Jon Huntsman, Sr. made a business decision that most in corporate America would probably have called insane. He was intensely negotiating the biggest business deal of his life with Charles Miller Smith, the head of a British chemical company. Deep into the negotiations over the acquisition, Smith's wife died. She had been suffering from terminal cancer. It was unfortunate, but business is business and the negotiation was incomplete. On top of that, Huntsman had millions of dollars on the line -- money that would be his if he just pushed Smith further.

But he didn't.

"I decided the fine points of the last 20 percent of the deal would stand as they were proposed," he later wrote. "I probably could have clawed another $200 million out of the deal, but it would have come at the expense of Charles' emotional state. The agreement as it stood was good enough."

In his 2008 book Winners Never Cheat, Huntsman summarized his philosophy on business and life, writing, "Monetarily, the most satisfying moments in my life have not been the excitement of closing a great deal or the reaping of profits from it. They have been when I was able to help others in need ... There's no denying that I am a deal junkie, but I also have developed an addiction for giving. The more one gives, the better one feels; and the better one feels about it, the easier it becomes to give."

Huntsman is what organizational psychologist Adam Grant calls, in his provocative new book, a "giver." In Give and Take, Grant, the youngest tenured professor at the University of Pennsylvania's Wharton School of Business, wields a large body of social science research, much of it his own, to challenge the idea that career success is a zero-sum game in which your gains equal my losses, a harmful idea that discourages people from helping each other out at work.

In Grant's book, the reader encounters three types of people: givers, takers, and matchers. Matchers reciprocate favors and good deeds tit-for-tat. Takers try to tilt the balance of a transaction in their own favor, hoping to get more than they give -- the type of person who takes credit for someone else's work. Givers are the opposite. Their hallmark is generosity. Crudely put, givers are focused on others, takers are focused on themselves, and matchers care above all about fairness.

Most people are givers in their personal relationships. They act selflessly and try to contribute more than they take with those they love. But when these people enter the workforce, their style of interacting with others changes dramatically. As Grant told me in an interview, "There is an extraordinary number of people who are in a giver mindset at home and a matcher or taker mindset in the work setting." Only 8 percent of people describe themselves as givers at work. That's because most people think it's safer to operate like a taker or matcher at work; givers, they think, are chumps who will fall behind in the game of life.


Grant explodes that myth in his book, showing that givers are among the most successful people in business. They may also be the happiest. "There is powerful evidence," Grant tells me "that givers experience more meaning in their work than takers or matchers."

This is important considering that Americans spend most of their waking hours -- most of their lives -- at work. The average American man works 8.4 hours per day and the average American woman works 7.7 hours a day. How they feel in those hours is a major determinant of their well-being. But, according to the American Psychological Association, nearly 70 percent of Americans cite work as a major source of stress in their lives and four out of ten say that they experience stress at work on a daily basis. One report indicates that over half of working Americans are unsatisfied and unhappy with their jobs. The top person people don't like being around is, according to the National Time Use survey, their boss. Bosses and work seem to be significant sources of unhappiness for many people.


via The Atlantic


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'I was in tears': Carers tell their stories


11 May 2013


An estimated seven million people in the UK currently provide unpaid care to a sick or disabled child or an adult who could not otherwise live independently.
Many of them are already known to GPs, but the Royal College of General Practitioners says that carers should be routinely screened by their doctors for signs of depression.
A number of carers have told the BBC News website about their experiences.

Philip Wright, Cumbria

Philip with his wife Michelle and son Aaron
"I have four sons. My 17-year-old, Aaron, is severely disabled with quadriplegic cerebral palsy. My wife Michelle, who shared responsibility with me, nearly died in 2011 with a brain aneurysm and a heart valve replacement. It has affected her left side and she is unable to look after our son Aaron any more. So my 19-year-old helps to look after her.
"Aaron needs 24-hour care. I am up most nights and I get no sleep whatsoever. My 19-year-old son looks after Aaron on Wednesday nights so I can get at least one night's sleep a week.
"School holidays can be hell. Aaron doesn't like too much sun so we tend to stay indoors a lot. I'd like to take my boys out for the day but it's just not possible and I can't expect my eldest son to look after everyone else.
"Please don't get me wrong, I get a lot of happiness from my family so don't think it's all bad, but there are some very, very hard times.
"I love my family to bits and would do all I can but when you get no time to yourself and never get chance to socialise anymore it has become very stressful and lonely.
"I think these tests would make me feel that my welfare is being looked after which I would like. But what would really help is someone coming to the house to help me and to give me a break."

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