Saturday, January 25, 2014

Rock Lives On

I love nature and music.  This is no secret to anyone who knows me. And if you've ever listened to my Youtube Channel you know that I have a profound appreciation for great guitarists.  So when I came across this story, I just had to share it. 

I know that old school musicians are generally referred to as cats but check out these birds performing live at the Peabody Essex Museum.

Life After Caregiving: Waiting to Exhale

This is my first post in months and therefore it's fitting that it's a message to fellow former caregivers as well as those who currently find themselves in that role.

If you have ever been the full-time family caregiver for a person with dementia, Alzheimer's Disease  or another illness that requires almost round the clock attention, you understand the demands that role places on you both emotionally and physically.  In fact, unless you have a large support network, your life takes a backseat to the person for whom you are caring.  Whether your life prior to being a caregiver was that of a social butterfly or a quiet homebody, once you take on the role of a family caregiver, your life is primarily focused on meeting the physical and emotional needs of another person. 

In a 2009 article "Family Caregiver of People With Dementia" for the National Institutes of Health, Dialogues in Clinical Neuroscience*  the authors state: "Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship."

In a July, 2013 article for FactTank it was noted: "Caregiving encompasses everything from buying someone groceries and managing their finances to helping them with bathing, dressing and other tasks of daily life. But a 2012 survey by the AARP Public Policy Institute and the United Hospital Fund found that in recent years, the role of family caregivers 'has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once only provided in hospitals.'

In fact, nearly half (46%) of family caregivers reported performing such medical/nursing tasks, three-quarters of those said their tasks included giving injections, administering intravenous fluids or otherwise managing medications."

People are starting to "get it".  Caregiving is overwhelming.  Some people are tired of hearing that but here is what they also need to hear. 

 Often when family caregivers have a respite from their responsibilities or are in the process of resuming their lives after their loved one has died, what many of them want and need most is a little "me" time, a little downtime from living a life that revolves around another person's likes, dislikes and needs.  Too often the role of the family caregiver is equated to that of the paid health aide or professional caregiver.  That is a mistake.  The emotional and personal investments are very different.  

Family caregivers often put careers,  social lives and even romance on the back burner and instead willingly live a life of catering to the lifestyle of the person for whom they were caring.  What family caregivers crave most when their caregiving duties are done is simply to "exhale".  Yes, there are some former caregivers who jump right back into the old routines.  However, after a long stretch of a life as the moon revolving around the sun, most former caregivers crave a life free of doctors appointments, schedules,  and entertaining their loved one's friends.  To some people that may sound selfish.  To fellow former caregivers, it's called reclaiming your autonymy and identity. 

Brodaty and Donkin cite in their study: "Caregivers face many obstacles as they balance caregiving with other demands, including child rearing, career, and relationships. They are at increased risk for burden, stress, depression, and a variety of other health complications.26 The effects on caregivers are diverse and complex, and there are many other factors that may exacerbate or ameliorate how caregivers react and feel as a result of their role. Numerous studies report that caring for a person with dementia is more stressful than caring for a person with a physical disability.25,27,28 "

In the months or years following the conclusion of your caregiving responsibilities, well meaning friends may not understand why you aren't feeling particularly social and chalk up your responses to grief or depression.  Some may even view your post caregiving behavior as selfish, rude or a personal rejection. Many will say that "you're not acting like your old self".  The truth is after years as a caregiving for a chronically ill person, you're not your old self.  All you can do is explain, you can't make others understand.   You also must establish boundaries.

As Jane Collingwood writes in her article, The Importance of Personal Boundaries, "boundaries are a measure of self-esteem.  She advises, "Remember the importance of saying 'no' to unreasonable requests, and reasonable ones from time to time, if they conflict with your plans. Challenge all insults that are masked as humor. As you learn to extend your boundaries, try to adapt your behavior so you are not stepping over other people’s. This may take an extra effort because our habits can go unnoticed, but aim to stop making digs at people, or using humor as a weapon to put others down.

Bear in mind that those close to you may not be fully supportive in your attempts to change. They have been used to the old ways of doing things. As with any life change, extending boundaries has a price, and this may be losing acquaintances along the way. Of course, those relationships that are worth having will survive, and grow stronger."

There is life after being a family caregiver.  It will be different and it will take time and being a little selfish.

* Henry Brodaty, MD; DSc; FRACP; FRANZCP*
Henry Brodaty, Primary Dementia Collaborative Research Centre and School of Psychiatry, University of New South Wales, Sydney, Australia; Academic Department for Old Aged Psychiatry, Prince of Wales Hospital, Sydney, Australia;
Marika Donkin, BA-Psychology (Rons); Grad'DipProf Ethics

Friday, August 23, 2013

Bradley/Chelsea Could Be My Child, Maybe Yours Too

The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.
Martin Luther King Jr., Strength to Love, 1963

There is a gift in losing everything and everyone that you love ... freedom.  And while being outspoken can still cost me friends and potential jobs, I have already lost the only thing that I still feared losing.  So if I can't muster the courage of my convictions now then every history lesson, civic class and sermon went to waste.  

This week I have probably spent no less than 20 hours a day on various social media sites trying to update my profiles, trying to sell products, writing and editing installments of my book and trying to rebuild my life.     During that time I have read an abundance and a wide range of opinions on the case of  Bradley/Chelsea Manning.  The comments ranged from calling him a "hero" and a "patriot" to calling him a "traitor", "coward" and "wimp who is pretending to be a transsexual in order to escape punishment"  What I didn't read, or maybe I just missed it, is that Bradley/Chelsea looks like a teenager who should be out shooting hoops and wondering about school instead of being a soldier who is carrying the weight of the world on his shoulders.

 I am 53 years old and Bradley/ Chelsea Manning is young enough to be my child.  In fact most of the young men and women that we send off to fight our battles are. They always have been.  But today's young men and women aren't the "grunts" and "foot soldiers" of generations past.  These young men and women are provided with weaponry and technology that would be the envy of the ancient gods.  Satellite imagery, bunker busting missiles, drones, and computer surveillance have redefined the rules of war.   Who teaches these 18-20 somethings the ethics and critical decision making to wield that much power?

Bradley/Chelsea Manning is currently 25 years old.  He stands 5'2" tall, making him about the size and weight of your average 16 year old.  I look at his face and I see a young person who when faced with a moral and ethical decision that would have tested the soul of a much older and seasoned person, acted on his conscience.  Did he violate the military code of conduct? Yes, he did.  Did he breach national security? Yes, he did?  Does he deserve to be punished, yes?

Does he deserve to be vilified, ridiculed, psychologically abused, and confined to prison for the next 35 years?  NO!

While Bradley Manning's actions may pose a national security threat, so did outing  CIA agent Valerie Plame.  For the latter, Scooter Libby was sentenced to 30 months in prison and fined $250,000 a sentence which was commuted in June 2007 by President Bush, voiding the prison term. The convictions still stand on the record.

If Bradley/Chelsea's actions made the US more vulnerable, so did the actions of the Wall Street banks and hedge funds who nearly brought the US economy to its knees.  To date, no one has been sentenced to jail for that.

If Bradley/Chelsea's actions were a breach of the military code of conduct so are the rampant sexual assault and hazing incidents.

"One night in October, an Army private named Danny Chen apparently angered his fellow soldiers by forgetting to turn off the water heater after taking a shower at his outpost in Afghanistan, his family said.

 In the relatives’ account, the soldiers pulled Private Chen out of bed and dragged him across the floor; they forced him to crawl on the ground while they pelted him with rocks and taunted him with ethnic slurs. Finally, the family said, they ordered him to do pull-ups with a mouthful of water — while forbidding him from spitting it out.

It was the culmination of what the family called a campaign of hazing against Private Chen, 19, who was born in Chinatown in Manhattan, the son of Chinese immigrants. Hours later, he was found dead in a guard tower, from what a military statement on Wednesday called “an apparent self-inflicted gunshot wound” to the head."

This past July the New York Times reported:

A military jury on Friday convicted an instructor at Lackland Air Force Base of raping one female trainee and sexually assaulting several others, the first major case in a sex scandal that has rocked the Air Force’s basic training system.

" The sexual abuse scandal is among the worst to hit the military in over a decade. In 1996, dozens of women at the Aberdeen Proving Ground in Maryland accused male supervisors of rape, sexual assault and other offenses in 1996. A few years earlier, more than 80 women were assaulted during several days of drunken revelry at the Tailhook Association convention in Las Vegas, a case that led to the resignation of the Navy secretary and two admirals.

There is clearly a precedent for pardoning Bradley Manning, in spite of the fact that Scooter Libby was a civilian and Bradley/Chelsea Manning was active duty military.  With such a range of sentiment in the nation, I would not want to have to make that decision.  But then again, I would not have to want to make the decision that Bradley Manning made either.  At least President Obama has a few more years of experience to draw upon. Whatever the President decides will be within his legal right.  However, if President Obama does not pardon Bradley Manning, neither those on the far right or the far left of the political aisles can claim the moral high ground. 

In the meanwhile, I will keep Bradley/Chelsea and all of our service men and women in my prayers.  I hope that you will too.

Dr. Martin Luther King said, "Our scientific power has outrun our spiritual power. We have guided missiles and misguided men."  I am certain that he never imagined this.