Category Archives: Blog

Vote Yes For Online Communties


Purple Jacket Readers Note: This is a formal academic essay submitted on ‘The Purple Jacket’ by…

Chris MacLellan, September 8, 2012, Short Essay #1: Vote Yes for Online Communities, COML 509 Professor Alexander Kuskis, Gonzaga University

Photo Credit: Pinterest

Communication takes place in a myriad of ways and modern technology has certainly changed the way society interacts. What would communication be to a deaf person without the ability to read lips or understand sign language? Smoke singles for the Indians; Morris Code? There is an endless list of communication models, yet the common denominator in all models of communication is some form of human interaction. Modern technology has made the world smaller, creating numerous opportunities for people to come together share resources, while forming international support for any one particular cause. This essay will demonstrate the importance of online communities and their positive effects on sub-groups within society.

Anyone who has been a caregiver knows that outside support is an important part of the Caregiving process. Support can come in many different forms: emotional, physical, and financial just to name a few. To be a healthy caregiver, outside support is essential to the physical and mental well-being of all parties involved in the Caregiving experience. According to the National Family Caregiving Association, “More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.” (National Family Caregiving Alliance, 2009) Many of those 65 million people hold down full-time jobs; Working caregivers often sacrifice leisure time, while suffering stress-related illnesses. Caregivers multi-task, are pressed for time, and always searching for that proper balance in life. One way that family caregivers find care, comfort, and support is through online communities.

Photo Credit: Caregiving.com

On-line communities are essential for caregivers. Caregivers use online communities to navigate the home health system, not only for their loved one’s physical and emotional needs, but for their personal support system as well. Denise Brown who leads one of the most popular online Caregiving communities, Caregiving.com said, “Online communities are open 24/7–you can connect when it’s convenient for you. You also can control the type of support you receive–chats, online support groups, blogging, simply reading and lurking. Online communities offer so many options for how and when you connect. They are a great reminder that you aren’t alone, that others understand and know what it’s like.” (Brown, 2012)

Online communities can be as diverse as your neighborhoods. The same can be said for the online community at Caregiving.com. This form of Computer Mediated Communication (CMC) offers a variety of subgroups within the Caregiving genre as Caregiving comes in many different forms. (I.e. Caring for parents, caring for a spouse, caring for a partner, caring for children, caring for sibling) “According to social network scholars, CMC is more than capable of supporting strong, multiple ties between people.” (Thurlow, Lengel & Tomic, 2004) This is where Caregiving.com is at its best. Caregivers are so focused on taking care of others; caregivers often lose sight of self. The Caregiving.com community provides an immediate outlet for all caregivers to help escape loneliness,share resources while collaborating on issues that caregivers face on a daily basis. “For the family members of older people, online social networks can provide a bit of relief.” (Clifford, 2009) Simply put, on-line communities provide the assurance of knowing that you are not alone.

Photo Credit: Pinterest

The very nature of Caregiving implies that someone is the recipient of care. However, how do you describe the person you care for? In 2009, this topic came up for discussion on Caregiving.com as the common description used for those receiving care was ‘care recipient’. One of the members pointed out that the label ‘care recipient’ did not accurately reflect her Caregiving role with her mother. Like any other community who constructively deals with an issue it faces, the community at Caregiving.com collaborated on what the proper term to use for those for whom are cared. “Successful communities evolve to keep pace with the changing needs of members and owners.” (Kim, 2000) Through discussion and subsequent polling of the online community, the term (and new word) ‘caree’ was developed and instituted on Caregiving.com. This type of collaboration creates healthy communities because a voice was heard, action was taken and results were achieved. Everyone felt a part of the process and now the word ‘Caree’ is often heard throughout the network of caregivers.

Photo Credit: thirdage.com

Human nature expresses the need for some form of personal contact with another. While Face-to-Face (F2F) contact is preferable, that is not practical for caregivers who often cannot leave their caree. For the caregiver, “We have also seen how large number of people have in fact begun to establish complex arrangements of long-standing, meaningful social relationships online.” (Thurlow et al., 2004 p.99) On-line communities provides a 24/7 outlet that F2F support groups cannot provide. Having the ability to connect with someone walking in the same footsteps, provides immeasurable care and comfort to a stressed out caregiver. During the 16 years of existence of Caregiving.com, strong personal relationships have been built through this online community.

Photo Credit:thirdage.com

Denise Brown started her online Caregiving journey with Caregiving.com in 1996. Like many healthy online communities, Caregiving.com recognized a need, then put a plan in place to meet the needs of the community of caregivers. Online communities are more than just a niche market; they are communities of real people facing real problems. Through the diversity of online communities, there is unity and a common bond because everyone shares the same footprint. However, the best part about healthy online communities as exemplified by Caregiving.com is that everyone is your friendly neighbor.

References

National Family Caregiving Alliance. (2009). Caregiving statistics. Retrieved from http://www.thefamilycaregiver.org/who_are_family_caregivers/Care_giving_statsitics. cfm

Brown, D. (2012, September 7). Interview by C. MacLellan [Personal Interview].

Thurlow, C., Lengel, L., & Tomic, A. (2004). Computer mediated communication: Social interaction and the internet. (p. 100). London: SAGE.

Clifford, S. (2009, June 2). Online, ‘a reason to keep on going’. The New York Times. Retrieved from http://www.nytimes.com/2009/06/02/health/02face.html?_r=1&pagewanted=print

Kim, A. J. (2000). Community building on the web. (p. 21). Berkeley: Peachpit Press.

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Amazement!


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As we continue to move forward with his aftercare, there is amazement on every side of the aisle. Our last report from the primary care doctor was terrific. She, like everyone else involved in his care, is utterly amazed at the progress that ‘The Little One’ has made since this ordeal started almost a year ago. I have been reluctant to blog lately, because quite frankly, I am amazed (and quite busy) too.

When ‘The Little One’ was diagnosed with cancer in late July of 2011, we started six weeks’ worth of treatments almost immediately. The outcome looked bleak back then, and in fact the doctors gave us little hope for the future when the diagnosis came in. ‘Three maybe four months” said the oncologist back in September of 2011.

It was at that time I made the conscious decision to withhold that information from ‘The Little One’ while telling the doctor ‘let’s wait and see how he responds to treatments.’ I never shared that conversation with ‘The Little One’ until after our last appointment with his primary care doctor just a few weeks ago. (If we are doing the math, that last appointment was in June; I was told in August of 2011 that he had 3 to 4 months. We are almost to a year since the first treatments….) Of course, I consulted with the oncologist on the decision not to share this information with ‘The Little One’ , and he agreed. “Let see how the treatments go and let him live his life to the fullest!” He has exceeded all expectations, and now his doctors want to do a case study on him.

Photo Credit: Pinterest

To withhold this information is a difficult judgment call that caregivers, spouses, doctors have to make on a daily basis. I made this decision based on one simple fact. ‘The Little One’ knew that he had cancer, and he knew that it was serious; I also knew that he was going to do anything he possibly could to beat the diagnosis. Why train the mind to think something is going to happen, when we really do not know when is going to happen?

This week, ‘The Little One’ will visit his oncologist for a quarterly check-up. I am confident that the oncologist will be pleased and say again….”Bern, you look great,” which ‘The Little One will reply, “ Yes, I’ve got a new embalmer!” Laughter is the best medicine, even in its most trying times.

What is left of the tumor is dormant and for all intent and purposes, his cancer is in remission. From the first day, we have taken this day by day. What else is there to do? Every case is different. My decision to withhold this information from “The Little One” was not an easy decision to make. After revealing this decision to him, he was glad not to know… even though he did know.

Photo Credit: Pinterest

In a sad, but beautiful twist of fate, ‘The Little One’s lifelong friend Jill has recently been diagnosed with cancer. Like our first report, Jill’s first report has us all concerned. What is beautiful about this is how ‘The Little One’  is able to transfer his experience of this insidious disease to Jill… to encourage her, to console her, to simply be there for her.  This gift of encouragement is one of the best gifts that one can give to a friend.

We send out a big hug and hello to our friend Doug in STL who is going through treatments at this time.  We are thinking of you Doug!

 Remember…We might have cancer…But cancer does not have us.

Photo Credit: The Purple Jacket

As you have noticed, we have taken a break from Blogging on ‘The Purple Jacket’ for the past few weeks.  As I transition into a new job and into a new academic program at Gonzaga University, “The Purple Jacket” will be taking on a new look too.   We will continue to provide you updates on ‘The Little One’ as this blog is really dedicated to him.  Yet in future weeks, we will expand the content of the blog to discuss the effects of Caregiving on the caregiver.   What is often overlooked in Caregiving is the importance of the health of the caregiver.  Personally, I have had to take a long hard look at this issue, and have come to the conclusion  that the best way to deal with this issue is to blog about it.  In essence, there is a real purple jacket.  I just can’t fit into it any longer.   We have to explore the issue of what it means to be a healthy caregiver!

Photo Credit: Caregiving.com

I am BIG fan of Caregiving.com  The community on Caregiving.com is just tremendous and Denise Brown who is the proprietor of this wonderful website, is an expert in the field of Caregiving. You want to be sure to check out Caregiving.com and become a part of the Caregiving family too!  Follow Denise on Twitter @caregiving and on Blog Talk Radio, too!

WE will also be exploring a new communication theory entitled ‘The Theory of Empathic Communication” in an upcoming blog posts, as well as our Phone A Friend program at SunServe Social Services.  We will also be chatting about a great program at the Pride Center in Fort Lauderdale, Coffee & Conversation which takes place every Tuesday morning at 11:00 am in Wilton Manors, Florida.   I will also have some speaking engagements to announce in August and September.  Coming soon,  ‘The Bow-Tie-Guy’ on Blog Talk Radio!  

Photo Credit: The Bow-Tie-Guy

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November – National Care Givers Month


November is National Care Givers Month!

 We all know some one who is a caregiver, whether we find ourselves taking care of a loved one, know someone who takes care of a loved one, or even if we have heard an inspritational story on the news.

 In today’s busy world it can be easy to forget to show our appreciation to those who make a difference in our lives and the lives of others everyday. As we prepare to celebrate another Thanksgiving, let us give thanks to those who choose to spend their days serving others.

“Appreciation is the highest form of prayer, for it acknowledges the presence of good wherever you shine the light of your thankful thoughts.”
Alan Cohen

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Downsizing


While we know that the tumor has been downsized by the radiation and chemotherapy treatments, we have taken a long look at our personal belongings and have started the process of downsizing in this area too.  So far, the experience has been quite cathartic.

How much ‘stuff’ does one really need to be comfortable in life?  China that has never been used, kitchen gadgets (well, except for the Tumor Extractor!), glasses, roasting pans; yikes where did all this stuff come from?   And better yet… what really is the need?

Funny as it seems, when I was in the seminary those little rooms we lived in seemed so small…now as I look back at that experience, living austerely has its benefits.  Thomas Merton does know what he is talking about!

Cancer is a life changing experience for all who are involved in it.  We have grown closer because of the disease and have I have come to a reality check with my life.   You see, what is important is not how many items you collect, rather what is important is how many lives you touch.   The last few years I have lost touch with my own reality; cancer does have its peculiar benefits.

As the green leaves transition to beautiful autumn colors, we are in a transition mode as well.  What we do for ourselves dies with us.  What we do for others will ever be immortal.  I am honored and proud to be a caregiver, it is one of the most remarkable experiences in life.  I am also grateful for the reality check that our downsizing has provided to us.  May the ‘Little One’s’  health continue to improve; let the downsizing begin!

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The Tumor Extractor just $19.99


We have all seen those gadget that they sell on TV… It seems that all those gadgets sell for just $19.99 and better yet, all these gadgets are a must need for every household!

As I was preparing waffles for breakfast this morning I came across a new product called ‘The Tumor Extractor’

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Simply apply to the area of the tumor and all your troubles will be gone!

‘The Little One’ and I enjoyed a great laugh when I presented him with our new ‘Tumor Extractor’ for just $19.99 and just think…we only spent $10,000 on chemo and radiation! (Of course Monty Python’s Spamalot is playing in the background.) Every cancer patient and caregiver wishes there was something as quick and simple as ‘The Tumor Extractor’ to remove cancer from the body. But what is available to every cancer patient and caregiver is hope, love, support and humor. That is the true Cancer Extractor!

While Each one of us deals with the realty of cancer in a different way, we want to look on the bright side of life!
Yesterday is gone, today is here, not sure about tomorrow. Today we are enjoying our new ‘Tumor Extractor’ even if it will only help us make waffles.

It is hope that let us stand problems…but our beliefs let us finds solutions.

Happy Sunday! And remember… ‘Always look on the bright side of life!’

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Cure Esophagus Cancer


The Purple Jacket and The Bow-Tie-Guy support research to cure esophagus  cancer. 

Stay tune to our blog for further information on how you can help!



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