Monthly Archives: September 2012

‘I Do Not Need Any Help…I Have A StepLadder!’


Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship. Buddha

As Caregivers, more often than not, we pay better attention to the health and well-being of our caree rather than to ourselves; It just goes with the territory. Just the other day, I found ‘The Little One’ pulling out the stepladder to use to reach the upper cabinets (after all he is 5’5”) in our kitchen. Being the over protective caregiver that I am, I immediately balked at his use of the ladder. “What are you doing,” I said! “What does it look like I am doing, putting away the groceries.” He responded. “Not with that ladder you’re not.” The conversation deteriorated from there…

Safety is a big concern for all of us. One harmless fall can put an entire series of health concerns into play. Yet there is a delicate balance between independence and common sense.

Dr. Starcevic with ‘The Little One’

On Friday, ‘The Little One’ had his quarterly check up with his primary care physician, Dr. Starcevic. Dr. Starcevic continues to be amazed at ‘The Little One’s’ progress and stated…”We should review the pathology report because this is truly amazing!” I was gratified when she spoke about how important I was in the progress that he has made over the past year. Of course, he agreed with her 100%. This conversation really helped boost my ego and confidence.

‘The Little One’ highly respects Dr. Starcevic, and I do too. When ‘The Little One’ was in the middle of his chemo and radiation treatments last year, she was the one who determined that he needed to be in the hospital. Not only did she have him admitted, she put him in a wheel chair and took him to the hospital herself! We will never forget that act of kindness on her part.

The Famous Stepladder

During the conversation with Dr. Starcevic, ‘The Little One’ mentioned that he is “extra careful when he walks because he does not want to fall down and break a hip.” As I listened attentively to his words, I could not resist jumping in. “Why don’t you tell Dr. Starcevic how you like to get on stepladders, “ I said! They both turned to me (with different expressions on their face of course) at the same time: then the real conversation ensued about ‘The Little One’s’ safety. The conversation was lively and to the point; it is harder for ‘The Little One’ to dispute Dr. Starcevic than it is me!

Every caregiver wants to ensure that their caree is 100% safe. While I know I cannot be at home 24/7, I also know that I cannot control what ‘The Little One’ does when I am not home. (Like I can really control him when I am at home!) I can hear ‘The Little One’ saying, ‘I can put those cans on that top shelf, I’ve been doing it this way my entire life;’ I get that response and respect it too.

Even as we age, each one of us has that indestructible opinion of ourselves. We do not want to lose our independence, but we also do not want to lose our independence through a fall that is preventable. Sometimes we just need a different messenger, and sometimes we have to realize that our message needs to be tapered. In this case, we learned the meaning of both. Thank goodness for the wonderful work of Dr. Starcevic!

You see…We might have Cancer…But Cancer does not have us!

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Ken Blanchard's avatarHow We Lead

(This is the ninth installment in my twelve-part blog series A Leadership Vision for America.)

In my last post I stated that business and government can’t solve all of America’s problems by themselves. Ideally, our leaders in Washington would involve every sector of society in problem solving. The three sectors encompass nine different domains:

  • The Public Sector, represented by government, military, and education
  • The Private Sector, represented by business, arts/entertainment, and media
  • The Social Sector, represented by the faith community, nonprofit organizations, and families

When Eric Swanson and Sam Williams were working on their book To Transform a City, they come across a very interesting philosophy about problem-solving relationships. Paul Hiebert from Fuller Seminary discovered in the 1970s that when people come together to solve a problem, they often have a “closed circle” philosophy, or what he called a Bounded Set. A bounded-set thinker asks the question, “Do…

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Caregivers… A perfect way to help take away stress

Monarcares's avatarMonarcares Blog

The other day, my sister Vicki told me about this amazing short video she had recently viewed by Dr. Deepak Chopra on meditation techniques and how easy it is to meditate and instantly feel relaxed and refreshed. Numerous scientific studies show meditation is one of the best ways to relax your mind and body and enable you to counter the effects of stress. I decided to go to YouTube to watch some of his techniques and to get a sense of why his approach worked so well for my sister and hoping it would have the same effect on me. What I learned from having watched 4 videos was that our minds’ natural state is one of silence. My favorite technique video was from a segment that Dr. Chopra did on the Dr. Oz show. It worked immediately for me. The technique:  Dr.Chopra recommends sitting upright on a chair with a back rest making a conscious…

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“I’m between 81 and Death!”


If I had no sense of humor, I would long ago have committed suicide.
Mahatma Gandhi

We are three weeks into our FitPass program with Caregiving.com and the group is progressing along just fine. There are so many reasons why we put on weight; stress, poor choices, not seeing food as fuel is just a few of the topics that come up during our FitPass discussions on Monday night. While I have a long way to go in order to sort out why I have put on weight, I am pleased with the loss of 8lbs since we’ve started this program.

It just so happened that the ‘The Little One‘ had his own discussion on health and fitness with a nurse who came to visit him on Monday in our home. This visit was a courtesy of one of the many programs that his insurance plan has for him in Florida. (Hence another reason to be here full-time) While I missed the visit today, I certainly heard about it during our dinner conversation.

“I was given all these instructions on what I should be eating and how I should be eating. While I appreciated the concern and the information I was given, I just looked at her and said...I’m between 81 and death, at this point in my life and what I have been through this past year, what difference does it really make what I eat?” I’m sure he said this in a polite tone.

I mentioned ‘The Little One’s conversation this evening during our FitPass conference call and made the comment, “I’m the one who should have had that conversation today as it is my eating habits and fitness that is out of whack.”

The common denominator here is simple, it is about the perception of one’s quality of life.

‘The Little One’ can never be accused of not having a realistic view of his condition. Yesterday is gone — today is here — not sure about tomorrow. He has admirably lived by this motto for quite some time now. (Remember, he was given 3-4 months to live last October!) Like many people who are diagnosed with a life threatening illness, it’s not uncommon for a conversation to take place about Quality of Life. Quality of Life will have a different meaning for each one each of us. ‘The Little One’ has outlived everyone’s expectations; he is cognizant of what quality of life means to him. Who is it for anyone else to argue with him on this point? At this time in his life, eating one less scoop of ice cream or having one less helping of milk chocolate raisins is not going to do anything for him other than deprive him of a pleasure. I’d say ‘go for it and enjoy!’

Photo Credit: The Purple Jacket

The more I thought about his visit with the nurse, and the more I talked about it with our FitPass group, I realized that I have lost sight of what quality of life means to me. You see, as a Caregiver we get so wrapped up in the needs of our caree, we often forget about our own needs. That extra scoop of ice cream sure feels good when you’ve had a stressful day of Caregiving, work, life etc. However, that does not mean you have to have that extra scoop of ice cream every night!

Photo Credit: Wayne Dyer

In order to make healthy choices, we have to be aware of our options. With that, we have to recognize and own what quality of life means to us as an individual . For ‘The Little One’ that extra scoop of ice cream signifies an accomplishment and truly is a part of his quality of life; he has earned it! For me, my quality of life can not be tied solely to his, for in that, I lose my sense of self. (I.e. Weight Gain) How can I be a good caregiver if I am not taking care of myself?

While the nurse that visited our home on Monday was not there to see me, in reality the message she left…was solely for me!

You see…We might have Cancer…But Cancer does not have us!

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To all my Jewish friends around the world, a blessed Rosh Hashanah and a wonderful new year!

Jeffrey Carter's avatar

To all my Jewish friends around the world, a blessed Rosh Hashanah and a wonderful new year!

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I have always had a special place in my heart for Hospice.

Holy Redeemer's avatarCaring with Confidence

By Terre Mirsch

I stumbled upon another blog this weekend- one that immediately caught my interest because it is written by a hospice patient. In Til we meet again, Wanda shares her journey through hospice, checking off items from her bucket list and learning to live each day to its fullest. I found her spirit and willingness to openly share her journey with others inspiring; her zest for living is a force to be emulated by all of us. As I read through Wanda’s blog posts, where she discussed a variety of experiences and emotions, I was not surprised when she posed the question, “Is death the only way out of hospice?”

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Great Tips on how to say Healthy as a Senior

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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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What A Difference A Year Makes


Life is a succession of lessons which must be lived to be understood. Helen Keller
It was just one year ago that ‘The Little One‘ started his chemo and radiation treatments.  I remember one of my early blog posts during that first week of treatments entitled;  I’m Radioactive!  where ‘The Little One’ said ” I don’t care what you put into my body as long as it is going to help me beat this cancer.”

We learned that the first week of treatments is usually the easiest; we also learned six weeks later just how difficult chemotherapy was for  ‘The Little One.’  What they put in his body was dreadful, yet it helped stop the spread of his cancer cells. Now a year removed from the start of his treatments,  ‘The Little One’ still has his ups and downs, his good days and his bad days; we are enjoying life in the moment!   According to the American Cancer Society “Survival rates are often based on previous outcomes of large numbers of people who had the disease, but they cannot predict what will happen to any particular person.”  (“Survival rates for,” 01).

“The Little One” was fortunate that the cancer was local and had not  metastasized. We live life in the moment, enjoying each day as an extended stay, not worried about tomorrow. Given three to four months  to live, ‘The Little One” has far exceeded anyone’s expectations (except ours!).  In 6 weeks, we will be one year past that diagnosis! He has already beaten the first survival rate indicated by the American Cancer Society which is quite an accomplishment for someone of his age.

Through our Caregiving journey we have  learned the meaning of true friends, and what is important in life.  While each one of us deals with the reality of cancer in a different way, each one of us wants to look on the bright side of life. Yesterday is gone, today is here, not sure about tomorrow. It is our hope that lets us withstand problems; it is our beliefs that let us find solutions.

Phase II of our Caregiving journey starts this September as I will be learning  a new chapter in my life;  How to take care of me!   Sounds selfish, but it is the reality that I must face.  Each one of us deals with stress in different ways.  I dealt with the stress of this past year by over eating and over thinking.  I thought I had it under control, but I was in too much control. In many ways, I am better at taking care of others than taking care of myself.  That is a paradox and may be a bit overstated, but that is my reality at the moment. Thankfully I am in a place to deal with it and fix it.

Caregivers are so focused on taking care of their loved one (caree), that we as caregivers often lose sight of self.  To be a healthy caregiver, we do not have to surrender our individuality, we have to  celebrate it!  

What are the (my)  keys to being a Healthy Caregiver?

  • Health < Healthy Caregiving Starts With You!
  • <  Eat Healthy
  • A Achieve Your Personal Goals
  • L Live, Love and Laugh 
  • < Take Time for Yourself
  • H < Heal Your Soul 
  • < Yearn To Care For Yourself As You Care For Others

Checking in at 250 lbs on September 1, 2012 means that I have gained 25 lbs since arriving in Florida in March and have put on almost half the weight I lost 10 years ago.  There is no blame to go around, just a stark reality of a life lesson learned.  The Helen Keller statement is so true! “Life is a succession of lessons which must be lived to be understood.”

A lesson learned is just shelf-life if the lesson is not put into practice! 

In order to be a Healthy Caregiver, I have no choice but to take better care of myself.  There is no better way than to own it, realize it and blog about it.  As The Bow Tie Guy transforms into The Healthy Caregiver;  the lesson that  I have learned is that I have to practice what I preach.   As a proponent of a holistic life of body, mind and spirit, I must apply those principles to myself, too…DUH!

What good am I to myself and the one I care for if I allow my  health  to fail?   

I hope you will continue to join us on our new Caregiving journey!

Remember…

…We might have Cancer; but Cancer does not have US! 

 Survival rates for esophagus cancer. (01, 2012 11). Retrieved from http://www.cancer.org/Cancer/EsophagusCancer/DetailedGuide/esophagus-cancer-survival-rates

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