Category Archives: Bow Tie

National Bow Tie Day!


Today is National Bow Tie Day. Have you ever seen someone who was wearing a bow tie who was not…smiling! Wearing a bow tie is like wearing a second smile!

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What ever you choose to wear today, make sure it comes with a smile!

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Be A Healthy Caregiver On Blog Talk Radio Tuesday at 1:00 pm


Join us on Tuesday November 6th at 1:00 pm for   ‘Be A Healthy Caregiver’ on ‘Blog Talk Radio‘  with our special  guest Michael Norfeet, Program Director of the Noble A. McArtor Adult Day Care Center in Fort Lauderdale, FL.

Respite care is essential in the equation on how to Be a Healthy Caregiver. Participation in Adult Day Care often prevents re-hospitalization and and may delay admission to residential long term care.  For participants who would otherwise stay at home alone, the social stimulation  and recreational activities may improve or maintain physical or cognitive functions. For Caregivers, Adutl Day Care Center provides respite care, enabling caregivers to work or have a break from their Caregiving responsibilities.

Join us on Tuesday November 6th at 1:00 pm for ‘Be A Healthy Caregiver’ on Blog Talk Radio by clicking here

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Amazement!


Photo Credit: Pinterest

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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Blog Talk Radio 10:00am EST LGBT Caregiving


Join me this morning at 10:00 am EST on Blog Talk Radio, host be Denise Brown as we discuss LGBT Caregiving

http://www.blogtalkradio.com/caregiving/2012/06/30/table-talk-chris#.T-75DBSGmaQ.email

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LGBT Seniors, Invisible No More


LGBT Seniors, Invisible No More

Discrimination and legal inequalities take toll on health and health care

05.25.2012By Barbara Moran
LGBT Senior Citizens, social policy, social work, Robert B Hudson, Boston University School of Social WorkRobert B. Hudson says that some members of the health care community “have treated LGBT people with condescension, and that in turn has often led people to put off preventive services.” Photo courtesy of the Boston University School of Social Work

In 2009, according to the U.S. Administration on Aging, about one in eight Americans was over age 65. That adds up to 39.6 million people, or almost 13 percent of the U.S population. By 2030, there will be about 72.1 million in that age group, or about 19 percent of the population.

While many studies have been done on America’s aging population, little research has focused on a group facing special issues as they age: the lesbian, gay, bisexual, and transgender (LGBT) community. Today’s LGBT elders have lived through decades of discrimination, which, it turns out, has huge repercussions as they age. Yet LGBT seniors have been largely ignored in policy on aging.

To help address this oversight, Robert B. Hudson, a School of Social Work professor of social policy and managing editor of the journal Public Policy and Aging Report, devoted an issue to the topic of LGBT seniors, with articles written by a range of researchers, service providers, and advocates involved with LGBT policy concerns. According to Hudson, the issue received more positive feedback “than just about anything else we’ve done.” In his introduction, he writes, “These individuals have remained nearly invisible to the community of advocates, researchers, practitioners, administrators, and politicians who associate themselves with the modern aging enterprise.”

BU Today recently spoke with Hudson about the insights gained from the project and what steps need to be taken to help aging members of the LGBT community.

Public Policy & Aging Report, Integrating Lesbian, Gay, Bisexual and Transgender Older Adults into Aging Policy and Practice

BU Today: Why did you focus an issue of Public Policy and Aging Report on the LGBT community?

Hudson: One thing we’re always trying to do is highlight under recognized issues, and this is one that really has to be near the top of the list. There is simply not much of a literature devoted to older LGBT people. There is a whole world of aging research and aging agencies that provide a range of benefits to older people, and there is a separate series of agencies and research that address the LGBT population. But they often don’t come together.

Why do you think that is?

Well, as a political scientist, I see it centrally rooted in bureaucratic behavior. The aging agencies are organized around classic aging-related issues like nutrition, social services, and legal services. The LGBT community has never had the same level of attention.

So what’s been the result of that gap?

Massive under service. When you look at the literature, LGBT access to health care is suboptimal. And that’s for two reasons: one is that some members of the health care community have treated LGBT people with condescension, and that in turn has often led people to put off preventive services. More broadly, LGBT individuals are often denied protections such as survivorship, visitation rights, and living wills, because the legal system does not recognize their living arrangements.

What health issues other than access to health care are specific to LGBT seniors? The Report notes higher levels of smoking, drinking, and rates of depression.

The mental health issues are the ones that stand out, and I think it’s something that the larger population does not appreciate. The stressors around discrimination in those communities have been so high for so long that substance abuse issues are much more widespread than the larger public thinks. People ought to know that discrimination has consequences.

The other issue to be mentioned is HIV-AIDS. And again, something that is underrecognized is that people who are HIV-positive are getting older, thanks to drugs that are turning HIV-AIDS into a chronic illness rather than a death sentence. But it is also true that people are contracting AIDS over age 55 at somewhat higher rates than before.

That’s the group you’d think has been the most indoctrinated about safe sex practices.

Indoctrinated, yes, but on the other hand, I think it’s something about aging. I think some people may say, “We’re old, we probably can’t get it.” But in fact, as you get older, the body becomes more fragile, and it may make transmission more likely.

Is there also a lack of safe-sex education, most of which seems targeted at young people, for older adults?

I think that has been the case. A lot of the public health initiatives within the LGBT community are aimed implicitly—if not explicitly—at younger people. The classic imagery we’ve had of older people in general is relevant here; they’re frail and alone or cut off in nursing homes, so they tend to get forgotten and excluded from all sorts of helpful interventions. And then members of the aging community, either through lack of interest—or in some cases, discrimination—may not want to engage with the older gay population. And so older LGBT folks really do fall between the cracks.

LGBT seniors lived through decades of discrimination, with homosexuality a crime or deemed a mental illness. The Report says 82 percent have been victimized at least once. With homosexuality so much more accepted now, it’s hard to realize what they went through.

Well, for somebody my age it’s not hard to remember. I mean, you could get in all sorts of serious trouble by identifying as gay or being seen as gay—bullying, violence, employment discrimination, health care, the whole gamut. I think most people now don’t recognize how tough it was for LGBT people to grow up in the world they did. And if you listen to today’s political debate, there are candidates out there who are inferring things about certain populations—including this one—that are pretty nasty.

What are the major impacts on seniors of coming of age with that level of hostility?

Certainly there are impacts in mental health issues, but also in economic issues. If you were discriminated against at age 20, 30, and 40, trying to get a decent job, trying to get promoted, trying not to get fired, hoping to be invited to the company family picnic, needing to go out on the golf course with the guys where the deals are being made, and they shun you because they suspect you’re not one of them—there are huge career ramifications.

So it really is a lifelong thing. In aging we talk about “cumulative advantage” and “cumulative disadvantage.” If you went to Andover and Harvard when you were younger, you have a better train ride than somebody who didn’t. And in this case, to have been knocked off career and health care and other rails early on by reason of discrimination, a trajectory that might have gone quite high will instead be flat. And in some ways it gets worse in old age. The passage of time amplifies the discriminations you’ve encountered over the course of 30 to 40 years.

The Report says LGBT seniors are twice as likely to live alone as heterosexual seniors, and four times more likely to have no children. How does this affect their support network?

It’s a huge issue. In the case of chronic illness, something like 80 percent of all care is provided by so-called informal supports—mainly family, notably wives, daughters, and daughters-in-law. This is a population that has much lower marriage rates and somewhat higher levels of disaffection from their biological families due to their orientation. There are fewer children, fewer spouses, and the extended family of aunts, uncles, nieces, and nephews may also be thinner. That is compensated for in part by friends, but the lack of family-based informal supports is a concern in this community.

The LGBT community seems to have exceptionally strong social networks, for just those reasons. But in this regard that doesn’t seem to compensate enough. Do you think this will change for the next generation of seniors?

I think over time, with greater acceptance of these communities, yes it will get better. But it’s going to be a long process. It’s interesting the extent to which same-sex marriage has taken hold in many parts of the country, which certainly wasn’t the case 20 years ago. But it’s going to be a very long process.

With gay marriage gaining acceptance and many more gay couples having or adopting children, is it likely their support networks will be strengthened?

I think that’s right, but I think it will vary a lot geographically. There are still a number of states where gays and lesbians cannot adopt children.

Do you think we’ll see gay- and lesbian-specific nursing homes at some point?

Interesting question. There are retirement communities—I don’t know their legal status—that certainly have attracted LGBT people. There are at least two or three dozen retirement areas in various parts of the country that are known to be attractive to members of the LGBT community. It wouldn’t be possible in most nursing homes because it would violate Medicaid reimbursement laws.

So what should be the top priority for the LGBT senior agenda? What should researchers and policymakers be thinking about to best serve this group?

On the policy level, I always think first of Social Security benefits. If you don’t have legally recognized dependents, you can’t get a dependent benefit. If you die and you had a partner, but you were not legally married—and to the federal government you can’t be legally married if you’re gay or lesbian—then there’s no survivor benefit.

In the health care world, prohibitions tied to visitation and to proxies and living wills are big things that have to be overcome.

But I think the biggest issue is in some ways the hardest issue to tackle, and that is acculturation and acceptance: being fully accepted as part of the range of American citizenry. LGBT elders may not be exactly like you, but there are lots of people who aren’t exactly like you, so let’s get over it, old and young alike.

View a copy of the Public Policy & Aging Report issue “Integrating Lesbian, Gay, Bisexual and Transgender Older Adults into Aging Policy and Practice” here.

Barbara Moran (COM’96) is a science writer in Brookline, Mass. She can be reached through her website. Permission to post this article on ‘The Purple Jacket’ was granted by Barbara Moran.

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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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A Trip to the Hospital


The phone rang and there was a trembling voice on the other end…”They are admitting me to the hospital”  The Little One said.  It was not difficult to hear the fear and anxiety in his voice; the psychological aspects of going through chemo and radiation are often overshadowed while in the mist of the treatments.   Even more unbelievable…his doctor wheeled him to the hospital emergency room herself! 

While no one really relishes a trip to the hospital, this was the best way for ‘The Little One’ to help regain his strength and take a break from the cancer treatments.  The chemotherapy and radiation has zapped his strength;  low white blood cell count and low potassium levels seem to be the culprit in this sordid mess.     All fixable items on the health dept chart when recognized early and treated properly.   We are thankful for the chemo-therapist for his swift action and recognizing that was something amiss.

Try as we might, we just can no longer do these treatments apart.  Independent as he is, these treatments are just not something that you can do on your own.   The issues are enormous;   house and doctors in Florida, job and family in St. Louis.  Yet one thing is certain…home is always where you are when you are with the one you love.

Last Saturday I met with a wonderful geriatric social worker in St. Louis by the name of Jeanette.  The hour I spent with Jeanette was worth its weight in gold.  One of the great lessons that I was reminded of during my visit last week with Jeanette is the need to network and explore expertise other than your own.  (Now is not the time to be a legend  in your own mind.)  There are more options available than meets the eye, it’s just getting to the right resources in time to make the proper decisions.  I am thankful for her knowledge and thankful to Sherrill Wayland from Metro SAGE St. Louis for the great referral.

As I have previoiusly mentioned, being a caregiver is a privileged…Yet in order to be a good caregiver you have to sometimes detach your emotions and explore knowledge and resources outside your area of expertise.  There is no need for the caregiver to go solo!  My visit with Jeannette reminded me that in order to think outside the box, I have to get out of my own world.

As we move into the final stages of the chemotherapy and radiation treatments, we are doing this together…side by side, one by one.  Now that I am in Florida, one decision is firm…’The Little One’ will no longer be ‘physically’ alone to go through these daunting treatments.  We look ahead with hope, with anticipation and most of all…with all your love, prayers and support!

 

 

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Back On the Same Page


Earlier this week I posted about ‘mixed messages’ that we were receiving from the radiologist and chemotherapy in relation to the amount of protein drink that the little one should be drinking on a daily basis while going through his cancer treatments.  I am happy to report that we are now all are on the same page, it was just a minor philosophical difference in their treatment plan that needed to be tweaked.   Treatment plans are just that… plans; sometimes the game plan has to be changed in the middle of the game.  The key to any change in game plan is to have the proper data at hand so that intelligent adjustments can be made.   It is not unusual for professionals that have diverse opinions on how treatment plans should be administered.  What is equally as important is for those professionals is to  have the ability to communicate and change the game plan in order to have a winning formula.  Every game is different, as is every patient. Sometimes you just can’t go by the book, you have to make an adjustment in the middle the game. Earlier this week I had not intended to be critical positions as not meant to be critical of physicians, but rather to demonstrate the need for communication and consistency within the team. The physicians are the “managers,’… the caregiver is the ‘coach,’… the ‘patient’ is the player in the field;  if all three components of the team are not communicating properly, then the team is in chaos.  The coach is often the advocate between the manager and player.  Advocacy is the main role of a caregiver:  I am happy to say that we are now all on the same page!

The news continues to get better for ‘The Little One’ as we have had a number of good days in a row.  Lots of energy, eating well and good conversations with the staff at both the radiologist and the chemo-therapist this week.  We believe that the tumor has shrunk as food is going down the esophagus with a little more ease.  One of ‘ The Little One’s” favorite food is baked chicken and  until this week,  ‘The Little One’ not been able to enjoy baked chicken because of the tumor in the esophagus, it was just to difficult to get through the esophagus path: Quite a relief to enjoy something so delicious as your favorite meal without the worry of  pain as the food travels down the esophagus. How often we take things for granted like eating a moist juicy piece of chicken, until that delight is taken away from you by this insidious tumor.

We have now completed three weeks of the five week program. While it’s been an uphill battle, we are pleased with the progress that has been made. The unknown causes fear and trepidation, we certainly experience that during these past few weeks. We know more than we did three weeks ago, and I am sure that we will learn more over the next two weeks leading up to the completion of the treatments. The treatment plan calls for a 30 day reprieve from chemotherapy and radiation after the completion of the treatments in two weeks.  Once we are past 30 days from the last radiation treatment, ‘The Little One’ will have to go through the same set of tests that revealed the tumor in August. These tests  will reveal what the aftercare plan will be; we are hoping for the best!

As we move forward trying to cure the physical aspects of this disease, we are keenly aware of what this disease does to the psyche. While cancer affects all of us, the emotional roller coaster of having cancer can only be realized by the person who has the disease.  While we hope and pray that the chemotherapy and radiation destroys and obliterates the tumor, we are mindful that in order to successfully complete these treatments, there has to be a holistic component to the treatment plan. That is where our faith our family and our friends come in because it is through your love and compassion that we are able to make it through these treatment days.

 

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