Tag Archives: advocate

May 9, 2012 · 6:43 pm

‘In These Shoes Part II’


Photo credit: Wikipedia

Today we picked up “The Little One’s”  new shoes today  Hanger Prosthetic and Orthotics.    Unfortunately, the first choice of shoes ‘The Little One’ selected, somehow was not available in a therapeutic model!  These Stilettos would make Bette Midler proud as she would be singing…”In These Shoes” once she laid eyes on these shoes!   

Photo credit: ‘The Purple Jacket’

As we arrived in the office of  Hanger Prosthetic and Orthotics we were greeted by Shelley who assisted us last week with the fitting.  Shelley is great to work with, she pulls no punches, knows what she is talking about and has a care for all her clients.  It was a pleasure to work with her.

Within moments of sitting in the waiting room, the new shoes arrived and the Imelda Marcos of South Florida was back in his element.  Mindful of what Shelley mentioned last week that “these shoes” would feel a little ‘loose’ at first, ‘The Little One’ was quick to comment about just that!  “When I get a blister on the back of my foot from ‘These Shoes’ being loose, I will be back next week to show you!”   Of course, my laughing at this statement was is not the polite thing to do!

Shelley handled the comment with grace; by the time we were ready to leave, the Imelda Marcos of  South Florida had already had is eye out on another pair of shoes.  Should I have really have been surprised?   

The good folks at  Hanger really treated us well today.  There was a complete mix up with the co-pay, they admitted their error and allowed us to send in payment as we were under the impression that there was no funds due upon pick up of ‘These Shoes.’  Customer Service goes a long way in leaving a lasting impression on consumers.  I knew from my previous experience with Hanger that they were a model company whose mission is to help people lead a better life.   They proved it again today!  It goes without saying that when you are in the people business, you need to be about the people!  Hanger proved that again today.  And with that,  had one happy customer leaving their office today!

‘The Purple Jacket’

You see…we might have cancer, but cancer does not have us! 

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May 4, 2012 · 9:15 am

‘IN THESE SHOES?’


If you are a fan of Bette Midler you are probably aware of one of her (many) popular songs, one in particular is a favorite of mine…‘In These Shoes’. The lyrics are wonderful, funny and maybe a tad over the top for some. This favorite song of mine popped up yesterday while ‘The Little One’ was being fitted for diabetic shoes at Hanger Prosthetic and Orthotics. (You might be familiar with the movie Dolphin Tail, the good folks at Hanger worked on this project, their work is quite moving as is this movie) They are a great company!

Having  experience in this procedure with Fr. Orlando a number of years ago, I have been gently bugging ‘The Little One’ to obtain a referral from his PCP for a pair of these diabetic and therapeutic shoes. Finally, our day for our custom fitting was Wednesday!

You might ask…’Why these shoes?‘ It’s no secret that diabetics have an increased risk of developing foot problems. These custom-made therapeutic shoes offer support, relieve stress and strain on the foot and back while providing a better ‘walk’.  Watching “The Little One” walk over the past few months, I have grown concern with his balance and his foot ware. Asking him to change shoes, well…uh…hmm…change can be difficult, even with shoes.  (While the closet is full of shoes, some of them should really stay in the closet!)   Having these custom fitted shoes will only enhance his walking, while aiding him with better balance. Better balance means less chance of a fall.  I think you get the picture…

photo credit: Chris MacLellan

When the attendant noticed the shoes ‘The Little One’ was wearing…she said out loud…’You’re walking IN THESE SHOES’.  ———————————————————>

It was a jolt to the ‘Imelda Marcos‘ of South Florida; I mean these shoes are at least 20 years old!  Twenty years ago, ‘The Little One’ was stronger and could manage shoes like this which offered little or no support…but ohhhhh…forget safety, they do look marvelous!

Since we’ve been back in Florida, ‘The Little One’ has surprised me from time to time with ‘treasures’ like these shoes, which he has had in his possession for a long period of time.  Many of these ‘surprises’ have a story to them, or are connected to his partner Herman of 43 years.    It’s hard to just walk away from these treasures…. no matter how mundane I might think they might be.

 As the conversation with orthopedic professional continued, it was easier for ‘The Little One’ to hear and accept what he needed in foot wear for his own safety from a professional.  Always mindful of his safety and what is best for him, I also have to be careful not to over step my boundaries and ‘demand’ that he do something that he may not want to do.    You know the phrase…’you pick your battles.’ I knew that this  was one battle that would be won by the professional. (When it comes to personal safety, sometimes you do have to take a stand.)

As a caregiver, it is important for me to know as many resources as possible, yet we can’t know them all.  Having previous experience to build on, I was able to tell ‘The Little One’ that diabetic/therapeutic shoes are the only foot-ware covered by medicare   (You will need a referral from your PCP)  That opened the door for the referral and hence, he will have new shoes next week.  (To show his need, the orthopedic professional moved up his second appointment to next week because of his critical need for these shoes!)

The lesson of this story for me has to do more with how we see things that are important to us.  Shoes, trinkets, all of the collectibles, have a particular meaning to them.  We all have something in our possession that we can identify that has meaning to it.    We get attached to items for different reasons that are very personal, yet until you are IN THESE SHOES, who is it for us to tell someone to give up something that has meaning to it?

 One of the lyrics in Bette’s song is…”In these shoes? Oh, I doubt you’d survive.”  Bette is so right…In these shoes,  I doubt “The Little One” would he would have survived.  We can all survive and prosper when we are mindful of each other needs, react accordingly to those needs and care for those who cannot care for themselves.

When we care like that…we  can care in ‘ANY SHOES’

You see…we might have cancer; but cancer does not have us! 

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May 1, 2012 · 8:09 pm

American Society on Aging


I am pleased to share with you my article that was published today with the American Society on Aging. There are five wonderful articles, along with an introduction from Holly Deni who helped collaborate this project;  Finding Pride in Caring: LGBT caregivers answer the call from the community  This link will take you to Holly’s introduction where you can see all the wonderful articles written by LGBT care givers. It is an honor to be associated with these fine people! ENJOY

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April 17, 2012 · 11:23 am

Two Relationships in One


Recently I was asked to write an article on LGBT Care giving for American Society on Aging .   While the published date for article has not been determined; I was given permission to post my article on The Purple Jacket today.

This article has been a work in progress and I am quite honored to have been asked to write about something that has so much meaning for me.  For those of you who have been following my blog, and for those of you who know me personally, it is important for me to say that writing this blog has allowed me to find my voice and step out of my comfort zone.     In finding my voice, I have found an issue to champion.

While The Purple Jacket  will continue to provide updates with  our plight with esophagus cancer and our care giving experiences as life partners; moving forward, The Purple Jacket will advocate and focus on Health and Aging issues within the LGBT Senior Community.

Some might say…”We’ll just what are the issues and what makes LGBT Health and Aging issues different?”  Those are the exact questions and answers we will be pursuing  we move forward with The Purple Jacket.  Our readers will be surprised to learn how many LGBT Seniors are alone, who live in fear, who are in poor health and who are too afraid to ask for assistance.

The issues surrounding LGBT seniors and their health are to enormous to go left unattended.    As  someone who is in ‘the trenches’ as a care giver for my partner, I have a keen sense of understanding of what are the differences and why it is important to discuss these issues with the entire community.  The Purple Jacket  will explore and expand on those issues because “it is our hope that lets us withstand problems; it is our beliefs that let us find solutions.”

‘Two Relationships in One’

To be entrusted with the care of another human being is one of the greatest honors that can be bestowed on you.  It takes on meaning that is beyond approach.  New parents have nine months to prepare for the responsibility. Doctors and nurses undergo years of rigorous training for the work that they do.  But caregivers can find themselves thrust suddenly into roles that they do not choose when called to care for a partner, spouse or loved one after a diagnosis or an accident.

At a moment’s notice you become a caregiver, without any warning or time to think things through. You feel like you have no idea of what you are supposed to do, so you do your best, as you follow your instincts and common sense. You embrace the new reality. You simply care for the one you love.

When you become a caregiver for your life partner, a new and uncharted realm opens up.  Two distinct relationships must now be blended into one. The familiar partner from the past remains and is always present.  But now there is someone different on the scene – someone with a significant illness.

Suddenly, two people sharing a life together will need to face challenges that cannot be left unattended.  A whole set of new and hard-core emotions are likely to intrude on the relationship. Worry, detachment, mortality, anger, fear of abandonment and having to live life alone, to name just a few, begin to intertwine with the idiosyncrasies of your personal dynamics. They can lurk in a caregiver’s mind when faced with a life-and-relationship-altering illness in your partner.

Care giving is an intense experience that asks you to surrender yourself for the needs of someone else.   Often times you have to give up the things you love in order to care for the one you love.  Even though it may feel like a hardship, you make the choice because you know that it is what love and commitment is all about.  Yet it is not that simple, because care giving can be an emotional, physical, and interpersonal roller coaster that is both tremendously rewarding and frustrating. These emotions can surely test even the best communication and trust in a relationship.  The common denominator in the blending of these two relationships is communication.

Communication is a funny thing; just like relationships.  It is funny how the two go hand in hand.  Successful relationships are built on strong communication and trust.    It is through honest communication that the true essence of a partnership is reveled.  This does not change when you add the role of caregiver to the mix.  Communication has to be the focal point for conveying the wants and needs of the one who is ill, and this must be accomplished without losing the identity of either the partnership or the caregiver.  The term “delicate balance” takes on a whole new meaning.

Frequently reviewing and maintaining clarity in your roles becomes crucial so that your judgment and decision-making skills are based on sound facts instead of raw emotions. How much can the mind and body take when faced with so many changes in such a short period?  I think that really depends on the couple’s ability to safely, clearly, and honestly communicate their wants, needs, and desires as indicated by the partner’s health needs first and the personal relationship second.

While I have no doubt that caring for my partner (who has been diagnosed with esophageal cancer) has strengthened our relationship, it has changed our relationship at times, too.  I have seen someone who was firmly independent become dependent in certain areas of life that have been difficult for him to accept.   Stepping outside one’s comfort zone and asking for assistance with mundane everyday chores adds stress to both parties.  That is undeniable!

Caregivers often become the voice for the one who is ill. As caregivers, we have to be mindful that we are in a supporting role;   caregivers are the advocates, not the “deciders”!  In this supporting role, we must remember that what we want for our loved one may not necessarily be what the loved one wants.  What a slippery slope this becomes when the person you are caring for is your life partner!

As part of an LGBT intergenerational couple, I have, on occasion, observed discrimination in our health care system. Here again, personal political preferences may need to be deferred in favor of pragmatism because I am in the role of caregiver.  Successfully addressing and focusing solely on the needs of my partner is paramount.  There will be plenty of time to step up and do what is politically right once I have insured his proper care.

Life’s journeys are not often driven on smooth roads, but we can always hope for a gentle wind at our backs.  That gentle wind is always fortified by love, trust, and commitment.  Come to think about it, aren’t all relationships manifested in this way?

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April 4, 2012 · 12:46 pm

Excelling in Independence


As we continue with our transition back to Florida, it is hard to believe that we have already been here a month.  Yet,  after one month, it is easy to see the positive affects that this  transitions has had on ‘The Little One.”  It really comes down to one simple aspect of life…INDEPENDENCE.

One of the main issues that usually surfaces in a care giving role is that of independence versus dependence.  We all strive to keep our independence; it’s that physiological edge that makes us want to cry out for more.  Illness in general and cancer in particular, often lead to dependence.  Dependence can heighten the illness in which you are fighting to over come; dependence can in turn lead to depression, which all to often creeps into our physical and mental being.

While we miss our family and friends in St. Louis, ‘The Little One’ has gained quite a bit of his independence back since returning to Florida full-time.  There is a second car to drive, there are long-standing friends and family in the area, there is a house that he shared with his partner Herman for over 30 years, trips to the grocery store and an ocean right down the road; the list goes on and on.  

All to often we tend to forget that it is the simple things in life that mean the most.  When you are a caregiver, often times you have to give up things you love in order to care for the one you love.   It’s not a hardship, it’s not a problem, it is just something you do when you know it is right.

As I sit back and watch the remarkable improvement in his health, we know that life changes on a moments notice. We live in the moment, hoping that our decisions help facilitate good health and prosperity for everyone!  So far, we seem to be on the right track.  When I see ‘The Little One’ pulling out of the garage and off in his little buggy, I think…’how remarkable this truly is given the fact that six months ago he was not even driving a car, a prisoner to our home, dependent in the majority of things that he wanted to do.

Thursday we motor to the Oncologist for our next update; so far all the Doc’s have been pleased.  There is weight gain, there is added strength, there is a mark difference in personality…a personality of independence.

You see, we might have Cancer…But Cancer does not have us!

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March 26, 2012 · 8:05 pm

The Lamp Shade


Humor can take the edge off a number of situations, especially when dealing with serious health or care-giving issues.  For those who have followed our blog, you’ll know that we often use humor to get through many difficult days.  Reality is what it is; hard do change, sometimes equally hard to deal with.

Moving can be stressful too, yet in a different way.  Sooner or later, the last box will be unpacked, the last picture will find itself on the wall, everything will find its place!  Even a miss-placed Lamp Shade.

Upon the arrival of the furniture and the mounds of mess and stress that followed,  I was left to ponder about caregivers who are often under stress and burdened by their task at hand.  You see, sometimes in the heat of care-giving,  we can lose sight of the fact that the one who is being cared for is… ill.

When your ‘patient’ says something out-of-turn, don’t blame the ‘patient’… blame the disease.  When your ‘patient’ does not feel like eating, don’t blame the ‘patient’…blame the disease.  When ‘the patient’ is just not feeling up to doing something, don’t blame the ‘patient’…blame the disease.  Caring is a daunting task and the caregiver often loses themselves in the process, and you know, that’s OK because it’s not ‘the patient’s’ fault…it’s the disease.

Just as Lamp Shades protect the bright lights of the bulbs of which they cover, care-givers do the same as they protect and ‘shade’ those for who they care for.  When the light burns out, we don’t blame the shade, we blame the bulb. When illness plays havoc with our loved one, we don’t blame the patient, we blame the disease.

Image  When we are focused on the task at hand, mindful that it’s the disease, not the patient…every ‘lamp shade’ finds its proper place, with love, tenderness and commitment.

We are blessed by the good health reports we are receiving in Florida and look to continue to bring great ‘shade’ to those around us!

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February 13, 2012 · 8:30 am

The Heart of Caregiving


Cancer came upon us in one full swoop.  Often times, we get into situations that are beyond our control…’things’ just happen, like Cancer.  Care-givers are often thrown into their roles on a moments notice.  Cancer or other debilitating illnesses do not arrive by invitation, they just show up at your door unannounced. When you think about it, no one wants their loved one to be ill, no one wants to see their parent, spouse, child or best friend ill.  Unfortunately, illness is a part of life that we all have to deal with.  At a moments notice you become a care-giver, without any warning, without any preparation, without any idea of what you are supposed to do next.  All of a sudden you are responsible for someones well-being because of their illness.    Care-giving is a tremendous, rewarding  and sometimes a frustrating experience, yet care-giving has meaning to it that is beyond approach.

While I do not often revert  to my theological training, I am reminded of the Corporal Works of Mercy which are, simply stated, the seven practices of charity towards our neighbor…

1. Feed the hungry: 2. Give drink to the thirsty: 3. Clothe the naked: 4. Shelter the homeless: 5. Visit the sick: 6.Visit those in prison: 7. Bury the dead.

I see the Corporal Works of Mercy as a job descriptions for caregivers.  There is an art in accomplishing these task and  and in accomplishing these tasks, one has to have a caring heart.  Care-giving is not a role for the faint of heart, it is not a role suited for everyone.  Just as we all have different talents, skills and life avocations, being a care-giver is no different.  The tryouts are usually on the fly and without much preparation, however care-giving is bound to have a profound effect on all involved in the experience.

One of the most important components of being a care-giver is that you  have a caring heart.  Sound kind of silly doesn’t it?  But it is true!   How many other ‘jobs’ monitor the feelings inside your heart?  Being a care-giver is not a ‘job’ to those who do it, it’s an avocation.    If  you are not truly concerned about the person you are caring for, then it might be a good idea for you  to take a close look at what you are doing for that person. There is a high rate of burn out in care-giving;  care-giving is an  intense experience where you often surrender your self for the needs of someone else.  Finding that happy balance is truly a slippery slope. The art of care-giving always starts with a feeling from inside heart.

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February 5, 2012 · 10:45 pm

A Word from The Little One


Tonight at dinner we were chatting about our blog as I have been asked to write an article for a national publication on Care-Givers and Care-Giving in April (more to come on that exciting news).  The Little One wanted me to share these words with you this evening…

“Thank you for reading ‘The Purple Jacket” I hope that in reading Chris’ account of my fight with esophagus cancer  that you don’t give up hope, share in the joy and comfort that you can reap from this wonderful thing, a dedicated caregiver. My siblings have pass on; not only is he my caregiver, he is my partner I would be all alone with out his dedication and love.  Even though cancer has struck me, for the second time, I find joy and compassion being with my partner and caregiver.  Go through life with a strong will, even at those darkest times, there is a light at the end of the tunnel.   Bernard Richard Schiffer 2.5.2012.

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December 25, 2011 · 8:37 am

Thankful!


We have plenty to be thankful for today on this beautiful Christmas morning and wanted to share our gratitude with you.

Our journey has just begun; pleased with the outcome of the pet scan we still have a long way to go in order to build up strength in order to keep the big ‘C’ at bay. We have quite a bit more work to do!

For all those who are experiencing the trauma of cancer in your life know of our heart felt love and support.

For all the care givers know that your love and commitment never goes unnoticed!

Merry Christmas to all and
‘Thank You’ for reading ”The Purple Jacket.’ We look ahead with anticipation, courage and thankful for the love and support of our family and friends.

We have cancer; but cancer does not have us!

Merry Christmas, Happy Hanukkah and peace and love to all.

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December 12, 2011 · 9:36 am

PET Scan… Day One


 

Our drive to Florida was uneventful; today all the events begin.

“The Lit20111212-095007.jpgtle One” is now in enduring his second PET scan which will take just about an hour and a half to complete. As we left the house today (sunny and 80 degrees in Florida…what were we thinking four years ago!) we talked openly about the events of this week and how we will go through this process together.

I am amazed at how brave he is as he goes through these tests. For someone who claims to be non-spiritual, he is grounded in his thoughts and accepting in his realty. There is a calmness in him that is truly remarkable: I am honored to be a part of this process.

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Being in a ‘mixed’ relationship (Jewish /catholic) which also happens to be inter-generational (May to December) poses for a lot of interesting experiences and conversations. Yet in all my years of seminary training and ministerial experiences, I have never come across someone like ‘The Little One’ who has dealt with his health calamities like he has.

There are no lamentations, no blame; just an acceptance of the reality of life. For someone like me who has a bad habit of worrying about things that I can’t control, his sense of spirituality has been a lesson that no seminary was able to teach me.

At the end of this week, we will have a better understanding of where this chapter in our lives is leading us. We can’t control the results and you know, that’s OK because the best way to deal with the results is with a clear sense of reality. The serenity prayer comes to mind!

Life is meant to be lived; don’t let love and commitment pass you by, no matter what shape or form it is in.
When there is love, there is a sense of spirituality that is not defined by religious beliefs or society norms. It’s just two people, who’s roads collided to be as one.

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