Tag Archives: LGBT Seniors

April 26, 2012 · 2:26 pm

Caregivers…”Never Alone”


One of the many things that I have missed while being away from Fort Lauderdale for the past four years has been congregation at The Sunshine Cathedral .  While attending worship services this past Sunday, the senior Pastor  Reverend Durrell Watkins,  preached on a topic that really hit home for me: his sermon was entitled, “Never Alone”.

“What I know is that prayer connects us to all the prayers of eternity and to all the people who have ever prayed and so the very act of prayer is a reminder that we are not alone, and if we are not facing the challenges of life alone, then hope, peace, and joy are always possible and that’s pretty miraculous.”   Reverend Durrell Watkins Sunday April 22, 2012.

Continue reading →

Leave a comment

Filed under Caregiving, The Purple Jacket

Tagged as , , , , , ,

April 19, 2012 · 8:10 pm

It’s More Than a Tree…


Never one to be a horticulturist, I am always intrigued by the variety of beautiful trees we have in this diverse country of ours.  Now that we are back in Florida, I am reminded about the beautiful foliage that Florida has to offer, especially the Palm Trees.  You really don’t get to see many Palm trees in St. Louis.

In Missouri, just like here in Florida, there is an abundance of pine trees.  In fact, we have a pine tree  in our yard where I am constantly picking up the pine cones that fall from the branches.
While picking one of the zillion or so pine cone, I noticed something at the base of the tree that caught my attention…

Intrigued by the green plastic sprouting out of the ground, I asked ‘The Little One’ to explain this phenomenon.  ( I did not know we could grow plastic in the ground and first thought that we might have come across the next great invention and I wanted to be sure we got the Patton on this discovery!)

“Herman planted that tree in 1976, that is the plastic bucket that the tree came in that is coming out of the ground.  Every time I see that tree, I think of Herman!”

WOW…talk about some powerful symbolism!   While Herman has been gone now for over 13 years, Herman’s tree grows tall and strong as a reminder to ‘The Little One” of a long and beautiful relationship.

Richard (a.k.a. ‘The Little One”) and Herman were together for 44 years and moved to Florida in 1976 before it was in vogue to move south.  Like us, there was an age difference between Herman and Richard.  And like us, Richard became Herman’s care giver:  funny how roles change in life when we age?

When Richard  cared for Herman, many of their friends came to help them with their daily task.  Herman often asked Richard…’What would I do without you?”

While caring for your love one or partner should be assumed, that is not always the case; especially for LGBT seniors.  According to SAGE USA  LGBT Seniors are:

  • Twice as Likely to Age as a Single Person
  • Twice as Likely to Live Alone
  • Three to four times less likely to have children to support them
The care giving needs for the LGBT senior community are enormous.  While society norms are (slowly) changing, many LGBT senior today are still living in fear, living in solitude, or afraid to reach out for help because of the fear and discrimination that they experienced when they grew up. However with programs like SAGE USA, The National Research Center on LGBT Aging : SunServe Social Service’s Noble A. McArtor Adult Day Care Center just to name a few,  heighten the awareness of this critical issue in our society which will help foster change.
Often times, the LGBT community is portrayed in a negative light which only heightens our fear.  Richard and Herman were together 44  years…YES, 44 YEARS!  
As a former staff member at The Sunshine Cathedral, I had the pleasure to watching life partners celebrate 30, 40, 50 years together.  There are thousands upon thousands of LGBT couples across the world who celebrate long lasting relationships that often go unnoticed. Many of these couples prefer to go unnoticed and that is OK as personal privacy is important and should always be upheld.
While those positive  stories of love and commitment often go left unnoticed in the main stream media,  many  LGBT Seniors who live alone, or as a couple often times have to fend for themselves as they age because of society ‘norms’ because of their fears that they experienced in their youth.     Bullying just does not happen in High School.  How can we break this cycle,  when will we break this cycle of hate and fear?
Being 81 and growing up in Brooklyn and living in Manhattan, “The Little One”  knows a few things about society norms, hate, fear and the such.   He lived through Stonewall and beginning of the AIDS epidemic; he has  experienced discrimination;  he experienced the draft board and the gay issue in the 50’s.  All in all, he would tell you that the LGBT issues today are no different than they were in the 50’s; equality, marriage, children, the whole package.  For him, what is different today is that these issues are now out in the open and people are talking about them.
Now that people are talking about these issues, the next key ingredient is to have the policy makers listen so that we can foster change in our communities and in our society. Communication will foster change, change will foster opportunities for service and care for everyone.      We have to do a better job in getting the word and the need out in a calm and pragmatic way.  Unfortunately,   listening is often an overlooked  communication skill.
As partners we don’t need a piece of paper to secure  our love or commitment for each other; but as a LGBT couple, we  need that piece of paper to get into hospitals to visit our loved one, we need that piece of paper to get access to so many common, taken for granted services  that have a direct effect on our health and well-being.  This list is endless, yet the need is there, especially for those  seniors, (no matter what side of the fence your on) who have no one to care for them.   Could this really be right in America today?
Come to think about it, we do have that piece of paper…it’s in its natural  form as a tree!  

Leave a comment

Filed under Caregiving, The Purple Jacket

Tagged as , , , , , , ,

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?

2 Comments

Filed under Caregiving, The Purple Jacket

Tagged as , , , , , ,

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!

3 Comments

Filed under Caregiving, The Purple Jacket

Tagged as , , , , , ,

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!

1 Comment

Filed under Caregiving, The Purple Jacket

Tagged as , , , , , , ,

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.

10 Comments

Filed under Caregiving, The Purple Jacket

Tagged as , , , , , , , , ,

February 2, 2012 · 8:17 pm

‘The Extreme Patient’


While ‘The Little One’ continues to show marked improvement while recovering from the trauma of chemotherapy and radiation, we move on to another calamity called sciatica. Anyone who has had back pain knows how debilitating it can be, yet to alleviate the pain we must be open to new modes of treatment.

On Wednesday we motored to InMotion Health and Wellness for a visit with Dr. Greg Neff to see if Chiropractic help was in order for his current ailment.  The ‘Extreme Patient’ as we see in this photo opportunity for his building fan club,  (yes KJ, the only thing missing is the Tiara!) decided to ride the wave and try out this new treatment.   Of course there was the debate…”This is not going to work”…’Why are we wasting our time”… etc, etc, etc.  While I try not to roll my eyes (at least noticeably  to others), we just continue on with our friendly banter because that is the way we communicate.

Communication is a funny thing; just like relationships.  It’s funny how the two go hand in hand.  Relationships are built on strong communication and trust.    Yet in communicating his apprehension to Chiropractic care, I knew that this was simply a way for him to let off some frustration.    Sometimes, you just have to let go!

As caregivers, we have to be mindful that while we are there in a supporting role, it’s not our body that  is going through the treatments.   How much can the mind and body take in such a short period of time?  I think that really depends on the person and their ability to communicate their wants, needs and desires.  And in the supporting role, the caregiver has to be mindful that what you might want for your loved one, may not be what they want; what a slippery slope!

It is through honest communication,  built on trust and love that truly reveals the essence of a relationship.  We’re glad that we have (and share) this trust and love as we continue on this journey to better health and happiness.

 

5 Comments

Filed under Caregiving, The Purple Jacket

Tagged as , , , , , , , ,

January 23, 2012 · 9:48 am

“Because They Are Nice”


As we continue to recover from the chemo and radiation therapy, we often reflect on ‘how things used to be’.  Always willing to be on the go, ‘The Little One’ has taken a wait and see attitude on many of the things he used to like to do.   While there has been steady progress in his overall health these past few weeks, we are really on a ‘day-to-day event planner schedule.

Crowds has never been his thing, even when feeling good.  So approaching his 81st birthday, I was puzzled at what might we do?  And…if we would be able to do it!  With a small gathering in Brentwood, ‘The Little One” was greeted by ‘The Sisters’ and a couple of friends from our Tuesday night group at Pietro’s.   (of course, one sister forgot to make it)

What struck me about the evening was not so much about the significance of the day, but rather the engagement in conversation of “The Little One.”    I will be the first one to admit that I can be a little worry wort and always have one eye out for him, yet on this night I glad that I did because I saw a person return to life in a way that was good to see.

You see, cancer can take the root out of your being. Cancer drains your energy, it drains your confidence and it drains your piece of mind.  It is easy to understand why so many people give up, that is why outside support is so important in the healing process.  What I saw on Saturday was a man who enjoyed talking about topics that were important to him, all removed from the thought of having cancer.  When the topic turned to the Virgin Islands, well…he was off and running. You can’t go through 81 years of life without having special memories of people, places and things.   It was a joy to watch him revel in the conversation.

When we talked about his ‘engagement’ at the gathering, I mentioned to him that it was great to see him involved in conversation that was important to him and completely outside to scope of health, cancer and the rest.  He too, acknowledged that it was a great experience, with lots of fun  and easy to talk to ‘because they are so nice.’

What “The Little One” learned on this evening is that its good for him to be in conversation on topics that he enjoys as it takes his mind of the health concerns.  What I learned is that I cannot be mother hen, worried about every step in the road.   We live day by day.   Often times we go through life with so many misunderstandings, so many unresolved conflicts and so many worries that seem unbearable.

Yet when you think about it, it is easier to get through the day simply when people are nice!

3 Comments

Filed under Caregiving, The Purple Jacket

Tagged as , , , , , ,

January 7, 2012 · 11:07 pm

Moving Forward


With no test scheduled until the middle of March, we look ahead thankful for the break from the radiation and chemotherapy, yet concerned as we move forward. Cancer takes so much out of everyone; its not a disease that leaves quietly, but rather lingers on in our mist.  Treatments are a necessity; aftereffects are unknown.

“The Little One” reminds me on a day to day basis  that he has lost a step or two.  Not wanting to admit it, but I see it too. We hold out so much hope for a full recovery, and in our mind and in our hearts, we know we have been given extended stay.  Why not make the most of it, even if its just a step or two slower?

Giving up control is such a hard thing to do.  (Where is that Tumor Extractor when you need it!)  One of the hardest things to do as a Caregiver is to give up control, but this is an essential element of being a caregiver.  We want to take control of the disease, take control of the loved one, take control of everything in our paths in order to provide the utmost care.  Yet it is when we give up control that we really care: What is here today, is gone tomorrow.  Yet in our thoughts and in our prayers, we only want to do what is best.

“The Little One” knows that he has lost a step or two; who wouldn’t after having 30 radiation treatments to go along with 6 sessions of Chemotherapy? I see it, too…but that does not detour us.  There will be good days, there will be bad days and there will be more days of beauty.  We can only go by how the day takes us, which in turn means giving up control and being free from what binds us!

2 Comments

Filed under Caregiving, The Purple Jacket

Tagged as , , , , , , , ,

December 16, 2011 · 11:54 pm

Goodness Gracious St. Ignatius!


If you have ever had the chance to sit by the beach at night to hear the thunderous waves while smelling the salty wind, you know how relaxing that experience is.  Tonight I write from beautiful Hillsboro Beach; relaxing, reflecting and thinking about the events of the long-awaited results of the day.

“Near resolution of a previously seen hyper-metabolic focus at the gastroenterology junction since the prior study, indicting an excellent response to therapy.”    Whew…that’s a mouth full!  

Of course the conversation with the oncologist did not start out that way as he was startled to see us sitting in the waiting room.   “Bern” he called out; “you look GREAT, I did not recognize you at first!”  (We both look at each other and said…’We’re not dead yet!) If he only knew how much ‘The Little One’ hates to be called, ‘Bern’…but not today!

In layman’s terms, the reports indicates that the majority of the tumor has been removed by the ‘intense’ treatment; what is left of the tumor we hope, will lay dormant for many years to come.

‘Cautiously Amazed‘ is two words that come to mind.

The oncologist recommended that ‘Bern’ live his life as he is able.  ‘Enjoy what you can, do what you want to do.’   You don’t have to worry, doc…The Grim Reaper will have to chase us, we do not intend to grow any daisy’s under our feet.    Out of the woods, yes?  When you think of it, how many of us are really out of the woods?   You know the story…death and taxes;  It’s all in the attitude, don’t you think?  We hope and pray that what is remaining of the (little) tumor leaves us alone, let it lie idle for many years to come.

PET scans are pretty magical and pretty revealing, too…

“There is a large calcified gall stone in the gallbladder.”    Oh Boy…here we go again, another health calamity  to deal with.  The gall stone explains the pain in the back; we’ll deal with this on Monday morning, enough is enough for one day.  Aging gracefully has nothing on us!

One of the key components to age gracefully is to have acceptance of your reality. Fiercely independent most of his life, “The Little One’ knows and accepts that he just can’t do it solo.  There will be some good days, there will be some bad days…it’s just the process of aging gracefully.

Unfortunately for many LGBT seniors, aging gracefully often comes with some difficulty.  In my opinion, our bodies age by our metabolism and what we choose to put in it; our mind ‘ages’ because of our personal experiences and understanding — it’s not all relative.   I’ve never been much of a political person and my theological training has always leaned more to the social side of dogma;  bias aside, should we all not be given the opportunity to age gracefully?

Unless you’ve lived in fear, you never really know what it feels like.  Many LGBT seniors live in fear of being outed, in fear of being mistreated, in fear of the type of care they received simply because of someones personal bias.  Some are fearful that their life long partners will be turned away at their bedside because of someone’s bias.   Think of being in a hospital, nursing home or an independent living center and living in fear because of someones bias?   The closet is no fun.

It’s concerning; having empathy for  bigot is simply a misplacement of morals.

While societal norms have adjusted in recent years, we are all products of our youth.  What is ‘accepted’ today, in most cases was not on the books when we were kids.  Imagine the climate that  an 80-year-old LGBT senior faced when they grew up in?  That is their reality.  We are all a product of the societal norms in which we grew out of; some grow out of it, some over come it, some don’t care about it, some live it their entire life, many are in fear of it.  Acceptance is a two-way street.

Having the experience as a caregiver himself  for  his partner Herman of 43 years for the last 9 years of his life, provided ‘The Little One” with a keen sense of his own needs as he ages gracefully.   (History aside, 43 years together is a feat, no matter what side of the fence you’re on!)     We are fortunate that we have not experienced bias in relation to health care, yet I carry my legal documents where ever we go because you just don’t know what or when you’ll need it.  However the legal documents don’t necessarily open all the doors to the closet.

We  started on this health journey just about a year ago when we had the first flare up with the esophagus while enjoying a meal with a number of friends in Indianapolis.  Over this past year, we’ve learned a bit about ourselves; we’ve  met some new friends, had some friends leave and we have grown closer.  In our diversity, we’ve all had one thing in common and that is  we’ve all aged gracefully,  I hope.  We can’t avoid the aging process, we just do it!

Care-giving will always be an honor; and just like his health…there are going to be some good days and some bad.    It is all about the attitude: every sunset should have its dream.

I think we can see Paris in the Springtime.

 

4 Comments

Filed under Caregiving, The Purple Jacket

Tagged as , , , , ,