Tag Archives: SAGE

LGBT Caregiving Blog Series


I was privileged to have been had one of my blog post published recently  in the  American Society of Aging; LGBTcaregiving section. ASA’s Aging Issues Network (LAIN) is a great source for LGBT Caregiving and Caregivers.

‘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 revealed.  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?

We might have cancer, but cancer does not have us!” 

Below are links to other LGBT Caregiving articles which are worth your read.  I am honored to be a small part of this wonderful group.  I encourage you to bookmark American Society on Aging, especially their LGBT Caregiving Blog Series.  (The ASA logo above will take you to the ASA website)

Finding Pride in Caring: LGBT Caregivers Answer the Call from the Community
By Holly Deni

Sharing Care an Energizing Experience
By Nancy Bereano

Transcending Business as Usual
By Paul R. Blom

Complications of Transgender Caregiving
By Julie Ellingson



Filed under Caregiving, The Purple Jacket

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!  

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Filed under Caregiving, The Purple Jacket

A Night with Opera St. Louis

Wednesday night we had the pleasure of listening to a couple of performers from Opera St. Louis. With ‘The Little One’ being a big fan of Opera, I knew we were in for quite an enjoyable evening.

As we were preparing for the festivities, I heard the ‘The Little One’ say in the distance…”well, this should be interesting”. Curious, I peaked in to the bedroom to see what he was he was talking about; his dress pants!

Once I saw him holding up the pair of pants, I knew exactly his concern. With a weight loss of over 35 lbs, we both knew these dress pants were not going to hug the hips.

Thank goodness for suspenders!

When he put the pants on, we were both amazed at how much weight he has lost. He has easily lost four pants sizes! (I now need to do the same)

While his weight loss is good for his overall health, they way it has happen is certainly not one of those fad diets you see on TV!

The second PET scan has now been scheduled for December 12 in Fort Lauderdale; we will be heading south in just a little more than a week. We are anxious to see where we stand with the tumor and the only way for that to happen is to conduct the follow-up PET scan.

While the PET scan might give us the physical facts of the tumor; we will not be held back by the results. We are moving ahead with our heads held high.

You see, we might have cancer… But cancer does not have us! We are putting money away for a trip to Paris in Spring of 2012. I have never been, ‘The Little One’ has been three times!

Live each day like it is your last; care for those who are always by your side!





Filed under Caregiving, The Purple Jacket