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
The Bow-Tie-Guy Tip of the Day: If you want to be someone else, change the way you think. #caregiving #leadership #Love #quote
Filed under Caregiving, The Purple Jacket
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.
Filed under Caregiving, The Purple Jacket
From one of my favorite blogger; thought provoking, peaceful and right on target. Well worth the read!
The Dalai Lama, when asked what surprised him most about humanity, answered:
“Man. Because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived.”
The human is a complex organism. Within the sphere of humanity we find the extremes, the hyperextreme and the simple. In a bombardment of culture, information, mental delusion and idealism, we tend to lose the very quality that makes us so special. We render the spirit mute in all of our frivolous pursuits of desire, resulting in a despondence that we continually deny.
The Dalai Lama is very accurate in his statement…
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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!
Filed under Caregiving, The Purple Jacket
Say your elderly parents live a few states away. They’re perfectly safe and happy as a rule, but mom’s been feeling a little off lately, extra tired, a bit achy, just not quite right. You can hear it in her voice when you call. Dad’s worried 
but not sure what to do next. He knows it’s a hassle to get a doctor’s appointment. In fact, it takes an average of 21 days just to see a doctor unless it’s a dire meet-you-at-the-emergency-department type of situation. So he doesn’t make any attempts to schedule a visit.
You work full-time, of course, but manage a few days off to get down to see them and find out what’s what. You know your mom: if she’s admitting not feeling well, if she’s actually complaining out loud, something is definitely wrong. And you want to go with her when she sees her primary…
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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?
Filed under Caregiving, The Purple Jacket
It is an honor to be quoted in another caregiving blog….
“When you are entrusted with the care of another human being, it is the greatest honor that can be bestowed on yourself.” Chris MacLellan
This was a sentence I read in Chris’ blogsite The Purple Jacket, a site in part focused on caregiving. When I read that I had to smile because although I don’t know his personal experience, that sentence resonated so deeply with me. Caregiving was an experience that I found magical and took me by storm.
After K passed away, the one word that kept going through my mind was “kindness”. Kindness for two reasons; one for the kindness I observed in the dying process. It was so gentle and caring I couldn’t help marvel at how perfectly it was designed. Secondly, for the kindness that was automatically and magically imbued into my own being, filling my actions and consciousness.
If someone would have described to…
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Make an Oncologist Smile.
The trip to the oncologist brought a big smile to everyone face. Amazed at the progress of ‘The Little One’ the doctor encouraged us to continue on this smooth path and don’t come back for six months!
Now seven months past the diagnosis and five months past the last Chemo/radiation treatment, we find ourselves on an upwards swing. We have much to be thankful for…
Wonderful family…
Fun times…
Great Friends…
Love comes in all shapes and sizes: don’t let love pass you by because life can change at a moments notice.
You see, we might have cancer… But cancer does not have us!
Filed under Caregiving, The Purple Jacket
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!
Filed under Caregiving, The Purple Jacket
The Purple Jacket 