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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As we walked into the office at the radiation oncologist this morning TLO proclaimed to the staff ‘ I’m here, let the games begin!’ Of course his ‘proclamation’ was greeted with a big smile by the staff as he sat down in the waiting room waiting for his time in the radiation ‘whirlybird!’ We are trying to find as much humor as possible as we can during this trying time. 
As we have progressed through the first few days of the radiation treatment, we know that we are just starting to scratch the surface to our emotions, our fears, and our determination. Today’s session has taken quite a bit out of TLO as evident by how terrible he is feeling this afternoon. We know that Cancer is an unwelcome guest in our home, but this unwelcome guest has brought with it the ability for us to draw closer, to dig deeper into the surface of our emotions and fears, while strengthening our determination. I guess there is something to learn from an unwelcome guest!
The Purple Jacket 