Continue reading the LGBT Caregiving Blog Series Presented by ASA's LGBT Aging Issues Network (LAIN):
Sharing Care an Energizing Experience
Transcending Business as Usual
Complications of Transgender Caregiving
Caregiving in the LGBT Community
To be entrusted with the care of another is one of life’s greatest honors. 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 suddenly thrust into roles that they did not choose when called to care for a partner, spouse or loved one.
As a caregiver you feel as if you have no idea of what to do, so you do your best, following instinct 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, it’s uncharted territory. Two distinct relationships must be blended. The 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 intense emotions are likely to intrude on the relationship. Worry, detachment, fear of mortality, anger, fear of abandonment and having to live life alone, to name just a few, begin to intertwine with the idiosyncrasies of your existing relationship. They can lurk in a caregiver’s mind when faced with a partner’s life-and-relationship-altering illness.
Caregiving asks that you surrender yourself to the needs of someone else. Oftentimes 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 the meaning of love and commitment. Yet it’s not that simple, because caregiving can be an emotional, physical and interpersonal rollercoaster that is equally rewarding and frustrating.These emotions can test even the best communication and trust in a relationship.
Successful relationships are built on strong communication and trust. It is through honest communication that the essence of a partnership is revealed. This doesn’t change when you add the role of caregiver. 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.
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, and it’s been difficult for him to accept. Asking for assistance with mundane everyday chores undeniably adds stress to both parties.
Frequently reviewing and maintaining clarity in your roles becomes crucial so that your judgment and decision-making skills are based on fact instead of raw emotion.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.
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 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.
As part of an LGBT intergenerational couple, I have, on occasion, observed discrimination in our healthcare 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 smooth, but we can always hope for a gentle wind at our backs. That gentle wind is fortified by love, trust and commitment. Come to think of it, aren’t all relationships manifested in this way?
Chris MacLellan lives with his partner in Fort Lauderdale, Fla., and is a caregiver, freelance writer and blogger (www.thepurplejacket.com) studying Health Communications at Boston University.
This article was brought you by the editorial board of ASA’s LGBT Aging Issues Network (LAIN).
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