Posted in Having a Voice in Healthcare, Partnerships

Doctors Providing Hope

Every so often I come across a story the renews my faith in human nature.  It brings me peace-of-mind to know that there are still medical professionals out there willing to help someone without trying to make a buck.  ABC World News with Diane Sawyer featured Dr. Andy Moore and the medical professionals at “Surgery on Sunday” as their person(s) of the week.

“Surgery on Sunday” is in Lexington, KY where the team of medical professionals offers their surgical services once a month for those who need surgery but are uninsured.  The staff providing the services couldn’t be more humble about this magnanimous service they provide to the Lexington community.  One doctor interviewed said that the “thank you” he receives from a patient he performed surgery on is uplifting and fills his soul to the brim.

The medical professionals at “Surgery on Sunday” feel honored to provide this service to the community.  It’s actions like this that prove that a community based approach to healthcare is not only possible, but works well.  It provides a safety-net for those who are not eligible for state or federal programs like Medicare of Medicaid, thus relieving the stress to those individual in need of surgery.

A program like “Surgery on Sunday” is replicable.  It isn’t rocket science; it takes medical professionals volunteering once a month and a surgical location to make it possible.  We all have to remember that there are many ways of being paid, and one is gratitude.  A program like this not only helps those who need surgery, but extends hope to potentially millions across the country who may someday benefit from the model created by these heart-driven medical professionals.

I hope that you will send all those affiliated with “Surgery on Sunday” your best wishes and congratulations on their triumphant success.  I hope you’ll refer your medical professionals (if you have one) to the website, to show your medical team what can be accomplished to serve your own community.  Last but not least, please hold hope in your heart for what’s possible when inventive, caring people put their body, minds, and spirit to work to create something that fills a huge gap in our current healthcare system.

Posted in Partnerships

Holding the Pain

It’s amazing how certain things in our lives keeps showing up.  In my conversations for the past twenty years with people like you, those newly diagnosed with a chronic or life-threatening illness, the same words and phrases continually appear.  Our human experience is shared and our emotional and spiritual lives are ways we can express ourselves to others.  Here is something I wrote back in 1997 that I found this morning:

July 2, 1997

What is it that makes us ready to open our heart to a pain which is so pure and genuine?  Being incorporated into someone’s life the way a cat hair may get crocheted into an afghan.  The opportunity to bond with an individual or family in such a way that when the person is alive you’re a godsend and afterwards all you represent is death and emptiness, or do I?   What else might I be?  I hope I can restore people’s faith in human nature.

Somewhere when a person has been violated or betrayed, either by someone else or their own body, I arrive and ask them to trust me, to help them navigate this new life.  I try to reverse or make better all the ills they have suffered in their life or are currently suffering.  My attempt is to help the person clean out the wound and be able, once again, to connect to the human essence of compassion and connectedness.

I like awake wondering how to relieve a person’s suffering.  As I write I realize it is about bracing myself for a bumpy roller coaster ride which will continue until the calm of the coaster station arrives at which point the person has died.  May I have it backwards, perhaps the roller coaster ride doesn’t start until the person dies or maybe it starts the moment the doctor says, “I’m sorry to tell you…”  I guess we need to look at who’s at the control panel–maybe we’ll both be surprised.

So the real question becomes, “How do you measure a year?” as the question is posed in my favorite musical RENT.  Maybe love is the only yardstick to use anywhere.  That being the case, can I be on the lookout for such a blatant experience?  Will I know it as it happens or will I need to look back and say; this was a sign of love.  A measure of that person’s trust, not to do harm, faith to be true to my word and genuine in my emotions throughout our journey together.

So for now I will get in the car with you on this ride.  I may not be able to take the fear out of the ride, but maybe it’s really about being able to scream with you as we go over the huge drop on the roller coaster–that freedom to release and have witness to the experience.

I offer this post with admiration, love, and support for your journey.

Posted in after the diagnosis, Partnerships, Relationships

The Dynamic Duo

Welcome to Caregiver Friday!!!

We love superheroes!  We find the idea of fighting evil and protecting justice an exciting prospect.  Television writers must know this because it shows up on television all the time and in comic books and movies.  There’s something special about the relationship between the superhero and his/her sidekick.  They have an undeniable bond that serves the cause and deepens their personal relationship.

Whether you want to take on role of superhero or leave that to the person fighting the illness is up to you.  There is no denying that together you have the knowledge, wisdom and strength to achieve amazing things.  One of the key aspects of the relationship that builds over time is trust and loyalty.  Our tendency is to support the patient at all costs and protect them from harm.  Now I’m not saying you should take a bullet for them, but there are times that you can shield them from news that may interrupt their determination.

As the caregiver/wellness partner you are often the public relations end of the duo.  You may become the spokesperson and the advocate.  You may need to present the patient’s decisions or requests depending on their health and their personal level of vulnerability.  You are also the filter that information flows through so the patient can hear it clearly and concisely.

The other component of being part of this dynamic duo is the ability and willingness to ask the hard questions and bring up the sensitive topics.  For some, the hardest and most sensitive questions are around end-of-life care.  Unless there is another family member willing to step in, you can’t abdicate this responsibility.  If you don’t feel comfortable bring in a professional who can facilitate the conversation and walk you through the process.

The relationship between patient and caregiver is sacrosanct.  Whether spoken or implied there is a covenant between the two of you and your relationship during this time of illness is built on that covenant.  I’m not suggesting that you shouldn’t question or challenge the patients decisions and assumptions, but it’s like the rule in parenting;  disagree in private and come out to the world with a unified front.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Partnerships, Relationships

Reclaim Your Life

Welcome to Caregiver Friday!

I’ve written numerous entries about how your life changes when you become a caregiver/wellness partner. I’ve discussed your roles, your activities, and how your life changes.  I’ve focused on the change and not on the status quo.  You are the status quo.  Your life, your interests, and your ambitions are still yours.  So I guess the real question I’m asking is, “What’s Still Yours”?

They say that possession is nine tenths of the law.  What do you still possess?  How is it that so many caregivers abandon their lives.  I’m not talking about doing for others because I believe that to be magnanimous, and the greatest gift we can offer another human being.  That being said, let’s take a moment for real honesty.  What are you whispering to yourself in private, in the middle or the night, or in your dreams about what you want your life to resemble.

I could rely on cute sayings or use big theories or human motivation, but I want it to hit closer to home for you.  I want you to take a deep breath, get quiet and ask yourself, “what do I want my life to look like”?  It’s not a selfish question; it’s an honest question.  I will use one frequently used phrase, “life is too short so don’t waste it”.  Now I know I’m going to get some e-mails saying that you don’t feel like caregiving is wasting your life.  That’s not what I’m saying by a long shot.  What I am saying is that if it’s all you do then are you hoping for sainthood after your own death.  Personally, I’m the wrong religion and I haven’t performed, as of yet, three miracles so since I’m already out of the running for sainthood I’ll have to settle for living my humanity to its highest level.

We seem to think that caregiving is a black or white discussion.  In order to be a good caregiver it’s essential or mandates that you sacrifice your own needs, desires and wants because there is a greater urgency and force that lures you away from your own life.  I believe on some level that many caregivers, especially those  who have been offering care for a long time have forgotten how to live their life.  I’m opening the dialogue because as Socrates said, “The unexamined life is not worth living”.  There you have it, the quintessential catch phrase from one of the worlds greatest thinkers.

The first step to reclaiming your life is examining the life you’re living.  It’s about keeping your inner fire burning through the caregiving process.  Take a cooking class, go paint in the park, read a good book without interuption, go ice skating or dancing, but whatever you do make it yours.  Believe it or not the person you’re caring for will live without you for a couple of hours (yes, you may need to find respite care so the patient isn’t alone).  Our love for another is irreplaceable, but actions we do for another can be done by anyone.

It makes me think of the parent, especially mothers, who make their children their whole lives.  When the children leave home they have to first begin to form an identity.  Can’t we be more than one thing at a time?  As humans don’t we have the capacity to hold two ideas in our consciousness simultaneously?  Aren’t we permitted to be caring and nurturing and selfish all at the same time?  Doesn’t doing one makes the other parts of us stronger?

I’ll keep thinking about this issue because I believe there are a lot of misconceptions tied up with caregiving, sacrifice, duty, expectations and service.  What I’m sharing aren’t anything but questions for you to ask yourself what fits and what doesn’t.  It’s about making the thoughts your having in secret a bit more conscious and real.

Do you want to reclaim your life?  How might you do it?  What steps have you taken along this journey?

Posted in after the diagnosis, Caregiving, coping with life threatening illness, Emotional Health, Having a Voice, living with chronic illness, Partnerships

Creating a New Mantra

Welcome to Caregiver Friday!

Ever feel that once you assumed the role of caregiver that you automatically became a magnet for every negative emotion in the world from those around you?  Ever wonder how things you did every day before the patient got sick that were fine are now the bane of their existence?  Ever wonder why you have become the human fly paper for the negative emotions expressed by the care recipient?  I could go on and on but I think you’ve got the point.

The truth is that the care recipient (the patient) is going through enormous turmoil and they are, as the Buddhists say, leaking.  They have a reduced capacity to govern their feelings because they are overwhelmed…and so are you.  The difference is some say the illness is a “get out of jail free card” for their behavior.  The truth of that statement doesn’t matter, the outcome is what matters.  So what’s the new mantra for caregivers?

“This Has Nothing To Do With Me”

The reason that the emotion is directed your way is because you are there.  You have devoted your time, energy and compassion to assisting the patient in getting well.  It’s not that they don’t appreciate it, but if they spoke to or treated friends the way they speak and treat you at times those folks would be gone.  The first question to confront is what truth is there in the complaint.  We’re all at fault at times so keeping your side of the street clean is primary.  This doesn’t mean you should hold back how you feel, but definitely choose your battles.

The mantra “This has nothing to do with me” should be tattooed on the palm of your hand.  You’re going to need a constant reminder so if you’re not into tattoos then consider post-it notes on the mirror of your bathroom, by the telephone or by the computer.  It’s going to take some time to say that fly paper is all dried up, the magnet turned off and the complaint department closed.

Understand that this doesn’t mean you stop caring for the person, but you are refusing to take on their emotional turmoil when you have enough of your own.  It’s okay to set parameters for dialogue.  Discussions are good, arguments don’t serve any purpose.

Some may say that you shouldn’t judge a person before you walk a mile in their shoes.  We’re not judging the person with the illness.  We’re creating a container of understanding by visualizing their leaking emotions.  For some of the folks you’re caring for it may seem like a breach in a nuclear reactor so you may need to say your mantra over and over again.  It’s kind of like the 12 step programs and the serenity prayer.  When people need a moment to regroup they say the serenity prayer to ground themselves.

I hope you can see that by accepting this new mantra you’re not becoming uncaring; in fact I think you’re extending your care because now you have a new level of understanding.  Instead of feeling bogged down by the anger or frustration by the patient you can chalk it up to a breach in the nuclear reactor.

How are you handling the frustration expressed by the care recipient?  This is an important aspect of caregiving because left unresolved it leaves you, the caregiver, feeling unappreciated and that leads to resentment.

If you have a mantra that gets you through your caregiving experience please share it with us.  The goal is to create a strong caregiving community full of resources and support.

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Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Partnerships

Lessons from Oprah, Jenny McCarthy and the Warrior Mom

Yesterday Oprah’s choice of guest hit it out of the ballpark.   A woman, Monica Jorge, who had everything going for her, a loving fiance, a 9 year old daughter and she just gave birth to a baby girl.  Unfortunately the story takes a huge turn for the worse.  Right after giving birth they learn that the woman has contracted a flesh eating bacteria.  In the end the new mom along with internal surgery had both arms and both legs amputated.   At this time she’s had 37 surgeries and isn’t finished yet.  Let’s look at the lessons we can learn from Monica as it relates to anyone facing a chronic or life threatening illness.

1.  Follow the Chinese proverb, “Fall down seven times, get up eight”.  Perseverance is crucial for anyone facing a health challenge.  Having the capacity to explore your limits will get you through the challenge.

2.  Unearth deep in your soul what your priorities are.  If your family is a priority understand that not having you around will be a bigger detriment than the struggle with your illness.  If your work on this earth isn’t done then make sure everyone around you knows that you still have work to do, include the Universe in on that memo.

3.  We all need champions.  Jenny McCarthy works extensively promoting information and policy reform for families facing autism.  Know who the champions are that face the same health challenges.  Here are just a few: Cancer: Lance Armstrong; Parkinson’s: Michael J. Fox; Multiple Sclerosis: Montel Williams; Spinal Cord Injury: Christopher Reeve; Post-Partum Depression: Brooke Shields; HIV: Rudy Galindo.  These individuals bring recognition and a spotlight that can bring money for research and treatment.

4.  The human spirit is larger than the human body.  If we look at the challenges Monica faced there was a well of energy that was superhuman.  She was able to go down deep and summon the courage and conviction to not only beat the illness, but to get through rehab in record time so she could care for her family.  Loving connection is that force that recharged her battery and defined her mission.

5.  Throw pity out the window.  This isn’t to say that having the “why me” moment shouldn’t be a part of your life, but give it a container and set limits.  You have a lot of work to do and the pity pot will drag you down, lower your immune system, increase depression and create a scenario where pessimism reigns supreme.  If you need to express those feelings set a time during the week with a finite amount of time and go to that place and then get back to the job at hand…getting well.

Find a hero that you can relate to.  Monica’s story was so big and so amazing but I know these kinds of stories exist in your own neighborhoods.  There are lots of amazing people who are fighting illnesses in your community, you don’t have to look far.  Overcoming adversity is the name of the game.  Come up with a plan and fight for the life you want.  It may not be the life you intended, but it’s all you got so do the most with the resources you have.  You’re a miracle, so live like one!

Posted in Anonymity, Caregiving, coping with chronic illness, coping with life threatening illness, Having a Voice, Living with Illness, Partnerships, Personal Conviction

Politics and Caregiving

Welcome to Caregiver Friday the Sequel…

I obviously got a bit confused yesterday thinking yesterday was Friday.  Well I’m here to tell you it feels like Ground Hog’s Day reliving my own Friday, but here it is.

We’re truly in the midst of the political season.  I want you to consider how you will use your vote now and in November.  This isn’t about party lines, political parties or specific candidates.  This is about your searching your soul as a caregiver and deciding how your needs will be addressed in the coming years.

Ask yourself the following questions:  How will health coverage be handled?  As a caregiver the amount of health insurance/coverage will have an effect on how far your money goes?  Who will put more money into research for the disease the person I’m caring for is challenged?  This has an impact on the likelihood of a cure being found or at minimum new treatments that could increase the patient’s quality of life and decrease the stress on you as a caregiver.

Research how the national organizations devoted to your disease are positioning themselves in the political arena.  Understand what their concerns are and do they match yours.  Remember that all politics is local no matter the scale of the election.  Politics is certainly subject to the ripple effect; the pebble drops and ripples out to the edge.

We often hear patients speak up for their needs in the political arena, but what about you the caregiver?  You’re not merely an after thought, you’re in the thick of the medical arena so your voice has to count.

Truly, this isn’t about one political party or another.  This is about your voice, not being anonymous and getting your needs met so you can increase your quality of life as well.  How will you use your voice?  Share with us how you hope to make an impact on the coming election(s), all of them, national down to the local!