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!

Posted in after the diagnosis, Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Self-Nurture, Uncategorized

Patience is a Virtue

Welcome to Caregiver Friday!!!

Ever notice that we are a culture that is always in a hurry?  Think of the driver on the freeway who rushes past you only to be stopped ahead by the same traffic you’re stopped by.  We rush to get to places thinking that if we get there first we’ll win a prize.  The truth is that when facing an illness there is a lot of waiting that goes on for both the patient and the caregiver.

I’m always amazed at how patient caregivers are when escorting patients to appointments.  I think doctors and medical office designers should enlist the input of caregivers since they spend so much time in waiting room…what’s with the ugly art and the uncomfortable chairs.  I’m not expecting it to be like the Taj Mahal, but the metal from the chair leaves many caregivers needing a chiropractic adjustment.

One of the most difficult aspects of caregiving is the wait.  You wait in doctor’s offices and hospital waiting rooms.  You wait a set number of hours before administering medication.  You wait, hope and may even pray that the person you’re caring for bounces back from their illness.  It’s a waiting game and that uncertainty can be unnerving.

I would encourage you to use the waiting time wisely.  First find some way to reduce your level of anxiety while in waiting mode.  Maybe you meditate while waiting, some may have knitting or journaling.  It’s not about distraction, although that may be an outcome, but sitting and releasing the anxiety that comes with waiting.

While waiting take the time to acknowledge the impact the illness is having on your life.  I can assure you that you aren’t free and clear from the impact.  There is something we call “vicarious trauma” and that’s where the impact of the witnessing the illness process imprints on our own hearts and souls.  Understand that you are in essence a co-patient.  The only difference is the actual patient is having treatments to alleviate their trauma and you, the caregiver, sit in waiting for the person to get well.

I hope that you’ll find ways to release the energy that is impacting your own experience of the illness.  If you haven’t had a physical exam in a while this a great thing to do, right now!  Knowing where your own health stands allows you to have someone looking out for your own well-being.  It sets a baseline so that as your caregiving responsibilities move forward your health isn’t compromised.

Caregiving is strenuous physically, emotionally and spiritually.  Don’t wait for things to happen, make things happen.  If you need resources research them so you don’t feel alone.  Work toward self-empowerment so you don’t put your life on hold yet waiting once again.  Find out from other caregivers how they survived this journey, this is no time to re-invent the wheel, a trail is already blazed.

How do you take your life off hold?  Share with others how you handle the waiting, let’s be in this together!

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

Hospital Transparency

Recently I spoke about my brother’s surgery.  The hospital he was in was very nice, a private hospital.  My sister-in-law had done all the legwork; checking out the doctor with the state board, researching the hospital, etc.  It’s interesting because I wasn’t worried about the hospital’s mortality rate, I was interested in the hospital’s infection rate.

Lo and behold, yesterday on NPR’s “Talk of the Nation” the topic was comparing hospitals so you can make better choices.  The most important thing to consider is that during an emergency it’s about getting the fastest care, not researching to find which hospital ranks higher, the truth is if you do the research you’ll probably be dead before you get the care.

Dr. Donald Berwick, CEO, Institute for Healthcare Improvement and Dr. Robert M. Wachter, Chief of Medicine at UCSF Hospital discussed the tools available to the public when choosing hopsitals.  They shared that Medicare has tracked mortality rates as related to heart failure, heart attacks and pneumonia.  The information gathered looked at mortality rates for 30 days from the intial hospital stay.

The goals is for hospitals to become more tranparent.  Knowing the ranking is not only a tool when you need to be hospitalized.  It’s a tool that will help hospitals improve their levels of care, decrease mortality rates and in time we’ll learn more about their infection rates.

We have to remember that we’re healthcare consumers, not guinea pigs.  We have certain rights as patients and one of the rights is to choose a hospital where our chances of survival are increased.  Remember, not all doctors have privleges at all hospitals.  You may have to choose between a doctor and a hospital, or before making the appointment, if you know the hospital you want to use, ask the doctor if they have privleges.  This makes it easy on you from the start and you won’t have to come to the fork in the road and make those difficult decisions.

If you want to see where you hospital ranks go to http://www.hospitalcompare.hhs.gov.  Part of the process of evaluation is to figure out how to improve healthcare.  It asks the hospital to look at their level of reliability- do they do the right thing everytime?; teamwork amongst the hospital staff; and listening to the patient’s voice.  Let’s face it, the hospital would go bankrupt if it didn’t have patients.  In essence, we are the hospital’s employer; they should listen to us.

Hospital stays are stressful enough without having to worry about making it out alive.  Knowing which hospitals have better track records empowers you to make good choices about your health.  It provides you with reinforcement about being a partner in your own healthcare…isn’t that what you want?

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

The Power of Example

When battling any type of illness hope is a major factor in maintaining focus.  It’s amazing the power that our minds have over our bodies.  Our belief systems influence the fire within and it’s that fire that propels us to take on tasks and overcome obstacles we never thought possible.  Imagine if we truly harnessed the power of our minds?  I think we’d offer the medical community a huge boost in survival and remission rates.

So who are your examples as you strive for wellness?  I was watching the Democratic National Convention (DNC) and Senator Ted Kennedy gave a formidable speech.  His words were important, but there were other aspects of his appearance that were momentous.  The fact that he’s in treatment for brain cancer is amazing.  The fact that he left the hospital last night in order to make the appearance at the DNC is amazing.  The fact that he stated that he would be on the Senate floor in January is amazing.  Do you see where I’m going?

Senator Kennedy didn’t put qualifying statements in his speech.  He didn’t say, “If I’m well…” or any self message that would impede his journey to wellness.  He made declarative statements and those sentiments vibrate throughout each cell in his body.  He informs his body that he has a mission to complete.  He’s not playing victim to his body or to the cancer.  Just as he has throughout his life; he’s facing the illness the way he has every other challenge, with fortitude and determination.

Are there any guarantees?  Of course not, but don’t you believe that his attitude and determination give the cancer a run for its money?  You may not have all the eyes of the country on you, but you do have a circle of influence who is cheering you on, supporting your efforts to get well and will take your lead on how to respond to you as you face your health challenge.  In that moment, you become the power of example…that’s something that is to be applauded and becomes a living legacy.

Posted in after the diagnosis, care for the caregiver, coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness, Living with Illness, Spirituality and Health

Pain and Suffering

We often hear the words pain and suffering in the same context.  When it comes to lawsuits we ask for damages to compensate for pain and suffering.  Are they really the same?  How to the two impact our lives when facing a health challenge?  I once heard a saying, “Pain is unavoidable, but suffering is optional”.  At the time I believe that was focused more on emotional pain than physical pain.  It does offer another vantage point on the pain and suffering dialogue.

My most recent educational venture was to discuss healing trauma through nature.  Will Taegel (www.earthtribe.com), the course intructor,  gave us a definition of suffering:  Suffering = Pain + Interpretation.  I heard this an began to wonder about the equation and its impact on those facing a chronic or life thretening illness.  Was he saying that when we experience physical pain, it’s the interpretation that determines if we suffer?

As you can tell I do believe there is a split between physical and emotional or spiritual pain.  This leads me to another idea.  Is physical pain intensified when our emotional pain or spiritual pain is high?  You know I believe strongly in the mind-body connection.  The conclusion would be that emotional and/or spiritual pain would intensify the physical pain and would be the precursor to the negative interpreation and therefore we suffer.

I hear story after story of those with illness experiencing sadness, even bouts of clinical depression.  Does suffering come when we don’t do anything to alleviate the pain?  I watched a Japanese documentary on depression.  The Japanese are new to acknowledging depression as a condition that needs treatment.  The documentary focused on individuals as they begin taking anti-depressants.  The reality is that being diagnosed with an illness can be a contributing factor to suffering.  It becomes the lens through which we interpret everything, makes sense since the illness usually impacts all areas of our lives.  Do we gain anything by suffering?

On Friday I wrote about caregivers and the importance of avoiding martyrdom.  Martyrs are in a constant state of suffering, by their own choice.  My hope is that when facing any illness you choose not to suffer. Of course there will be things out of your control, but it’s up to you to set the ball in motion to alleviate the pain and eliminate suffering.  If you’re in physical pain, don’t hold out till the next doctor appointment; get on the phone today and get something to alleviate the pain.  In our age of pharmaceuticals, pain control has improved greatly…don’t suffer.  If you’re in emotional pain, get thee to a support group, therapist or coach to walk you through the pain…don’t suffer.  If you’re in spiritual pain, find a clergy person, guru, spiritual director, engage in a spiritual practice…don’t suffer.

It’s unfortunate that pain is often accompanied by chronic and life-threatening illness.  Avoid the interpretation that pain is punishment.  Don’t buy into the no pain/no gain philosophy used in physical training arenas.  When facing illness the idea that pain builds character is crap…pain hurts!  My hope is that you choose not to suffer.  How have you avoided suffering as you face your illness?  Share your ideas so we can begin an important dialgoue about pain and suffering.

Posted in after the diagnosis, Caregiving, coping with chronic illness, coping with life threatening illness, Emotional Health, Living with Illness, Relationships

Don’t Wait Another Second

Welcome to Caregiver Friday!

As some of you may know there was no post last Friday because I was out of town with no access to a computer.  But today we’re going to talk about the importance of having a life while you are providing care for someone who is injured or ill.

There are many characteristics of the caregiver role and one of them should never be martyr.  If you’re going to be a martyr make it for some extraordinary cause, but don’t use caregiving as that vehicle.  I can tell you from personal experience having worked with hundreds of caregivers, martyrs are turn-offs.  When you take that victim role you isolate yourself by driving away those who could support you in your efforts.  So what are you to do?

First and foremost don’t abandon your own life!!!!!  Yes, you are going to have to make modifications to your schedule, but surgically removing every morself of what was your life leaves you depleted and you need to keep your fuel tank full.  In order to make that happen consider some of the following ideas: Check and see if your insurance coverage provides for respite care (some actually do and hospice definitely provides respite); hire someone to come in if the person you’re caring for needs constant attention ( I understand that not everyone can afford this but social service organizations or senior centers, if the person is a senior, sometimes have funds to cover the cost); ask other caregivers that you meet at meetings and support groups and find out how they attain respite care.  Those ideas are to help you get out of the house.

If you’re in the house a fair amount of time find ways to nurture your soul.  The first rule, just like when you have a baby in the house, when the patient sleeps you should get some sleep, or at least rest.  Set up a phone circle with friends and family to reduce your sense of isolation.  If you have a faith practice, engage members of your faith community to provide support, company, even a meal or two.

Keep your interests alive and well.  Carve out time during the day to do something you love.  Read a book, scrapbook, knit, paint, play the piano (music has great healing properties).  Setting boundaries around your own sacred time is important.

The only way to be an effective caregiver without feeling isolated, angry and resentful is to maintain aspects of your life prior to caregiving.  Be creative in how you achieve these goals.  I’d love to hear how some of you have carved out a life under these new conditions.  Don’t be afraid to ask for help.  If you choose to receive the information at http://www.survivingstrong.com, you’ll receive e-mails that will get you thinking about how to improve your life in the caregiver role and even an opportunity for free support.

Time is precious and a perishable commodity.  Don’t waste time wallowing in pity…it doesn’t help you or the patient.  Caregiving is not a prison sentence; it’s an act of love, compassion and selflessness-all hard things to be acknowledged for in our culture.  Let me be the first to say THANK YOU!!

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

Are We Our Own Worst Enemy?

I attended a motivational talk on achieving great things in life.  The presenter cited a study done by Johns Hopkins University that reported that following heart surgery, 90% of patients returned to their unhealthy life habits.  Could this really be the case?  I would expect some would revert to their old ways, but an overwhelming majority?  This not only frightens me but confuses me.

It’s bad enough receiving an illness diagnosis and going through treatment.  Having the tools to prevent further problems you would think would be a gift and not a burden.  Are we so entrenched in our negative behaviors that we can’t change even if it’s going to save our lives?  Could it be that once we dodge a bullet we resurface with a new sense of invincibility?

What is our responsibility to reclaiming our health?  If we’re not going to change behaviors to promote health why go through the treatment in the first place?  We’re an addictive society so maybe we’re talking about facing our addictions to food, stress and overwhelm.

This is what I’m thinking.  I believe we’re given instructions on how to change our lives but we’re so overwhelmed by the diagnosis and the treatment that reverting back to old habits is comforting.  As they say, “the devil we know is better than the devil we don’t know”.  Most of us aren’t prepared for what in the beginning seems like a huge learning curve and that stress makes us abandon the plan.  We want to believe we can do it alone but at the first moment of uncertainty we abandon the plan.  So what’s the solution?

You need to find someone or a group of someones who will support you in your lifestyle changes.  We’re more likely when starting something new to be more accountable to others than to ourselves.  It’s important that whatever changes you want to initiate, that you make public to friends and family.  We are more inclined to keep our promises when they are public then when held privately in our heads.  Since healthcare professionals are so overwhelmed with managed care and increased patient loads, until there is a problem the doctor will most likely not be the support person.  Go see a therapist, hire a coach, go to support groups.  If you want to improve your physical health hire a personal trainer, begin taking yoga classes and study with one teacher for continuity and familiarity.  If you want to change your eating habits visit a Registered Dietitian (RD), take a cooking class that emphasizes healthy cooking.  When change includes fun we are more likely to stick with the plan.

No matter what choice you make you should be your best friend and ally, not your worst enemy.  Don’t be a statistic.  If you’ve been given years to life, now is the time to add life to years.  How do you maintain your lifestyle changes that help to promote health on your journey to wellness?