Category: care for the caregiver

Posted in after the diagnosis, care for the caregiver, Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness

Bicycle Built for Two:Celebrating Caregivers

Posted on by Rev. Greg Katz, MS, PhD

It has been a while since I wrote a post focused on caregivers but I had to address the amazing souls walking this earth; the caregiver. Caregivers have been called co-patients because when an individual is diagnosed with an illness they too face many of the same issues as the person with the disease. Those in relationships with the patient experience the same life interruption and on some level there is a death that occurs for them on the emotional and spiritual levels.

Thanks for Facebook I saw this commercial about a couple that warmed my heart, renewed my faith in love and relationships, and showed how caregivers are plugged in on the physical, emotional, and spiritual aspects of the person they’re caring for. The commercial shows the relationship between a husband and wife and the wife has Alzheimer’s disease. The love and compassion this man shows is amazing and serves as the gold standard for love and compassion. It also punctuates the level of devotion he has toward making the end of his wife’s life as enjoyable as possible by plugging in to the things that gave her joy during earlier parts of her life.

Aside from the stress and strain of being a caregiver, I learned from this commercial the importance of paying attention each and every day that I’m with the one I love. We never know when we will have to rely on that information to make the life of the one we love more comfortable and peaceful. The knowledge caregivers acquire over time are not only an archive of their relationship but an exhibition of love, understanding, and matching one’s words and thoughts to one’s actions.

Please watch this video and think about someone in your life (doesn’t have to be a spouse) and a special moment, activity, food, or some other defining experience that may bring him or her joy in his or her time of need. You’d be surprised how the little things have a huge impact!

Are you a caregiver and looking for resources?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to express your love and devotion as a caregiver through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in care for the caregiver, Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness, Spirituality and Health

What Buddhist Monks and Children Have in Common!

Posted on by Rev. Greg Katz, MS, PhD

I think we underestimate the wisdom young children. They are, for the most part, unencumbered with the stress of daily life and they experience each day as a wonder. Having the capacity to live in the moment dissolves over time as we inherit the norms of society. Unfortunately, that inheritance is a detriment to our well- being and can have grave consequences. So why are we so attached to things and the perfect outcome?

Recently I had the joy of spending a week with my family at a beach resort in the Caribbean. It shouldn’t’ be a surprise that at the edge of the water kids, including my nephew, were building sand castles and forts all along the shore. They worked vigorously and experienced great joy. When they finished their architectural wonders they simply walked away, not even taking pictures of their engineering accomplishments. In addition, later that day my mother told me that my nephew asked her to report back on whether or not the building was still standing. How can kids simply walk away from something they worked on for hours, and during the process become invested in the outcome (or do they)?

I’m also blessed to have witnessed the creation of those amazing sand paintings created by Buddhist monks. I’ve watched on and off for days as these focused spiritual beings create highly detailed paintings made of colored sand. Their devotion to the process is unmatched. This is part of their spiritual practice. The amazing thing, and needs to be seen, is that at the end of the process they take a fan and blow the entire painting away. The board where the painting rested is wiped clean. Hours and days of work and all they have is a blank slate, could you do that?

In both cases we bear witness to the practice of impermanence and nonattachment. It’s not something we’re familiar with in our culture, and unfortunately is at the root of much pain, physically, emotionally, and spiritually. What we’re most attached to is our assumption of good health. When diagnosed with a chronic or life-threatening illness our assumptions are shattered, our sand castles and paintings are blown away, but they cause enormous distress.

Are we able to become attached to other things such as perseverance for peace in our soul? Are we capable of becoming attached to attaining our higher purpose? Is it possible to become attached to nonattachment? I know I’m getting a bit out there, but we grab on for dear life for so many things we have no control over because the locus of control is external. What if we focused more on the things we do have control over like being kind to others and ourselves.

What are you willing to allow the water to wash away, or a fan blow away (literally and figuratively)?

Facing a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Hoping to find out how art can improve your healing process?  Visit http://www.timetolivecreatively.com

Posted in care for the caregiver, Caregiving, Emotional Health, Relationships, Self-Nurture

The Caregiver Experience…How You Can Channel the Amazing Kreskin?

Posted on by Rev. Greg Katz, MS, PhD

Do you remember the Amazing Kreskin? He was best known for, what we believed was, reading minds. So many of us would see him on television and wonder how he was able to achieve these monumental perceptions and knowledge of what the subject was thinking.

If we were able to read minds life would be so much easier. The capacity to anticipate the needs of others would be a saving grace. Understanding what others need doesn’t have to be a circus sideshow; it needs to be rooted in communication and honesty.

When facing a chronic or life-threatening illness, especially when going through treatment, there are needs and desires that ease the discomfort of this part of the journey. The person who is taking medications may result in mood or behavior changes. These changes can cause tension and make you, the caregiver, feel like you’re living with Dr. Jekyll and Mr. Hyde. This is disconcerting and causes you, the caregiver, to question your role in the life of the patient. It also makes you question the sacrifices you’ve made because you’re feeling under appreciated.

Caregiving is a role in life that is often like being the producer and director of a theater production. You may be the coherent one during doctor’s appointments keeping track of the medications, lab orders, and doctor’s appointments. You become the Director of Transportation as you get the patient back and forth from all their appointments.

In all my years of clinical work the one aspect of the family dynamic that creates the most friction is when the person undergoing treatment is not anticipating what the patient needs. You are responsible for being the advance person, and you thought the President of the United States was the only person with an advance team.

Because there is so much “we” time when caregiving, you may feel as if you’re losing your sense of individuality. Everything is filtered through the lens of the illness. It’s crucial that you take some time to keep yourself an individual. The person undergoing treatment may use the guilt card wanting to keep you close, and even when you make plans for a surrogate caregiver, that guilt often hangs heavy over your head. Don’t give in to the cloud of guilt! The person undergoing treatment has survived difficult treatments and side effects from medications; they’ll survive you taking an hour or two for a yoga class, a meeting of your book club, or some creative time in your art studio.

It would be wonderful if we all had the mind reading gifts of the Amazing Kreskin, and in many respects you do. You’re not the caregiver because you’re a stranger; you’re near and dear to the person facing the diagnosis. Whether you believe it or not you do have mindreading capabilities. You know what the favorite foods, television programs, and genre of books is of the patient.

It’s amazing that you can anticipate what the patient needs, and yet many caregivers haven’t a clue about what they need to continue on the caregiving journey. This is one of those times when a caregiver needs a caregiver. I urge you to enlist a friend or family member to keep you grounded and to serve as your touch with reality. This person will be your mirror so you can be alerted when you need rest, a break from the illness arena, or just a reminder of who you are as a person in the world, aside from illness.

You are the Amazing Kreskin, or maybe we can say you’re simply Amazing!

For more information on health and healing visit, http://www.survivingstrong.com

Interested in art and healing read the blog: http://www.timetolivecreatively.com

 

Posted in care for the caregiver, Caregiving, coping with chronic illness, Having a Voice

Find a “Happy” Social Network

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!

It’s all over the news…laugh and the world laughs with you.  (that’s definitely better than the world laughing at you)  The study conducted by researchers at Harvard and University of California San Diego found that happiness is contagious.  I know what you’re thinking, how can you be happy when you’re caring for someone who is ill.  I’m not saying you have to be jubilant or throw a ticker tape parade, but a bit of happiness like a pinch of salt in cooking may be good for you on multiple levels.  As it seems to show, it can also be good for your neighbors and community.

What we’re really looking at is the power of social networks.  Technology has certainly changed many of our definitions of community, but let’s look at it from multiple levels.  On the more personal level, when your neighbors see you as you pick up the morning paper from the driveway, smile and say good morning and ask about you don’t you feel happy?  If you do that for someone else and they snub you don’t you make a comment about the sourpuss who lives in the neighborhood.  I know it sounds a lot like forecasting the weather, but in some ways it does seem to travel like the wind.

On the technology side, with networks such as Facebook, Twitter and blogs galore, can’t you hook in to someone else’s happiness?  Don’t you feel uplifted when somene wants to be your “friend” and then starts a dialogue.  I just found a friend of mine from high school (I grew up in NJ) and she’s living in CA.  The interesting thing is she moved 30 minutes from where I lived in CA and she moved there the year after I moved there.  The world is much smaller than you might think.

“Being happy also brings other benefits, including a protective effect on your immune system so you produce fewer stress hormones, said Andrew Steptoe, a psychology professor at University College London”.  Caregiving is stressful so anything you can do to lower the stress hormones protects you, the caregiver, from developing your own health complications.  Just because you’re caring for someone who is ill doesn’t mean you have to be serious all the time.  Yes, certainly be serious about helping the person who is ill, but don’t deny who you are as a social being.  Don’t deny yourself the opportunity to interact with the outside world.

Why do you think that support groups have been so successful?  It’s because you find others in the same situation, who understand you, and even make off colored jokes and remarks that only someone in your situation  would or could find funny.  (those on the outside may consider it bad taste, but it’s life saving)

We need to connect because we’re social creatures.  So you have a choice, network with happy people and reap the rewards of happiness or network with curmudgeons and keep that narrow, fatalistic approach to life…the choice is yours.

Posted in care for the caregiver, Caregiving, Community, coping with chronic illness, coping with life threatening illness, Relationships

As Humans What Are Our Limitations?

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!!

Every so often I meet a caregiver who makes me rethink the idea of the superhero.  I keep waiting for this person to transform themselves right before my eyes (that is if they aren’t accustomed to changing close in a phone booth) and automatically be imbued with powers beyond imagine.  If that were truly the case there would certainly be a lot less suffering in the world.  The truth is that when you engage in caregiving you don’t do it off the cuff, as a second choice, as something to pass the time.  You take on the caregiving role out of love, friendship, respect and the belief that your energy is part of the wellness or healing equation.

The truth about caregiving is that the hours can be long, if not physically at least mentally.  It can consume your life.  It can cause you to worry beyond the boundaries you thought possible.  It can leave you feeling powerless at the times when you need to feel in control.  It can be heartwarming and joyful as a means of sharing an intimate experience in another’s life.  It can expose qualities in you that you weren’t aware of or thought were dormant.  It allows you to exercise your faith in human nature, connection to a force greater than yourself and an admiration for science you may have never known.

So what happens when you think your hardest “isn’t enough”?  I hear caregivers say “if only I could have___________________(you fill in the blank).  The truth is your hardest will always be enough, in fact it will most likely be more than enough.  The human condition is strong and fragile at the same time.  We’re given opportunities and experiences that continuously change our lives.  How can you know that your hardest is more than enough?  When you can be in the sacred space of caregiving and be totally present in that experience.  I know it can be hard to sit with pain, despair, frustration and a host of other emotions, but that’s when you’re hardest is more than enough.

I’ve spoke about caregiving and identity, and true your self-concept will change throughout the caregiving process.  It’s also true that we are fundamentally consistent in how we process information and our emotions.  Don’t you see…your hardest has to be enough because that’s all you have.  It’s not like syphoning gas out of someone else’s car.  You are who you are and accepting that will bring relief and immeasurable confidence in your actions, decisions and beliefs.  Having limitations is not a bad thing, in fact for many caregivers accepting their limitations probably saved their own lives.

It’s through out limitations that we begin to rely on community.  We come to understand that constructing 20 foot high walls, trying to protect yourself and the patient from the outside world is counter-productive.  When we accept our limitations we begin to look for those who have complimentary skills and gifts.  We begin to see that caregivers as a community are greater than the sum of its constituents.

Your hardest will always exceed expectations.  Don’t try and become something your not; that leads to disappointment and despair.  Understand that the gifts you have to offer of support, compassion and love, will serve the person you’re caring for as one more arm of their journey to wellness.  You’re an integral part of their lives, while at the same time understanding that you too have a life that is parallel to the caregiving process.

I can tell you that your hardest may not always be popular and that’s when you most need to sit with those feelings.  Limitations keep us in the human world.   We’re not born to be superheroes, we’re born to be part of a community and relationships that enhance our lives.  When health challenges enter the picture although not ideal, have to be confronted.  I know it can be all-consuming; that’s why understanding that humans have limitations proves in and of itself that your hardest is all we have and is more than enough!

Posted in after the diagnosis, care for the caregiver, Caregiving, living with chronic illness, Living with Illness

How Do You Walk in the World?

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Fiday!!!

So I’ve been giving some thought to how you walk in the world as a caregiver.  There are so many opportunities to display different modes of operating and I will talk about some “archetypes” over the next couple of weeks to focus the discussion, but today I have two visuals.  Do you walk this world as a duck or a sponge?

Let’s get real for a moment.  After you read this entry, take a couple of minutes to really reflect, even meditate on this question.  First the duck.  As they say, “water rolls off a ducks back”.  In people terms that means that you don’t let anything get to you.  You may present as stoic to the world, unphased and unnerved.  Others may view you as a bit cold or uncaring, even though that’s the furthest thing from the truth.

Then we have the sponge…pick any color you want to be.  The sponge absorbs every nuance of emotion.  They are the ultimate receivers of the world and are often overwhelmed by their lot in life as a caregiver.  They are so empathic that it takes over their emotional world.

Which is better?  That’s really not for me to say, but for you to understand which works better for you given your own emotional composition and your personal circumstances.  I think in a perfect world, the ideal would probably be a combination of the two.  Having the capacity to let the inane slide past you and absorbing the important aspects of providing compassionate care to another. 

Trust me, balance is not easy to achieve.  It takes a lot of practice, maybe even takes a practice (more to be revealed).  The secret to any relationship is not to be the iron maiden and allow nothing in, nor melt into a pool of emotional mayhem leaving everyone without a safety net.

How do you balance your roles as a caregiver?  Do you feel balanced or do you fall more toward one end of the continuum?

Posted in after the diagnosis, care for the caregiver, Caregiving, coping with life threatening illness, living with chronic illness, Living with Illness

Duet

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!!

I’m going to take things from a different angle today because as you’ve found out nothing about illness stands alone.  Today is my 10th anniversary and to celebrate I want to share with you how illness and caregiving within love relationships can get derailed and how to make sure everyone stays on track.  First remember that you, the caregiver, are a co-patient.  Everything that the patient experiences gets translated into some force that impacts your life as well.  In yesterday’s entry I wrote about endurance and as a caregiver, you too need to build your level of endurance.

The three things most couples struggle over are: Communication, Sex and Finances.  It’s a universal so don’t feel bad if you’re struggling with any of these, you’ve got plenty of company.  The question is not do you struggle with these issues, but how will you resolve these issue.  I’m going to talk about three areas that couples facing a health challenge need to consider to keep moving forward with their relationship.

Communication is obviously the biggest factor that comes in to play between couples that aren’t facing a health challenge so can you imagine how that gets amplified when you throw an illness in the mix.  The stress level is not increased arithmetically, it’s increased exponentially.  Fear is at the heart of the communication breakdown.  The patient is afraid if they voice their concerns the caregiver will leave.  The caregiver fears that being honest will kill the patient (both literally and figuratively).  So let’s be honest, things will be said that aren’t pretty or nice.  The question is are they true.  I was writing a paper for school and I found this quote in a book about healing trauma, “Intimacy comes with honesty, not from ‘making nice’.  I’m not suggesting that you kick someone when they’re down, but clearing the air is what keeps relationships alive and well.

Communication breaks down when one or both members of the couple bury their fears, even though both of you are well aware that they exist.  For instance from the patient’s side they may be wondering : Will I be a burden to my partner?  Will I be able to provide for my family?  The caregiver may be thinking: “I don’t know if I’m strong enough for this?  or “This isn’t what I signed up for!  Both are wondering how will you ever get out from under all the medical bills.  Pretending these thoughts don’t exist is ridiculous…the question is how do you deal with them.

You can obtain the services of someone who will provide a safe environment to explore these avenues together, whether it be a psychotherapist, coach, or spiritual director doens’t matter.  It should be someone you trust, and who understands these particular issues.  You may choose not to do the exchange verbally, but do it in the form of journaling.  Rose Offner has a book Journal to Intimacy.  The book is divided into sections relating to the relationship and it allows each person to write their thoughts in the journal.  Each person then reads the response and can write a response of their own.  This will only work if you both commit to being a part of that journey.

Intimacy is also a big issue in relationships.  Let’s say it out loud…S-E-X.  Yes that’s right, couples have sex but during times of illness that may not be a part of the picture.  Don’t confuse love with sex and don’t confuse intimacy with sex.  Intimacy is about the bond between two people.  It’s about being able to share hopes and dreams and fears.  It’s about being to feel free to share difficult things with your partner and know that how you are viewed by them won’t change.  I know it’s scary, but it can be done and it is important to maintaining the relationship.  Intimacy is about connection so find ways to connect.  Instead of sex, maybe it’s about rubbing your partner’s feet (not me I don’t let anyone touch my feet).  Maybe it’s about making the other person breakfast in bed.  Remember that means the person with the illness can make the caregiver breakfast in bed ( we know the person with the illness unless they are in the last stages of illness will have good days and they can offer these loving gestures to their partner).

Let’s see we’ve talked about communication and sex…anyone up for politics or religion? (just kidding)  You will each gain strength from the other.  Caregiving should not be about obligation, but love and compassion.  Love and compassion should also be returned from the person you’re supporting…don’t let things get so out of balance that you feel you have nothing left to give.  So I guess “Balance” is the third side of the triangle.  If things get to out of balance bringing it back into balance can be more painful then some treatments.  Become intimate with your emotions.  Know when you’re feeling out of balance and share that with your partner.

Communication, Intimacy and Balance are three key aspects of maintaining a healthy and loving relationship through a health challenge.  From personal experience I can tell you that opening up about your fears is not easy, but it makes the relationship stronger.  It helps you build a foundation of trust and mutual respect.  Look out for each other’s health and know that I’ll say a prayer for you and your relationship in honor of my anniversary.  Thanks for sharing this special day with me.

Posted in after the diagnosis, care for the caregiver, Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Take A Loving Look at Yourself!

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!!

It’s always interesting to balance the ideas about living with or overcoming the obstacles of a chronic or life-threatening illness with those of the caregivers in their lives.  Just like with those facing a health challenge I don’t believe that caregiving should be solely about getting by, or simply surviving the experience.  I am also not going to get all hyper-optimistic and say the proverbial “everything happens for a reason” ( a bit over played).  I do want to focus on the personal experience of caregiving because I believe reframing the experience can reduce a lot of anxiety for those of you providing care and support.

The first reframe comes in what you call yourself.  During an earlier post I referred to caregivers as being co-traumatized.  So if we look at the reality that the person with the health challenge is not the only person impacted by the illness then you go from simply providing care to being a “wellness partner”.  You have just as much of a stake in the loved one recovering as the person going through treatment.  I also think caregiving sounds too much like a job when in fact most provide this support with love and compassion.  (I’m not saying it’s not work, just as I would never say that a stay at home mom doesn’t work, but there is a vested interest in the outcome, and that’s the return on your personal invest).

If the world has dealt you this lot in life then what are you going to do with the experience.  I’m not talking about making lemonade out of lemons; I’m talking about being mindful of the experience and what does the “wellness partner” experience bring out in you that may have been hidden or not fully realized.  It may be your inner strength, your level of perseverance, your commitment and love of the person you’re supporting and the list can go on hopefully forever.  It’s crucial to validate the qualities within that are being fully expressed as a “wellness partner”.

I just finished listening to Sylvia Boorstein’s book (on CD) “Happiness is an Inside Job”.  Sylvia is a meditation teacher and was sharing what she says to herself during times of confusion or despair.  Here’s what she says to herself, “Sweetheart (referring to herself), you are in pain.  Relax, take a breath, let’s pay attention to what’s happening, then we’ll figure out what to do”.   She shared that saying this to herself accomplishes three things:

  1. Relax- Interupts the current story you’re telling yourself.
  2. Take A Breath- Put all your attention into your breath refocusing in the moment
  3. Pay Attention to What’s Happening- pay attention to feelings of distress.  Understand that knowing the source of pain is helpful for creating a response.

We are all going to have challenges in life, that’s a given.  How you handle them is up to you.  In order to come up with solutions it’s important that you take a loving inventory of your qualities, your gifts and talents.  Your support may be as simple as telling your loved one that you’re on their side every day.  Maybe it’s about random acts of kindness like cooking the person’s favorite meal.  Maybe you are committed to intimacy and begin reading together on a nightly basis.  I’m sure you’re more adept at coming up with ways to express your support.

Being a caregiver or “wellness partner” is never about are you doing it right or wrong.  It’s about asking yourself if you’re doing it from your heart?  Are you keeping yourself grounded in your experience?  By knowing how you’re doing you can come up with gentle and loving measures to offer support without having to sacrifice your personhood.   Partnership is key and I commend each of you for being a willing partner in this journey.

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

Posted on by Rev. Greg Katz, MS, PhD

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 care for the caregiver, Caregiving, coping with chronic illness, coping with life threatening illness, Living with Illness, Relationships

Caregivers Sacrifice, But Shouldn’t Be Sacrificed

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!

This week I’ve been talking to friends, family and colleagues about their caregiving experiences. Over the past twenty two years I’ve seen amazing caregivers who go through each day offering compassion and easing the suffering of those they care for on a daily basis. Some caregiving is temporary but more and more long-term caregiving is the norm.

Caregivers, as you know from first hand experience, are part of a team of providers that includes the rest of the health team. The major difference is that family/friend caregivers go home with the patient and the other member of the team get to keep a safe distance. Being up close and personal with the patient requires patience and compassion. It requires the ability to think rationally, especially in times of chaos or crisis.

What I notice is that caregivers often re-arrange their lives to be able to keep running on all cylinders. They give up time with their own friends, deal with decreased financial resources and are asked/required to put their own needs on hold. These are huge sacrifices and are often costly both in physical and emotional health.

There has to be a way to create balance for the caregiver. There are organizations like In Home Support Services (IHSS), but often they have income requirements. There are agencies that provide respite care but it’s not always covered by insurance, until someone is in hospice. You can hire someone out-of-pocket depending on your financial resources or you can get volunteers to help through community nonprofit agencies.

Healthcare providers have to get better at addressing the needs of the patient and the caregiver. We can’t make caregivers sacrifice to the extent that they are left physically, emotionally and spiritually malnourished (literally and figuratively). In order for caregivers to continue providing the needed love, support, and compassion, there has to be some way to allow them to maintain some degree of normality. If we expect caregivers to be sacrificed because illness has created a new normal, we’ll end up with two patients and no caregivers…is that really what we want?

If you have tips to share about how to maintain emotional and spiritual stamina while caregiving please share your story so we can keep caregivers healthy and at peace!