Transforming Caregiving

CAREGIVING IN THE BALANCE

2012-01-21T13:29:00.005-05:00

...an excerpt from The Caregiver's Reader

One dictionary definition of balance, perhaps the most usual, is “mental steadiness or emotional stability; a habit of calm behavior, judgment, etc.” However, in my life, I find it to be more complex and interesting than that.

Though balance can imply steadiness with some predictability, it is Not mere stability. Balance implies a degree of control while in motion. In fact, a smidgen of imbalance is necessary if one wants to stay in motion.

But when one is about to lose control, life feels like a “balancing act.” And when off-balance, one can be about to fall on one’s face. But wait! Is that true? Things are not always as they seem, especially in caregiving.

During caregiving the times when I was off-balance were, though unnerving, the more instructive times. What did I learn from allowing myself to be off-balance? That I do NOT lose control—I learn to walk differently. I learn that I have far greater resources than I believe (or than I tell myself). This all sounds so appealing that it’s a wonder that I still fear losing control. So maybe the goal is not to be in balance, but rather to be enough in balance to keep from falling on my face.

Look up "balance" in the dictionary, and you'll find that there are a few definitions. One definition is “in the balance, with the outcome in suspense”—maybe not comfortable, but useful. Perhaps in caregiving we could look less for stability as a survival strategy, but instead look for that balance that makes for the good and vital living of this life.

In Maslow’s hierarchy of needs, stability is near the bottom, under Safety Needs, while balance is listed under Aesthetic Needs, just two levels below Transcendence. So might balance be a state of beauty even more than a state of survival?

In dance, balance means “to move in rhythm to and from: to balance one’s partner.” So here we are again, thinking of balance in motion... perhaps as a way of dancing with Life?

The dictionary tells us that balance can mean, “to have equal amounts of the necessary elements such that no one predominates.” Which brings us to the matter of having a balanced life, as distinct from emotional balance, though they can be connected. (See page 93 in "The Caregiver's Reader" for a neat little exercise for rebalancing your life commitments.)

During caregiving, when I was able to achieve that delicate balance of the right elements in the right proportion to each other in my life I would find moments of great peace... and then... life, being by nature in motion, would run past me and pull my carefully constructed life out of whack again, so I’d scurry to pick up the pieces. Much as I tried to keep my ducks lined up, they kept swimming away! Maybe the real problem was that I kept thinking those ducks should line up and stay that way.

The next time you’re feeling a little thrown by change, remember that it may not be a problem— it’s just life. What would it take to experience balance in motion? Then you would be practicing the Art of Caregiving.

Shifting Your Holiday Expectations (as published in "The Caregiver's Reader")

2011-12-14T09:21:00.004-05:00

Shift Your Expectations of The Holidays
The holidays when caregiving are different, yet we bend over backwards to make them the same as they always were. At no other time are we so dedicated to pretending that nothing has changed. Preserve the simpler family traditions, but consider tossing out your more extreme expectations of the holidays, family members, and yourself. Stay in the present moment. Generate new, creative, simpler family traditions. Focus on gratitude for what you now have.

Shift Your Expectations of Others
People are different too. The demands of the holidays compound the regular stresses of caregiving to push family members to their emotional limit. If they need to act out, if possible, let them be. As hard as it may be to imagine, they may be doing the best that they can. Have compassion while asserting your own boundaries. You can’t make other people happy, or make them act the way you would want. You can only tend to your own state of mind and heart. Do what you can. Let that be enough.

Shift Your Expectations of Yourself
As your own stresses mount, lower the bar on your expectations of yourself. Make a little more time to decompress. Focus on your relationships more than the trappings of the holidays. Ask for a little more help from others. The happiness and holiday spirit of everyone else are not your sole responsibility. Balancing the holiday house of cards on your shoulders is a vulnerable position for everyone. Tell them that, and then ask for their partnership to help everyone get through the holidays a little happier, a little more peaceful, a little more grateful for all that you do have.

Questions for Caregivers

2011-11-07T13:50:00.011-05:00

The following is an excerpt from my provocative interview with Byron Woodman of the wonderful website, QuestionsForLiving.com.

So... if the quality of life depended on the quality of the questions we ask, what might that mean for caregiving?

The voyage of discovery lies not in finding new landscapes but in having new eyes.

—Marcel Proust

Whiteside: I began to see “life through new eyes” at age 33 when I took the Landmark Forum. That transformational training and subsequent workshops taught me, among other things, the power of a question, taking me into a vital new career, through ten years of challenging yet successful caregiving, into my current work as a caregiver’s coach and Elder advocate, and now into yet another reinvention of my life purpose. Chapter Three of my book, “The Caregiver’s Compass” begins by applying the power of questioning to surviving and thriving on the journey of family caregiving.

QFL: - What questions did you ask yourself as a caregiver? -

Whiteside: The questions that drove my caregiving decade of survival and personal growth evolved from,

To what am I committed? and How can I give without giving myself away?

What is the source of my energy and peace? and then

What would be available to me if I opened my heart to my mother?

Those four little questions, as you can see, cover a lot of terrain. They were answered by applying to myself the life coaching principles that I had been learning and teaching others over the previous decade. And, yes, by the end of my decade with Mom we had forged a loving relationship.

QFL: - What questions do you ask caregivers that mindful caregivers can ask themselves -

Whiteside:
In this one-and-only moment, what are my choices, inner and outer?

Since all we have is the present moment, the choices we make Now cause everything that follows. Everything hangs on that momentary question and its subsequent choice.

What “stories” do I tell myself about caregiving that make it harder?

Our inner stories give us our emotional experience of life, so we’d better make up good ones. Life-serving ones.

What are my strengths and survival habits?

A kneejerk positive attitude can blind you to the truth. The need to be right can have you miss important learning opportunities. Which survival habits are undermining your effectiveness? Which will help you to succeed?

What am I resisting that I might begin to allow?

Most energy sinks are cause by resisting someone or something. Therefore the more we can accept and allow, the less energy we waste.

When is my helping actually disempowering my Elder/loved one?

Are you trying to fix your loved ones life, or empower her/him? The two frequently work at cross purposes.

What are my expectations?

Expectations will often trip you up. Identify your expectations of caregiving, your family members, and yourself. Some expectations degrade the quality of caregiving. Whenever possible, consider lowering the bar.

QFL: - How do we go about being happier and continually learning? -

Whiteside:
Mind your own business.

Don't try to change others.

Focus more on who you are being, and less on what you are doing.

Focus more on what the inner world of others looks like, and less on trying to convince them that your way is right.

If you keep getting disappointed, lower your expectations.

Be authentic.

Release control in favor of movement and resilience.

Notice resistance in your body, identify what you’re resisting, then let it be.

Repeatedly throughout the day step back from what is happening and just notice it without judgment.

Look for multiple ways of interpreting whatever is happening.

If life is just a series of stories we tell ourselves, continually ask, "What story would now best serve me?"

QFL: - How do you frame your coaching questions to help your clients optimize their learning -

Whiteside: I begin by giving the client ...

QFL: - - What questions do you think people should ask themselves to make this world a happier and healthier place to live? -

Whiteside: Byron, I’ve come to the belief that the only way to make the world happier and healthier is...

(see the full text at http://www.questionsforliving.com/categories/health/questions-caregiving)

Holly's Bio on Questions for Living: http://www.questionsforliving.com/users/mindfulcaregiving

A Wake-up Call From Which We Heal

2011-08-10T09:09:00.004-04:00

We've been issued a wake-up call for mid-lifers (Boomers), caregivers, and humanity. In many of his writings, Dr. Bill Thomas wakes us from denial about aging, shakes up the way we think about elderhood, and reshapes it as a beautiful thing. I’ve just read his latest searching and rattling article, and would like to offer a few reflections on the parts that made me sit up straight. They left me with more questions than answers, and that is good—in the questions is exactly where we need to be. You can read Dr. Bill's article in full in the AARP Journal, (linked below) but here is where it took me. Dr Bill says,

“The postwar generation’s dim but growing awareness of aging is beginning to generate intensely private concerns that people are reluctant to discuss openly.”

So, we as a generation (and culture), have mounting intensely personal concerns about aging that we keep bottled within us? Yup, that rings true, but join me in thinking a little deeper. A challenge of this proportion to our collective sense of reality can only continue for just so long before something gives. How long before we’re all turning to meds to appear functional? Oh, right, that’s already happening. But what are the implications of this cultural blindness for the quality of Boomer caregiving? How can we do caregiving well when we not only don’t understand it, we resist the very fact of it? Fortunately, Dr. Bill points us to a more forgiving way of seeing.

“We can learn to read the story of our lives as it has been written around our eyes and mouth and across our foreheads and cheeks. We can begin to reinterpret the changes as signs of important signifiers or our unique journey through life.”

So, our ultimate "pill for inner peace" isn't to be found externally, in products and services, pills and liposuction. This is good news (and much less expensive)—there is a broader context within which we can begin to make sense of our lives as a whole. We can achieve a new way of holding our lives that brings us to a kinder and gentler place. Dr. Bill elaborates:

“The path to personal happiness and fulfillment I am offering to you has just two steps:

1. Stop pining for what is already gone.
2. Start searching for the person you are meant to become.”

Ah, now we’re getting somewhere. This quest for the person I am meant to become is a mission I can get my heart around, is big enough to call on all of my life’s learning. This is, really, my new purpose for this stage of life. I’m 58, post caregiving, post 9-5 corporate treadmill, and I’m smart enough to refuse to settle for anything small for the second half of my life. Nope, I won’t settle!—I will fulfill. How profoundly exciting! He’s speaking directly to me when he says,

“Elderhood contains a revolutionary and liberating developmental potential. Persistently and deliberately misinterpreted as mere decline, elderhood is actually the rich reward that goes to those who manage to outgrow the frenzied jangle of adulthood and enter voluntarily into a new and much more soulful way of being.”

Over the last five years since my mother died I have been experiencing this shift to a “more soulful way of being”. It feels so right. But what are the implications for society if we do heal what is broken in our relationship to life before it is too late? I’ll leave it to you to read that provocative part of Dr. Bill's article.

For now, I am brought back to what this means for caregivers. As we embrace our own aging, can we stop resisting the aging of our Elders, and how would that feel? As our individual hearts open to a life-serving way of being, might we, as a culture, be empowered to heal our relationships with our Elders? Can we embrace their aging and ours? Could we all heal simply by each of us asking, "Who am I meant to become?" What do you think?

Stuck in Caregiving, Part One - In a Stuck Relationship

2011-07-18T16:32:00.009-04:00

How do you get movement in stuck relationships, when you're stuck in spirit, when you're stuck in limiting beliefs, or when you're simply stuck in fear.
What are the things that make us caregivers feel weighted down, or out of oomph? Feeling greater freedom and ability to cope with caregiving requires staying in motion emotionally and spiritually, moving forward so that you can rise to the occasion of each day. If, as chiropractors tell us, life is movement and movement is life, isn’t that even more true during caregiving? With all of the complexities of caregiving, and all that you have at stake, the last thing you need is to feel stuck. So how do we get stuck, and how can we free ourselves?

Part One - ARE YOU STUCK IN A RELATIONSHIP?

I’m not talking about being in a relationship you’d rather be out of. I mean are you stuck in a committed relationship that isn’t growing, so you don’t feel alive in it? You might be in a stuck place with the person you’re caring for, or a friend, or loved one. Being stuck in any relationship is going to effect your caregiving experience. How does it feel to you to be stuck? Like a tight space with no air to breathe? Like your energy is being sucked right out of you? What makes that happen?

Whatever our opinion of others, their choices and their actions, we may be wasting precious energy resisting who they simply Are. Judging others, trying to fix others, resenting others for not being who we would like them to be is a sure way to kill the life of in ourselves, let along the relationship. I remember feeling a rush of freedom when I learned that my mother had been who she was before I was even born! Maybe it wasn’t up to me to change who she was! How would it feel to not be phased by an other’s personality traits, or the choices they make in their lives? Stop for a minute to imagine that. Imagine yourself free of that concern or focus. We may get from being worked up over others, but does it outweigh the release and freedom if we were to let it go? A funny thing happens when you go to the other extreme and look for ways to make someone else Right—they all of a sudden get so much better.

Or perhaps you’ve been allowing someone else to tell you how you should be, think, or act, until you feel so very small and constricted. Self-confidence ebbs. Your intuition, one of the caregiver’s strongest allies, becomes muffled. How would your life feel if you were free of such restrictive forces? What might you say, think, or do differently? Stop for a minute to imagine the sense of power and freedom, and then what you would do with it. Whatever belief or fear caused you to sacrifice your self-confidence, does that thought or fear outweigh the exhilaration that you would feel living life on your own terms? There’s no need to start a war. You can start in small ways to draw lines, to stand up for yourself.

Finally, in caregiving we can feel stuck because we feel a limited ability to be straightforward. After all, we're here to help someone else, right? Aren't we meant to keep them calm, to be secondary to their needs? It turns out that by being present, by expressing what we see as true or necessary, telling our personal truth, your relationship may suddenly become alive and begin to grow again. What was draining can now be energizing and uplifting, to both you and your loved one. For more on this, check out "The Caregiver's Compass", chapter six, where you apply MindfulCaregiving principles to your effectiveness.

You Are Not Alone

2011-06-18T12:01:00.002-04:00

Our sense that we are an island,

an independent self-sufficient individual,

bears no relation to reality.
~ Geshe Kelsang

Caregiving can be such as a emotional bootstrap operation —we try to pull ourselves up without much to hold onto. The way I handled it at first was to pretend that, really, everything was all right. I was all right. I focused elsewhere, on the to-do list, on work, on anything that would let me sidestep the emotional pitfalls so as to stay in motion. Staying in motion felt like progress. Doing tasks felt useful. So much of caregiving is change, we caregivers need to feel we are having a positive effect on Something.

When we do talk about our emotional experience, it is often as a drama, focusing on the ways we feel stuck. In fact we can get stuck in our drama, one of the most prevalent energy sinks in caregiving. (Better to talk about our experience in ways that give energy rather than sap it.) But many of us don’t speak of our inner experience much at all.

Having never been taught how to do this complex work, it is possible in caregiving to feel horrendously alone, alone in a sort of double life—there is our personal experience of caregiving, and then there is our "life as usual" that we hope will keep rolling along. But this experience of isolation is, I believe, a state of our own making. In the long run, separating our caregiving from the rest of our lives weakens us. By refocusing on the connections in our lives, we can heal a good deal of the strain.

As Geshe Kelsang says in one of the Kadampa Lojong books, Eight Steps to Happiness: “Without others we are nothing. Our sense that we are an island, an independent self-sufficient individual, bears no relation to reality. It is closer to the truth to picture our self as a cell in the vast body of life, distinct yet intimately bound up with all living beings.” The new movement toward person-centered care-partering is finding that Elders whose carepartners focus first on human connection are measurably healthier and happier (http://www.edenalt.org). If that is true, then the divisions we impose on our lives are false. Caregiving has an effect on our home lives, whether we want it or not. By not focusing on our connection with the others in our lives, we diminish ourselves and our relationships. Our caregiving becomes functional. Our family and friends lose an opportunity—if we don’t let others in, we prevent them from helping, leaving them only to experience the residual strain that we bring home with us. Better to let our connection with others support and sustain us. So focus first on connection with your loved one, your family, and yourself. Everyone will feel the better for it.

LIVING OUT OF POSSIBILITY

2011-05-04T16:20:00.006-04:00

Everything can be taken from a man but the last of the human freedoms -
to choose one's attitude
in any given set of circumstances, to choose one's own way.
~ Victor Frankl, holocost surviver, author of "Man’s Search for Meaning"

My beloved eldest sister has Parkinson’s Disease. I serve her as well as I can long distance. One day on the phone she was telling me about her mounting insecurities. She said, “I don’t know how to tell whether I’m not going out and driving because I’m afraid, or because I’m being sensible.” It's an important question, one worthy of reflection.

During any major life transition, the way we act and live is often similar to the way we have always lived , only more so. The stakes are higher, but so is the potential cost of acting without reflection.

By contrast, let’s say my life happens to be going along uneventfully. I’m in a “life as usual” phase, that moderate standard against which I measure my ups and downs. Many decisions can easily be made in an ordinary day...
...without questioning the place in me from which I make them.
Do I think, act, and live from fear? from commitment? or (as my life partner does) from gratitude and awe? When a crisis surfaces in my field of awareness, I see what I hadn’t before. My eyes have been opened by these new circumstances. For many of us, when crises hit, the wind picks up, and the way we steer our little boat of life becomes critical.

Are you driven by a need to feel competent or useful? Or by the need to be recognized? Are there saner criteria for prioritizing, more creative ways to accomplish practicalities that leave you spare cycles for tending to your heart and relationships? Maslow tells us, “When all we have is a hammer, everything looks like a nail”. What might be possible if we all stopped trying to nail down life? What if we embraced change to see “crises” as full of possibility?

My sister was contemplating fear vs. practicality. What if the options were fear vs. possibility? How do we know, when we say No to life, if we’re unnecessarily limiting ourselves and others? How often are daily decisions merely fear masquerading as common sense? Who would we be if we lived first out of possibility, then tempered it with discernment?

THE INTENTIONAL CAREGIVER - PART FOUR

2011-04-23T11:00:00.002-04:00

Here's another sneak preview of the “The Caregiver Hour” April radio show series entitled “The Intentional Caregiver” (see more info below). Here, we're looking at the weekly topics through the MindfulCaregiving lens. On Monday, 4/25, in this final show in the series, Kim and I will wrap up the month by sharing the most powerful key to a caregiver's peace of mind. Our guest will be Debra Young, Owner of Empowerability, LLC. See below details for tuning in or catching archived shows.

Part 4 — The Payoff of Intentional Acceptance

What you resist,
persists
— Carl Jung

Caregiving is littered with opportunities to practice the opposite of acceptance, resistance. It is normal to resist the behavior of others, the aging of your loved one, your own feelings of powerlessness, or the undeniable facts of aging and caregiving. That grip of tension in the jaw or solar plexus can be a sure sign that resistance to something is kicking in.

Resistance is one of the caregiver’s biggest energy drains. When you’re angry, frustrated, or judgmental, you’re locked into negative energy. The more you resist, the more time and energy you waste, the more resistance there is, and so on in a self-perpetuating drain cycle.

So, what to do with that? We start where we must always start, by looking straight at it. Even as we’re groping for a different action to take, it can be that the only right action is inaction. Stop. Take a breath. Notice what is. You can’t get beyond resistance until you clearly see it. What do you resist in caregiving? Make a list. Just seeing the list in front of you can give you some power over it.

What then? “What You Resist Persists” means also that “What you focus on is what you get.” Focus too long on being angry and you experience more anger. Focus on another’s annoying behaviors and you see only those annoying behaviors. Or, as Abraham Maslow put it, “When all you have is a hammer, everything looks like a nail”. So we don’t want to focus too long on our list.

Then what can we do? Steadily and intentionally question the source of the resistance and then seek out opportunities for acceptance, or allowing. Your greatest freedom rises from your power to intentionally choose to accept as much as possible in this caregiving journey of change. As the serenity prayer suggests, accept the things you cannot change, change the things you can, and be aware of the difference. I would add to that, then REfocus. When you see things you cannot change yet have a hard time accepting, refocus.

You can’t change other people, you can’t change many things in the course of caregiving, but you can wrest some peace from the grip of negativity, fear, and judgment. It takes no time at all. In fact, you can save precious moments, reclaiming them through acceptance and refocusing.

Check out “The Caregiver Hour” Radio Show

Throughout April, the topic of “The Caregiver Hour” weekly radio show will be “The Intentional Caregiver”. In four shows, Holly will join host Kim Linder and her guests to empower caregivers to approach caregiving with mindful intentionality.

“The Caregiver Hour” airs every Monday at 11:00 EST online at http://www.thecaregiverhour.com/ or on Tampa Bay radio WHNZ Station 1250 AM.

RECAP - THE INTENTIONAL CAREGIVER - PART ONE

2011-04-04T14:38:00.002-04:00

Here's what happened this morning on show #1, "The Cost of UNintentionality"...

We had a rich first show in “The Intentional Caregiver” April series on The Caregiver Hour radio, with host Kim Linder. Kim had graciously invited me to co-host the show, and we had two fabulous guests who spoke from quite diffrent perspectives about “The Cost of Unintentionality”.

Michele Gravelle, President of “Successful Conversations Now” is an expert on making relationships work. She is also long-distance caregiver for her 83-year-old parents. She brought the caregiver listeners deeply personal and powerful insights as she shared how she applies her knowledge to her caregiving. My take-away from the show? That Michele knows when she is acting UNintentionally (automatically) by the feelings in her body. Tension in her gut tells her to stop, take a deep breath, and question whether the way she is being is the most effective. She gets back in touch with herself. From that point, she said, numerous options and choices become available. Michele can be reached through http://successfulconversationsnow.com

Susan Avello, VP of AgingInfoUsa.com, broke wide open the much needed conversation about the “juggling act” experienced by working caregivers. She not only encouraged caregivers in the workplace to talk to their HR person about how the company can support their caregiving workers (20%-30% of employees!), she also emphasized the business advantages to companies ensuring that their caregiving employees are supported at work. Informational lunches led by local support services are one (often) free and effective way to give employees access to the support they need in order to keep working, and to minimize stress and downtime. AgingInfoUsa is a national company that advises corporations on how to put caregiver support programs in place.

The show also included Linda Burhans, Author and Caregiver Advocate with Harmony Home Health. They're having a contest for caregiver stories! Linda and Harmony Home Health are writing a book that is a collection of caregiver stories. For more, go to http://www.harmonyhh.com/caregiver-contest-tell-us-your-story/

Join us next Monday, 4/11, from 11-12 noon (EST) at www.thecaregiverhour.com for show #2 in the series. We’ll be talking with two more great guests about “The Payoff of Intentional Self-awareness”.

THE INTENTIONAL CAREGIVER - PART FOUR

2011-03-19T13:13:00.012-04:00

Here's another sneak preview of the “The Caregiver Hour” April radio show series entitled “The Intentional Caregiver” (see more info below). Here, we're looking at the weekly topics through the MindfulCaregiving lens. Last week's topic was "The Payoff of Intentional Connection", now available in the archive below.

Part 4 — The Payoff of Intentional Acceptance

What you resist,
persists
— Carl Jung

Caregiving is littered with opportunities to practice the opposite of acceptance, resistance. It is normal to resist the behavior of others, the aging of your loved one, your own feelings of powerlessness, or the undeniable facts of aging and caregiving. That grip of tension in the jaw or solar plexus can be a sure sign that resistance to something is kicking in.

Resistance is one of the caregiver’s biggest energy drains. When you’re angry, frustrated, or judgmental, you’re locked into negative energy. The more you resist, the more time and energy you waste, the more resistance there is, and so on in a self-perpetuating drain cycle.

So, what to do with that? We start where we must always start, by looking straight at it. Even as we’re groping for a different action to take, it can be that the only right action is inaction. Stop. Take a breath. Notice what is. You can’t get beyond resistance until you clearly see it. What do you resist in caregiving? Make a list. Just seeing the list in front of you can give you some power over it.

What then? “What You Resist Persists” means also that “What you focus on is what you get.” Focus too long on being angry and you experience more anger. Focus on another’s annoying behaviors and you see only those annoying behaviors. Or, as Abraham Maslow put it, “When all you have is a hammer, everything looks like a nail”. So we don’t want to focus too long on our list.

Then what can we do? Steadily and intentionally question the source of the resistance and then seek out opportunities for acceptance, or allowing. Your greatest freedom rises from your power to intentionally choose to accept as much as possible in this caregiving journey of change. As the serenity prayer suggests, accept the things you cannot change, change the things you can, and be aware of the difference. I would add to that, then REfocus. When you see things you cannot change yet have a hard time accepting, refocus.

You can’t change other people, you can’t change many things in the course of caregiving, but you can wrest some peace from the grip of negativity, fear, and judgment. It takes no time at all. In fact, you can save precious moments, reclaiming them through acceptance and refocusing.

Check out “The Caregiver Hour” Radio Show

Throughout April, the topic of “The Caregiver Hour” weekly radio show will be “The Intentional Caregiver”. In four shows, Holly will join host Kim Linder and her guests to empower caregivers to approach caregiving with mindful intentionality.

“The Caregiver Hour” airs every Monday at 11:00 EST online at http://www.thecaregiverhour.com/ or on Tampa Bay radio WHNZ Station 1250 AM.

THE INTENTIONAL CAREGIVER - PART THREE

2011-03-13T10:43:00.016-04:00

Here's another sneak preview of the “The Caregiver Hour” April radio shows. (More info below) Here we look at “The Intentional Caregiver” topics through the MindfulCaregiving lens. Last week's topic was "The Payoff of Intentional Self-awareness".

Part 3 — The Payoff of Intentional Connection

The time will come when,
with elation you will greet yourself
arriving at your own door, in your own mirror
and each will smile at the other’s welcome
— Derek Walcott from “Love After Love”

Connection is our life’s blood—our connection to others, and our connection to ourselves. Some would add our connection to a Higher Power. Yet, like clothes in a washing machine, the intensity of caregiving’s “agitation cycles” can weaken the connective tissue of our lives. Relationships strain. Personal time dwindles. It takes intentionality to notice what we are sacrificing. We can even become so focused on Doing actions and service for our loved one that we forget to simply Be with our loved one, but that may be a thing we can’t afford to neglect.

The burgeoning movement promoting person-centered care ("Real Care Reform") in long-term care facilities is finding that putting human connection first when caring for another actually improves the well-being and physical health of everyone, the cared-for and the caregiver. The staff of the Eden Alternative Green House nursing homes know intimately the way intentional connection combats the three plagues of loneliness, helplessness and boredom (the three plagues that cause a person to lose interest in life.) They see people who have taken to walkers, or stopped speaking, begin walking on their own and speaking again. (See YouTube on “The Green House Nursing Home Alternative”, http://www.youtube.com/watch?v=l4Ap1ByNgKE. ) In these revolutionary nursing homes, human connection precedes and infuses the offering of medicines, baths, and especially meal times. Relationships thrive, while medical regimentation is virtually non-existent. Eden even has a program that bring the Eden principles into the home, teaching family caregivers how to create an environment for thriving. (To learn more, check out http://www.edenalt.org/eden-at-home.) (For more on "Real Care Reform" check out Eden founder Dr. Bill's blog at www.changingaging.org.)

If tending to connection with a loved one can improve the health of your loved one, what could more self-connection mean for your own well-being? Self-connection is found in the places, moments and experiences that fuel your spirit and balance your life.

If your own well-being were a priority for you, what would you do differently? Might you ask for help more often? If you are a can-do person, asking for help can actually empower you as it strengthens your connection to others. You become less alone, more flexible, your approach to life softens.

If you were to intentionally begin to notice the people, experiences and thoughts that drain your energy, and then eliminated most of these energy sinks, how much better would you feel on a daily basis? Eliminating energy sinks is a key way to rebalance your life so that it fuels you, day to day.

So take a deep breath. Intentionally focus on connecting with your loved one in ways that historically have been deeply meaningful to her/him. And in your private moments, do less of the things that drain you and more of the things that renew your spirit. Think empowering thoughts to leverage your well-being. Caregiving will be a kinder, gentler experience, a healthier time for everyone.

More about “The Caregiver Hour” Radio Show

Throughout April, the topic of “The Caregiver Hour” weekly radio show* will be “The Intentional Caregiver”. Over a series of four shows, Holly will join host Kim Linder and her guests to empower and enlighten caregivers on approaching caregiving with mindful intentionality.

“The Caregiver Hour” airs every Monday at noon EST online at http://www.thecaregiverhour.com/ or on Tampa Bay radio WHNZ Station 1250 AM

THE INTENTIONAL CAREGIVER - PART TWO

2011-03-07T13:59:00.006-05:00

Here's a sneak preview of the “The Caregiver Hour” April radio shows. (More info below) Here we look at “The Intentional Caregiver” topics through the MindfulCaregiving lens. Last week's topic was "The Cost of UNintentionality".

What’s Your Winning Formula?
The Payoff of Intentional Self-awareness

“We need to let go of fixed ideas, behaviors, attachments...
Unfettered, your true self flows to the surface
and moves you toward your purpose...”
~ Gabrielle Roth

Most of us think we know who we are. Our personalities, skills, attitudes, and values give us survival strategies for building a life that feels safe. Then caregiving hits. As we shift into full gear, how we respond is determined by our habitual tactics of the past.

At some point familiar ways of operating can stop working. As Sydney Rice-Harrild tells us in her book Choice Points, “We all have an internal system for producing results that operates on its own, helping us to produce consistent results without our even having to think about it, but it doesn’t work in our favor when what we want is managed change.” Caregiving IS change.

Not to worry —with a bit of intentional self-awareness you can prepare yourself. Start by making a list of your personal skills, traits, and strengths, sometimes called your “Winning Formula”. What’s Your winning formula? Notice how these tactics can serve you during caregiving. Yes, you came equipped.

But as you look at your list, also consider the caregiving situations in which these might not work as well. Do you take charge, telling others what to do? That may not always be appropriate. Do you isolate yourself to get your bearings? There might not always be time for that. Knowing your habitual tactics will allow you to adapt when they don’t work. Being mindfully aware will let you intentionally unattach from your habitual behaviors, allowing you to be flexible. On some level, there are no good or bad character traits—there is only what works in the moment. Be a learner. Caregiving will be easier and you will be more effective.

Now broaden your effectiveness still more by noting on your list the opposites of those tactics. Might not these be useful tools to add to your caregiving toolbox? Ever-changing circumstances can require new approaches, new ways of thinking and being. An outspoken person may need to learn tact. A reticent person may need to take charge. Tuning your awareness to who you are being throughout a caregiving day gives you more options for effectiveness. Know who you are, and you can choose who you need to be.

Intentional Caregiving opens the way to greater ease, smoother relationships, and an increase in personal power. You can gradually learn how to build your resilience and move with the prevailing winds of caregiving.

In the next article we’ll dig deeper into this practice of intentional focus, looking at “The Power of Intentional Connection“.

And Check out “The Caregiver Hour” Radio Show!

On the four Mondays in April, the topic of “The Caregiver Hour” weekly radio show* will be “The Intentional Caregiver”. Holly will join host Kim Linder and her guests to empower and enlighten caregivers on approaching caregiving with mindful intentionality. All shows are archived on-line for later access.

“The Caregiver Hour” airs every Monday at noon EST online at http://www.thecaregiverhour.com/ or on Tampa Bay radio WHNZ Station 1250 AM

THE INTENTIONAL CAREGIVER - PART ONE

2011-02-25T07:48:00.004-05:00

Throughout April, the topic of “The Caregiver Hour” weekly radio show* will be “The Intentional Caregiver”. Over a series of four shows, I will join host Kim Linder and her guests to empower and enlighten caregivers on approaching caregiving with mindful intentionality. (See below for more details.)

Here on TransformingCaregiving over the next few weeks, I’ll share with you a sneak preview of the shows by looking at the topics through the MindfulCaregiving lens.

The Cost of UNintentionality

People avoid change until the pain
of remaining the same is greater
than the pain of changing.
—Unknown

For most of us most of the time, our ordinary mode of operating is fairly unintentional. We run on automatic. We systematize, schedule, and routinize our days, trying to maximize effectiveness while minimizing insanity. We respond to others in habitual ways. We solve problems using familiar strategies.

Though these ways of operating seem to work in the early days of caregiving, later on they can undermine us and our best intentions. Over time, our habits carry costs to both the caregiver and their loved one, costs that may sound familiar: emotional and physical exhaustion, frustration, diminished self-worth, deflated spirit, and even disempowerment for and dimished connection with the loved one.

But it’s not our fault that we fall into difficulties as caregiving intensifies. There is an old proverb about frogs that explains how we can find ourselves in hot water. If you put a frog into boiling water, it will jump out. But if you put it in cool water and slowly heat it, the frog won’t jump—it will die. Like frogs, we can refuse to notice when the water we swim in has changed. Because our familiar ways of operating have kept us safe and in control in the past, we are very leery of changing our approach. But if we don’t learn to change and change to learn, we will end up in hot water.

There’s a saying that “You get what you focus on.” If caregiving isn’t all you would like it to be, where are you putting your focus? Focus on struggle, and you get struggle. But focus on challenge, and you get more energy. Start observing how you habitually think and operate, and begin to experiment with other ways. Less and less will you let your energy leak away through focus on past regrets or future fears. Bit by bit, over the coming days and weeks, intentionally refocus your attention on who you are being and how you are thinking. More and more you will nurture your presence to your loved one, as well as your connection with yourself.

Intentional Caregiving opens the way to greater ease, smoother relationships, and an increase in personal power. You can gradually learn how to build your resilience and move with the prevailing winds of caregiving. In the next article we’ll dig deeper into this practice of intentional focus, looking at "The Power of Intentional Self-awareness".

*”The Caregiver Hour” airs every Monday at noon EST online at http://www.thecaregiverhour.com/ or on Tampa Bay radio WHNZ Station 1250 AM. The topic of the first “The Intentional Caregiver” show will be “The Cost of UNintentionality”, and the following three shows will explore the gifts of intentional self-awareness, connection, and acceptance. Expert guests will address the topic from a wide variety of perspectives. We are especially excited to have invited Chris Perna to join the conversation. Chris is the CEO of The Eden Alternative (http://www.edenalt.org) the organization leading the movement for person-centered long-term care. Thanks to Kim for letting me partner with her in the design of this series, offering caregivers a "new thought" approach to caregiving.

MindfulCaregiving Holiday Tips for Greater Peace

2010-12-06T15:34:00.003-05:00

Shift Your Expectations of The Holidays
The holidays when you’re caregiving are different, yet we bend over backwards to make them the same as they always were. At no other time are we so dedicated to pretending that nothing has changed. Preserve the simpler family traditions, but consider tossing out your more extreme expectations of the holidays, family members, and yourself. Stay in the present moment. Generate new, creative, simpler family traditions. Focus on gratitude for what you have now.

Shift Your Expectations of Others
People are different too. The demands of the holidays compound the regular stresses of caregiving to push family members to their emotional limit. If they need to act out, let them be. As hard as it may be to imagine, they may be doing the best that they can. Have compassion while asserting your own boundaries. You can’t make other people happy, or make them act the way you would want. You can only tend to your own state of mind and heart. Do what you can. Let that be enough.

Shift Your Expectations of Yourself
As your own stresses mount, lower the bar on your expectations of yourself. Make a little more time to decompress. Focus on your relationships more than the trappings of the holidays. Ask for a little more help from others. The happiness and holiday spirit of everyone else are not your sole responsibility. Balancing the holiday house of cards on your shoulders is a vulnerable position for everyone. Tell them that, and then ask for their partnership to help everyone get through the holidays a little happier, a little more peaceful, a little more grateful for all that you do have.

Creating the Nursing Home of the Future - Making Eden-like Culture Change on 2 hrs./wk

2010-12-04T14:30:00.005-05:00

Ever since my decade of caregiving, I’ve been determined not to end up like my mother. My nursing home is going to be a place where I can feel useful, valued, engaged, and loved. But why aren’t more residents clamoring for change right now?

Generational values and medical institutional norms in nursing homes collude to foster a system that will stay stuck without radical concerted culture change. Many of our Elders don’t know that we each have the legal right to define our quality of life, regardless of age or circumstance. And whether or not they know their rights, they were raised not to rock the boat. Who wants to be the one to speak up? Even some of us boomers have timid tendencies, yet if we don't begin now to change the culture of nursing homes, we'll be stuck living in "homes" that, despite bright colors and crafty activities, will perpetuate helplessness, loneliness, and boredom.

When I took the Eden Associate Training, my classmates were all employed in nursing homes—after certification they would put their training to immediate use. I was self-employed. I needed to find another way to be part of the culture change movement. I joined a newly formed Coalition for Culture Change (many states have one) but I also wanted to do hands on work. Finally I learned of our state’s Long-Term Care Ombudsman program. By going through their free training and dedicating just two hours per week, I would finally be able to do Eden-like work.

Now I think of myself as taking on Dr. Bill Thomas’ three plagues: Loneliness, Helplessness, and Boredom. When certified, I will be empowered to walk into my assigned nursing home unannounced and at any time, to engage directly with residents and staff on behalf of individual residents’ quality of life. Any Elder who feels they lack a voice or a choice can ask me to be her/his voice. And the state and federal Ombudsman offices will serve as my backup, the clout behind the smile.

Consider ensuring a quality future for your Elder self, while making a difference for Elders right now. Every state has a Long-Term Care Ombudsman program, though each operates a little differently. Contact your state Ombudsman Office to find out what’s possible. http://www.ltcombudsman.org/ or http://www.aoa.gov/aoaroot/AoA_Programs

RESPECTING ELDERS

2010-10-10T17:39:00.008-04:00

Bernie Siegel suggests in “Love, Medicine and Miracles” that it's the feisty, opinionated patient who stands the best chance of survival.

I recently gave a keynote address to a local caregivers’ expo. During the Q&A, one woman raised her hand and said, “What do You think about the way people talk down to old people?” I told her that it dumbfounds me, that I have no idea where people learn to think that’s the way to speak. And then I continued to wonder...

Why Do so many people talk baby talk to elders? Could an elder supreme court judge possibly enjoy being patted on the head? And for that matter, how do they get away with it? What keeps elder parents, pianists or Marines from kicking a few shins?

I remember when I would bring my still sharp Phi Beta Kappa mother out and about in her wheelchair, and doctors and other professionals would address me, speaking about my mother in the third person. Did they assume that her brain and self-respect had been gradually leaking away since she turned 70?

I guess people of my parents’ generation were so schooled in being gracious that they put up with such treatment without a fuss, but it’s going to be a bit different when the children of the 60’s enter elderhood. We broke the mold when it came to self-expression.

A nursing home filled with residents of the “Me Generation” will be quite a different story. We’ll be rebelling at every turn. We’ll be leading workshops to train the staff in providing truly respectful service. We’ll have a ringleader or two, and we’ll stage sit-ins at the nurses desk. We’ll demand that people knock before entering, bring breakfast only when we’re ready, and offer more opportunities for participation than sing-alongs and making cookies.

We’ll look for ways to improve the running of the place. We’ll take over the “activities program” and while we’re at it, we’ll come up with a different name for it altogether. Activities implies busymaking, as though all people need to feel enriched is to be kept active. We’ll have “life enrichment” programs maybe. Alive ‘n Kicking seminars. And if we can remember what we learned from Our elders, we'll do it with a bit of grace.

I daresay that "respecting elders" will mean something a bit different for us, the Boomers. It will mean something like listening to what we want, appreciating us for who we are, connecting with us on a personal level, and honoring our history.

If you were in a nursing home, what would you want your life to be like? What would you be doing? What new experiences will you be instigating? Who’ll be calling the shots for you?

Person-centered Caregiving

2010-09-10T12:56:00.001-04:00

I recently was asked by a local Hospice to meet with a patient (I’ll call her Ann) who had created a piece of artwork. They wanted me to consider writing an article about it, and her. She was a lovely, feisty woman. I met with her a number of times, taking notes as she spun out the stories behind the artwork and her process in making it.

Though the artwork had brought me to Ann, what became most important was Ann’s journey. I continued to write and will publish an article, but the point of our meetings became connection. The life of our budding relationship feeds the life of the article I am writing. When I stray to focusing on the article as an end in itself, the relationship Ann and I are building loses energy. When I focus on Ann, the writing comes to life. The life of both depends on the life of our connection.

This is a perfect analogy for caregiving. In the busy life of a family or professional caregiver, it can be too easy to forget, to mistakenly become too focused on the day-to-day tasks and agenda, and thereby sap the life of the human connection with a loved one, which is the true source of healing and wellness. Mind-body-spirit wellness. Excessive focus on the tasks of caregiving saps your relationship, and drains both you and the life of your loved one or client. Focus on your connection, in service to the wholeness of your loved one (as Rachel Naomi Remen would say) and you’ll find that you both have more energy. If you have neglected to make a bed, opting instead for having a good laugh together, good for you! If you are being drained by care giving, check out where your focus has been and change course.

This principle of Human Connection First, or Person-centered Care, is the core principle of the culture change movement in nursing homes that is radically changing the experience of living in long-term care. It is the catalyst of wellness for care receivers and givers. To learn more, check out the Eden Alternative (www.edenalt.org), The Pioneer Network (www.pioneernetwork.net), and the ChangingAging blog (www.ChangingAging.org) and his ChangingAging LinkedIn discussion group (http://www.linkedin.com/groups?mostPopular=&gid=2942890).

This movement was begun by Dr. Bill Thomas and is spreading, now backed by the federal government in changes in the annual nursing home surveys. Nursing homes are now being designed, architecturally and in management structure, to follow the Eden Alternative principles. The result? Some residents who have been walking with walkers, throw away their walkers. Others who have stopped speaking and feeding themselves sing “Amazing Grace” and grab the spoon. (See YouTube on “The Green House Nursing Home Alternative.” http://www.youtube.com/watch?v=l4Ap1ByNgKE ) Staff retention dramatically improves. And, miracle of miracles, it doesn’t necessarily cost any more than the old model. It actually can be cheaper. Read about the data in “Culture Change Goes Mainstream,” downloadable at http://www.linkedin.com/myprofile?trk=hb_tab_pro. The Eden Alternative also has a program for family caregivers.

As I write this, I am at home with the latest “bug” that has been going around. I had to cancel my visit with Ann and will deeply miss her this afternoon. We were going to play Scrabble together. When we do get to play, I’m betting that she will win.

From Caregivers to Carepartners

2010-07-11T10:30:00.005-04:00

When we begin to focus on Elders as people who continue to "grow and become," we open to what they have to offer us. Seeing Elders as mentors with something to give helps us make the leap from caregiving... to care partnering. When those usually described as care receivers learn they have something to give - and there is always some way that they can, no matter how subtle -and those usually described as care givers deeply acknowledge the ways that they receive from care receivers, some amazing shifts occur in the care dynamic. They become Care Partners."

Instead of seeing the needs of 'caregivers' as separate from the needs of 'care receivers,' we need to focus on the well-being of the whole care partnership. At the Eden Alternative, we firmly believe that words make worlds. Like the term 'Elder,' the phrase 'Care Partner' is an excellent example of the transformative power of choosing our language carefully. As a concept, care partnership evens the playing field, as it is often easy to get trapped in a one-dimensional experience of care. With this in mind, teams must fully appreciate what it means to be a care partner team. The term "care partner" should never be used simply as a politically-correct replacement for the words "staff" or "aide" or "caregiver/care receiver." Care partnership encompasses so much more, both in nursing homes and out in the larger community.

By our definition, a care partner team is composed of the following care partners: the Elder herself; those care partners who work with her, whether they work in a nursing home or through home health support; her family members, friends, volunteers, and any other health professionals that collaborate with her. Care partnering implies a balance of care, that opportunities to give as well as receive are abundant and experienced by everyone involved in the care relationship in every moment. To deepen the experience of care partnership, consider holding Learning Circles on the subject that bring Elders and all of their care partners together.

From the Eden Alternative Tip of the Week, 7/11/2010
Understanding Care Partnership
http://www.edenalt.org

FROM CLUTTER TO HOARDING

2010-06-18T11:20:00.008-04:00

What can a person do when they think a loved one has an unhealthy amount of stuff in their living space? A recent LinkedIn discussion on hoarding got me to thinking, What are the issues raised by such a situation? And how can family members disentangle from their own feelings about clutter for long enough to know how to broach the topic, or even whether it is appropriate to say something?

As both a caregivers’ and Elders’ advocate, I can see both perspectives. As the discussion developed, I saw not only how easy it would be, in the heat of the moment, for us to sidestep the issues of an Elder’s individual right to choose, I also saw how very fuzzy the line is for most of us between “normal” clutter and a compulsive health issue.

If a caregiver asked my advice as a caregiver’s coach, I would first ask questions to identify the context of the situation, such as:

Is your loved one’s behavior diminishing her/his enjoyment of life? Or would (s)he be dismayed at the idea of having their clutter being gone?
Is the situation, right now, a serious health hazard?

If the caregiver were unsure of whether a health hazard existed, or if the loved one’s clutter was actually providing a healthy comfort, I would tend to think that any intervention would be inappropriate, though an explorative conversation with the Elder might be of help. Before speaking, it would be important to be very clear as to one’s feelings and motivations, and so I would ask the caregiver:

How much of the “problem” rises from Your discomfort with clutter? What does it mean to you?
Does some of your discomfort come, perhaps, from seeing your Elder behaving in perhaps an uncharacteristic way? Does it, let’s say, look like “slipping?” Or losing control? (Anyone applying this sort of judging attribution probably won’t be effective in starting a respectful conversation.)
Are you capable of broaching the topic with your loved one solely out of an intent to support her/him in having the lifestyle (s)he wants? Are you capable of separating your own feelings about it, from your desire to be of service?

The LinkedIn discussion ultimately gave helpful guidance in discerning the difference between “normal” clutter and chronic hoarding. Everyday accumulation of stuff is not to be confused with the mental illness of hoarding. When thinking about a loved one’s propensity for clutter, it pays to know the line between normal clutter and chronic hoarding. Learn more rather than risk overstepping the personal rights of your loved one. Visit The National Study Group on Chronic Disorganization (NSGCD) at www.nsgcd.org where they’ve identified a five-level hoarding scale to help determine a person’s level of need, as well as the level of training required of those seeking to help them. Levels 1 and 2 are degrees of normal clutter. Levels 3-5 represent behaviors ranging from mild compulsion to mental illness to health hazard. These last three levels may require the help of professionals (with the Elder’s agreement) such as professional organizers or mental health professionals. For health hazard situations, if respectful conversation hasn't worked, before calling the health department try to rally the family to stage an intervention.

My advice? Each of us at any age has a right to make our own lifestyle choices, so tread carefully when considering taking action on behalf of a loved one. Talk to your Elder first, then family. Get support for yourself, and ask advice of professionals. But if your loved one is level 1 or 2, with no apparent hazard to their health or well-being, let them be. Each of us has our own standards of neatness and cleanliness. And consider this: creation of clutter and upset about it are rarely about the stuff.

Who Will You Be in Caregiving?

2010-04-21T15:10:00.013-04:00

Using the Enneagram for Effective Caregiving

The real act of discovery is not in finding new lands,
but in seeing with new eyes.
—Marcel Proust

When I was a kid, one of my role models was Horton the elephant from Dr. Seuss. His phrase, “I meant what I said and I said what I meant—an elephant’s faithful, one-hundred percent!” became my childhood mantra. It was important to me to be dependable and to speak intentionally, and it still is. Since then, these values (or traits) and others have guided my life, but they haven't always been enough.

Each of us knows the character traits that make us strong and help us to thrive. What are your best loved character traits? Which ones have gotten you through tough times? Which ones have made your relationships work? Especially in the early stages of caregiving, these character traits will help you.

But, increasingly, caregiving will stretch you. If you have been a verbal person, you may need to hone your listening skills. If you have been a habitual giver, you may need to develop boundaries. If you have been a problem solver, you may be called on to accept life as it is.

The Enneagram, a powerful and flexible personality typing system, can serve as a useful tool for revealing how you can grow in order to do the caregiving to which you are committed. The following table gives you a glimpse of how the system might be used. With further study, it can help you not only to navigate caregiving, but also to manage your relationships with family and professionals. To learn the richness and depth of the Enneagram, visit
http://personal-growth-counseling.com/enneagram.html.

Below is a simplistic list of the nine personality types of the Enneagram. Next to each is the “growth point,” or the characteristics that such a person might want to strengthen.

THE NINE ENNEAGRAM TYPES & OPPORTUNITIES FOR GROWTH

Type 1 - The Perfectionist, or The Judge
Knows what is correct and right. Sees in black and white.
Grows by knowing what they want, instead of what would be right.

Type 2 - The Giver
Central focus is on giving to others. Can feel they deserve something in return.
Grows by discovering what they themselves want, and by being alone.

Type 3 - The Showman or Achiever
Conscious of image, action and performance.
Grows by seeing themselves separate from image and achievement.

Type 4 - The Tragic Romantic
Loves the drama of life, but can look too much for what is missing.
Grows by appreciating and feeling satisfied, knowing what they have is enough.

Type 5 - The Student or Observer
Loves to learn about a variety of subjects, but self-sufficiency can cause isolation.
Grows by entering the realm of their feelings, joining mind and emotion.

Type 6 - Problem Solver or Skeptic
Fear causes a preoccupation w/ safety and trust issues, the need to nail down loose ends of life.
Grows by developing faith and the courage to be their own authority.

Type 7 - Playful Optimist
Playfully imaginative, looks for the pleasures of life, but can seem self-indulgent.
Grows by staying instead of leaving, dealing with their pain, developing emotional depth.

Type 8 - The Boss or Challenger
Wields authority, fights passionately for justice, can enjoy a good arguement.
Grows by learning to wait, listening to the other’s perspective, questioning their ideas.

Type 9 - Peacemaker
Instinctively understands others, but can lose connection with self.
Grows by clarifying the self, by maintaining boundaries for self in the face of conflict.

3 Principles & 9 Tips from “The Caregiver’s Compass"

2010-03-24T12:08:00.006-04:00

In “The Caregiver’s Compass”, the reader applies a few basic principles to a wide range of caregiving issues and experiences. Whether looking at the value of anger, navigating crises, recharging the spirit, or picking your battles, the reader learns:

First, be present, since it is only in the present moment that any of us makes a difference at all;
Second, monitor your thoughts and the words with which you describe your caregiving. Since language creates reality (Searles, Flores), choose your words to create the best possible experience for you and your loved one;
Third, notice your resistance to moments, circumstances, and people. Since “what you resist persists” (Jung), by choosing to allow things to be as they are, they are free to move and you can become unstuck.

Some tips or points to remember from the book include:

If you’re going to make something up, make it life-serving. Speak and think in a way that generates the kind of caregiving you want to be doing.
What you resist persists.
Fear is usually not an indicator of a life-or-death crisis.
Asking for support in the form of partnership can be empowering.
Whatever your strengths, caregiving will call on you to stretch. Do what works rather than what is habitual.
You can’t change someone else—you can only change your part of the equation.
Give enough, but not too much. Helping or fixing can disempower your loved one.
You already know the things that lift your spirit. Tend to them.
Let humor grease the skids of your day.

Read what others are saying about "The Compass" at www.caregiverscompass.com
Buy "The Compass" at Amazon.com at http://bit.ly/du1TGy

Uplifting Spirit During Caregiving - An Inquiry

2010-02-16T09:25:00.008-05:00

This is the way you slip through into your innermost home:
close your eyes, and surrender.
—Rumi

You may recognize spirit in its absence—when you feel drained, weak, or depressed—but what calls spirit to rise to the occasion of life, especially during caregiving? Where do we connect with spirit? What heals us?

There are many ways to think about spirit. Some are organized bodies of thought about our relations with the eternal. Others speak to the degree of life we feel within us that has more to do with our relationship to our inner being, and it shows up as... well... uplift. Some say the growth of spirit is about all of that, suggesting that a life force, around us and within us, connects us to humanity, nature, and the All of creation. Whether you are clear about your beliefs, are a seeker, or have no particular spiritual beliefs, the following inquiry may offer you some new access to inner peace.

I believe, as many do, that caregivers with some form of spiritual practice have an easier experience. So where does one begin? One community adept at moving the spirit is the Quakers, or the Society of Friends. I was raised Quaker, which for me has been less a set of beliefs than it is a way of being, a way of thinking and living. The skills I learned for Quakerly, compassionate reflection put backbone into my caregiving, were the “rod and staff” that kept me vertical.

As there are numerous ways to speak about spirit, there are many places we can find it. The book Faith and Practice, from the Society of Friends, suggests that we might find inner peace “through group worship; through a relentless pursuit of truth; through a sense of the beauty and wonder of the world about them; through meditation; through art, music and literature; through sympathy and love in the family, and among their fellows.”

Certain locations or times of day can be conducive to connection with your life force. My spirit is most alive in the early morning when I feel at one with nature. As John Woolman tells us in his Journal and Essays, “The place of prayer is a precious habitation... I saw this habitation to be safe, to be inwardly quiet, when there was great stirrings and commotions in the world.” Communing with the spirit makes everything a bit quieter, a bit easier. It calms the “great stirrings and commotions” of caregiving.

Caregiving forced me daily to seek ways of healing my spirit, and so I created my own ways of communing with spirit. As Idrove to visit my mother in the nursing home, I would visualize aprotective cloak around me, a barrier to the force of her negativity. Ihad never been one to pray, but one day as I drove, I found myselfspontaneously saying aloud, “Dear God, still my soul. Bring me thypeace. Give me a vision broad and blue to tent my day.” Verbalizingthis prayer gave me instant peace.

I gradually learned to choose life exactly as it was. Saying “Yes” to my life became one of my biggest tools for leveraging my well-being. But then there were times when I just felt like quitting. In such moments, my prayers took on a more infantile tone. I’d like to go away with God’s blessing. I’d like Him, or someone, to clean up my life, saying, “You go on now. I’ll take care of this mess and these people.” So maybe I’m not a mountain climber after all. Maybe walking by the water in the valley will really make my cup run over.

Wanting to seek relief or to take a break is so very human. You can make room for that feeling too. As you allow your state of mind, whatever it is, and accept that you are merely a part of a much bigger whole, life gets easier. You may need to set aside time to tune in to your spirit, or you may be able to do it moment by moment
during the day. Whatever it takes, whatever it means to you, for the sake of everyone involved, make spiritual recharge a priority.

My Prayer of Acceptance

Listen here! I’ve done my best!
(Now I lay me down to rest)
I won’t stop here but could this be...
(Where is thy staff to comfort me?)
Don’t need to know what waits me there
(Be thou my comfort and support)
But keep me well. And keep me whole
(And after all, be still my soul.)

SETTING LIMITS & BOUNDARIES

2010-01-22T12:04:00.004-05:00

(Harmony) is when...
“Yes” is tempered by a gentle “No,”
and “No” is expanded with measured compassion.
—Mrs. Chana Rachel Schusterman

While times for silence in caregiving can be a rare gift, opportunities for defining boundaries and setting limits abound. As your loved one ages, your role can shift before your eyes. Within a given day, you may function as child, nurse, entertainment committee, adult friend, healthcare advocate, sibling and/or spouse, each role requiring a somewhat different voice. Notice that most of these roles are in response to others. How easily we forget ourselves!

When dancing with your various and mutable roles, you can remain effective by staying centered in yourself. To stay centered in yourself during caregiving, develop the habit of identifying, protecting, and asserting your own limits and bounds. Notice where your responsibility stops and another’s begins. Notice what is yours to do, and what could or should be done by others. Notice what you need in order to be effective. If what you need must come from another, but is not forthcoming, ask for it. Setting your bounds and limits in your relationships and in your life is an art of balancing control with allowing. Here are some guidelines for promoting healthy limits and boundaries:

GUIDELINES FOR SETTING LIFE-SERVING LIMITS & BOUNDARIES

There is no perfect limit. A boundary is determined by who you are and the situation in which you find yourself. Some of the following suggestions may help you to fine-tune your boundaries.

If you are a responder in conversation, practice taking up more room in conversations than you usually would. Though this may, at first, feel like a big change to you, your increase in outspokenness is most likely slight. You can afford to experiment with making room for yourself.
Become a curious observer of yourself (and others,) rather than a harsh critic. Be kind, yet discerning. A harsh demeanor often shuts down relationship. Kind curiosity will have you setting your boundaries within the context of who you and the other person are.
Confront what scares you. Look at it head-on, journal about it, describe it. It will diminish. Lack of healthy boundaries is often rooted in fear.
Practice tolerance of ambiguity and uncertainty. Living more easily with unknowns promotes inner peace and diminishes fear. Boundaries established from this centered place in yourself will be better aligned with your true self.
Notice what is yours to handle, as distinct from what is someone else’s. It is too easy to jump in to handle what could be done by others. It could be damaging to try to do what is someone else’s prerogative. It is deeply frustrating to try to fix or change what cannot be changed (like another person.)
Limit yourself to doing one thing at a time. Like the turtle in the race with the hare, you may get there faster. Certainly you will arrive with greater peace.
Adjust your limits according to your comfort level. Setting your limits too rigidly increases discomfort. Be somewhat flexible, and you’ll be less disappointed. When you are disappointed, pay attention. Disappointment can show us our unhelpful expectations, as well as what could be more realistic.
Refrain from reading other people's minds. Keep your attention on yourself while simply being aware of others. Listen actively and take others at their word. Then ask questions when you don’t understand. Explicit communication goes a long way toward clearly seeing the bounds and limits of each relationship.
Focus less on managing outcomes. As much as possible, limit yourself to what you can do in the moment. If you manage the present moment, the future frequently takes care of itself.

Here are a few suggestions for gently asserting your boundaries in conversation:

A Linguistic Prescription for Empowerment

Say NO (respectfully) at least twice a day.
Experiment with words and phrases other than NO that mean what you want to say.
(This will provide safety until you can release the idea that "NO" means "I don't like you.")
Counter self-criticism with 'SO WHAT?'
When someone asks a question that is invasive, instead of answering and giving information you don't want to, respond with the question, "WHY DO YOU ASK?"
Accept compliments. Don't deny or over-explain. Just say THANK YOU, or better, "THANKS FOR NOTICING!"
When someone is overstepping your boundaries, a useful neutral phrase you can say, without apologizing or over-explaining, is, "That doesn’t work for me."
Speak using “I” statements whenever possible. They make clear where you stand without creating unnecessary confrontation or conflict.

Experiment with any of the above approaches that feel right to you. Trust your instinct for what will work for you. The better you know yourself, the clearer it will be where you need to strengthen your boundaries or limits.

SIMPLIFYING YOUR LIFE

2010-01-01T14:33:00.015-05:00

Once in a while
you have to take a break
and visit yourself.
—Audrey Giorgi

In an earlier blog, I wrote that balance is “to have equal amounts of the necessary elements such that no one predominates." Here we will be talking about having a balanced life, as distinct from emotional balance (though they are connected).

Life is change, and it will not magically simplify, yet with a little bit of thought you can take steps to simplify it. To do that, you will need greater clarity about what is working for you, and what isn’t.

Ordinarily, a good deal of life runs on automatic, guided by at least a mental calendar of obligations, if not an electronic one with audible reminders set to beep you like a drill sergeant. Rarely do we step back to question which of our activities are necessary, let alone which ones truly serve us. Below is a simple exercise to help you see new choices you can make that will make a little more room in your calendar.

The Housecleaning Matrix

(from The Caregiver’s Compass, due out in March 2010)

1. Take a fresh pad of paper and turn it sideways. List down the left side your
activities in a given week. Then make five or six columns to the right of your list.

2. At the tops of the columns put codes that indicate what you want more of in
your life. You’re going to be rating your activities and commitments according
to which satisfy your needs and values. For instance, the chart could show you
which ones cost money or make money, which ones give or take away your
energy or time. Think of the things that you want more of in your life and you’ll
know what to put at the tops of the columns. Add as many columns as you need
to reflect what is important to you.

3. Save a column to note which activities are for you and which are for others.

4. Below your chart, write a bit about what motivates you to do each one. This
will show you the underlying values. You’re going to be learning about the values
that fuel you in your life and those that don’t.

5. Put plus/minus signs, letters or symbols in each of the columns to indicate
which activities take from you, and which give back. Adapt the system so that it
works for you. If an activity gives you a lot of energy put two or three plus signs.
If one takes just a little time, show a small “t”. If an activity is for others but you
get pleasure out of it too, put both an O for “Others” and an S for “Self.” It will
begin to look something like this:

6. Write down all of your insights as you look at your completed matrix. Is it
severely out of balance in any aspect? Which activities would you be better
off not doing?

7. Now, on a new page, list the people in your life, and rate them according to
which give or take energy, which make your life simpler or more complex,
which support you, and which don’t. Housecleaning comes in many forms.

If it looks hard to make changes to improve your situation, remember, as Henry
Ford once said, “Whether you think you can or can’t you are right.” This is your
life. Preserve your inner resources so that you can do the caregiving to which
you have committed.

Hopefully you now see ways to lessen your obligations. With a little more time
in your calendar, might you be able to practice a little more selfcare?

A Caregiver's Affirmation

2009-12-12T09:51:00.001-05:00

Tomorrow is a new day; begin it well
and serenely and with too high a spirit
to be encumbered with your old nonsense.
— Ralph Waldo Emerson

As I cast my mind back over my life and my time of caregiving, I see the lessons I have learned, the growth I have experienced, the intuition I have tuned and strengthened. All this is available to serve me. I gather my resources and rise to the occasion.

When people aren’t responding as I would want, I have the intuition to recognize it, the voice with which to respond, and the wisdom to choose constructive words. When my support systems fail me, my purposeful resourcefulness will bring me through. Some supports can be mended, while others can be replaced. I have the inner resources to do what must be done. I am even strong enough to ask for help.

And more turmoiled moments, when my mind wanders into its “bad neighborhood,” I can take a mental step backward, raise my vision, and look at the whole of this caregiving journey within the context of my life. I am not the cause and I am not the solution. I am playing my part. That is all I can ever do.

Caregiving is an honorable service. I am a character in a complex play that I cannot fully understand and certainly cannot control. My presence and my compassion are my biggest gifts. I will look for opportunities to celebrate life.

A TIME TO SOW

2009-12-03T13:48:00.001-05:00

Each morning when I open my eyes
I say to myself: "I, not events,
have the power to make me
happy or unhappy today.
—Groucho Marx (1890-1977)

You can sow seeds of resilience by practicing the art of partnership, by using humor to heal, and by choosing happiness. Yes, happiness can be a choice.

Partnership may be practiced with a trusted life partner, sibling or friend. Teach your partner and others to act on your terms, rather than taking over. Partnership requires candor, collaboration and boundaries. First, you need to know what you want (which is not always easy to express.) Then, you will need to speak clearly and non-judgmentally in order to be heard. Your partner and family may need to listen in new ways to acclimate to your new ways of operating and speaking.

Since caregiving is serious business, it calls for the medicine of humor. Humor not only mitigates times of tension, it is therapy. Therapists use humor to open clients for growth. It moves you through your emotional terrain. It also boosts your immune system. It is healing. Make a list of the things you laugh at and the people who make you laugh. Stock up on funny movies and books. Prescribe for yourself daily laughter.

And if you think happiness just happens to you, think again. To some extent, we feel victims to our emotions... often to the degree that we think we are. Here, too, we can become proactive. Study the conditions that give rise to your happiness. Build into your life the experiences, people, and ways of thinking that bring on a episode of happiness.

Learning from Anger

2009-11-14T10:32:00.002-05:00

Anger is a signal,
and one worth listening to.
— Harriet Lerner, The Dance of Anger

As a culture, we are confused about anger. Is anger a good thing to let out, or an inappropriate self-indulgence? How can we manage it well if we’re not sure how to think about it? Might it even be useful to us during caregiving?

Before you get carried away with yourself, stop and think. Understanding your anger could be an act of self-preservation. Rather than denying anger or wishing it would go away, try thinking about it this way. Anger is normal. Not only that, within limits it can be healthy and useful. We’re not talking about pathological anger that is unleashed as a weapon to damage or control others. Rather, this is the domesticated variety that can be a highly valuable signpost.

Anger can let you know what you are ignoring. It may show you when you are neglecting your own needs. If you are over tired, haven't taken time for yourself, haven't been exercising or eating properly, you may over-react to things you would normally handle well.

Anger may also raise its head when you are resisting some aspect of life that you would be better off accepting. Caregiving gets a whole lot smoother when you look at what you’re resisting and accept what you cannot change.

If you have unrealistic expectations of yourself, others, the medical community or your caregiving experience you have set yourself up for anger. Life simply can’t measure up, so try lowering or changing your expectations.

Finally, anger will show you when you need to be speaking up about something. Feelings of constructive anger are often valid and understandable. When we tamp them down instead of exploring and expressing them appropriately, they build up.

The next time you find your anger welling up, ask yourself:

1. Is this an immediate life or death issue? If not then perhaps your reaction is out of proportion, or at best, unhelpful. When you take the time for a deep breath, you can see that these off-the-wall reactions give a clear message. If you have spoken harshly to someone, apologize. Ask them to understand the stress you are under. Then take some downtime. Take a walk. Do some yoga. The best way to respond to issues will be found. The answers will come.

2. Am I upset about something over which I have no control? You can’t change other people or certain aspects of caregiving. Of course there will be instances when you need to take action, but other aspects simply are as they are. You can always try to shift your interpretation of them, or even consider accepting them. If you find yourself thinking, “Why can’t he see what he’s doing?” or “Why can’t she be different!” stop and think about the other’s personality traits or changing life conditions. Who must they be to be speaking or acting as they are? Precious time and energy are spent railing against the personality or behaviors of others, when understanding them, even having compassion for them, and/or making clear requests gets a situation resolved.

3. Do I need to communicate about something important to me? If you do, plan out what you will say and how you will say it. What words might the other person be able to hear? Speak with compassion. Using “I” statements will make what you have to say easier to hear. For instance, let’s say you need to ask your life partner for help. Make your request cleanly, as in, “I am feeling major stress from doing all my usual home chores AND helping my Mom. Could we just talk about another way we could team up to get the household chores done? I think I might crack otherwise.”

Emotional availability to life is essential for vital living. It is part of being awake to life. When emotions are managed well, the ebb and flow between practical brain and emotional intelligence creates a rhythm that can buoy and empower you as you navigate caregiving.

Let your healthy feelings flow through you. Ride them, giving them their proper place in your scheme of things. Take considered action when you need to, but when a situation is out of your hands, relinquish control and give yourself energy outlets. Be patient with yourself. You are getting your new sea legs. As you move over the shifting ground of caregiving, accept the movement. With acceptance you may be present enough to see the blessings in this time. Look for them.

As always, if any aspect of caregiving feels to be too much for you, consider seeking the support of a good therapist or counselor. The relief alone of having someone totally there for You can take much of the pressure off.

Eden Alternative Transforming Long Term Care

2009-10-31T15:30:00.000-04:00

Just returned from an amazing three-day training, and am now a certified Eden Alternative Associate! http://www.edenalt.org

Because the training changes the way you See (not just the way you think) it was predominantly delivered with a right brain approach. Brilliant!

This work, begun by Dr. Bill Thomas, is transforming the experience of aging in nursing homes. Check out what we have to look forward to!
http://bit.ly/1W74z8

So how can nursing homes shift their culture in a way that works? There's more to it than is immediately obvious. On the surface in the video, you see some of the actions that can be taken, but underneath is the magical element without which the shift can't happen. It's a shift in the Being of everyone involved that rolls out as a beautifully designed step by step process. If you follow the Eden plan, it unfolds gradually as a journey. The change makes miracles in the health and well-being of the fortunate elders... and everyone. And it's cheaper than the traditional hierarchical model!

One last little benefit? Any nursing home taking this kind of approach will have far better ratings in the radically changed annual surveys. Here's more info on that from Pioneer Network: http://www.pioneernetwork.net/Policy/CMS/

How to Get Help

2009-10-19T10:12:00.001-04:00

Few things can make us feel crazier
than expecting something from someone
who has nothing to give.
— Melody Beattie

Asking for help is a primary skill for successful caregiving, and yet for many of us, asking for help isn’t easy. Why is that? What makes it so hard? Asking for help is counter-cultural. We are weaned on the message that going it alone is a sign of strength. Raised to be proud of our fortitude, we stoically forge ahead. Welcome to The Lone Ranger Syndrome. It weakens the fabric of relationships at home and at work. And in caregiving, this handicap does immeasurable damage to a caregiver’s effectiveness.

When you ask for help, you acknowledge a simple fact: We are each a part of a greater whole: a family, a community and a world. Back in the 1970's, we noticed a growing awareness of the ecology in which we live. Heightened ecological awareness teaches us what we can now begin to learn in caregiving—we are all interconnected. Given half a chance, our interconnection during caregiving can be one of our greatest assets.

Begin asking for help, and you’ll learn something startling. Requesting help can even be empowering. How can this be? Shakti Gawain, a personal development pioneer, observes that “You create your opportunities by asking for them.” When you open yourself to the possibility of asking for help, you gain access to a world of solutions you would never have accessed alone. By the options that you entertain, you are made resilient. By the wisdom that you find, you are made stronger. Others’ respect for you deepens and your bond with them grows. Now let’s look at how this specifically applies to building a caregiving team.

THE HEALTH CARE TEAM
Conflicting commitments can surface when you have an intuition that something is amiss with your elder, but you don’t feel confident about bringing it up with an aide, nurse or doctor. On the one hand, you want to do the best for your elder, be a competent caregiver, and/or nip in the bud a potentially dangerous situation. On the other hand, you may be afraid of looking stupid, diminishing your authority, damaging your relationship with the professionals, or seeming intrusive to your elder or other family members. Inner conflict breeds a double bind.

In the best of all possible worlds, you and the professionals are on the same team, protecting and caring for your elder. The way you develop this consultative team, even when you’re unsure of an exact problem, is by stepping forward and asking questions. You will learn soon enough which individuals are open to working with you and which ones are less than cooperative. That alone is good information to have.

If the doctor isn’t willing to answer your questions, get a new doctor. Nurses and aides vary depending on their experience, personality and degree of dedication. The good ones will welcome your questions. You are another pair of eyes in your elder’s medical picture. You can help them. To show yourself as a potential healthcare partner, you’re going to have to speak up, but in the right way. How successful you are has everything to do with the way you speak up. We’ll get to that in a minute.

FAMILY PARTNERS
Conflicting commitments can also surface when you are faced with asking for help from family members. Maybe your elder won’t listen to you. Maybe you’re so exhausted from laundry and medical phone calls that you don’t have time to just sit with your elder. You might ask someone you know to pitch in, a family member or a friend, but you are struggling with how to ask. Yes, how you ask determines your success.

Much of the way these conversations go also depends on your history together. If you have healthy relations, the worst you risk is that they will say “No.” But what if relations are less than healthy?
Functional families are rare. Most families have some degree of imbalance of power, inability to communicate well, or simply a lack of kindness. Against that backdrop comes your conflict. On the one hand, you may be afraid of seeming weak, as though you’re not up to the job. They may say “No,” or worse, be nasty or angry with you for asking. On the other hand, coming smack up against those fears and pushing you forward is your commitment to your elder and your commitment to yourself, to do the best job that you can.

Being conflicted about asking for help is perfectly normal, even commonplace. There exists a way of asking for help that works. The way you define your goal determines your success. Let’s say you are overloaded and need a break from caregiving. You want to call your sister to talk over the problem. If you define success as getting her to offer to help, you’re putting yourself in a vulnerable position and limiting your options. Further, if you become self-righteous, thinking, “She OUGHT to offer to help out—this is OUR mother!” you are setting yourself up for an upset. Your expectations are your worst enemy. Your goals and attitude are the golden keys to a successful conversation.

HOW TO ASK FOR HELP

1. DEFINE YOUR GOAL - First, define your goal simply and broadly. You want to know who you can depend on for what. If your sister agrees to help, it’s a bonus.

2. DUMP YOUR EXPECTATIONS - Your expectations will sabotage you every time. Expectations leave you wide open for resentment, an unnecessary drain on your energy. Get clear about who your sister is. Her life may be more complicated than you know. She may be having her own difficulty accepting your elder’s decline. Don’t threaten your relationship by hanging everything on this one conversation. There are usually a number of ways to solve a problem.

3. BE CLEAR - Be clear within yourself and explicit in your words to her exactly what you are asking for. Do you just want to vent and have her listen? Or do you want advice? Do you want to brainstorm solutions to a problem? Do you want her to participate in some way that works for her to help resolve the problem? Being clear and speaking clearly greatly increases the chances that you will get helpful results.

4. BE GRACIOUS - If you come around to asking your sister to pitch in, and she says “No,” listen to what is behind the no. Then thank her for considering it.

5. MAKE ROOM FOR THE UNIMAGINED - Finally, if you have received a response of "No," ask her what she would be willing to do to support you.

During caregiving, family relations can be full of surprises. Those you thought would be there for you may disappear, while others you thought were too distant may step forward. Know what you need for support before you approach anyone for help. Then ask each person directly what they are willing or not willing to do. Only then will you know the makeup of your support team.

After making all the requests you can imagine, re-assess your situation. If your needs are still coming up short, contact your local social service agencies. There may be free services in your area. There certainly will be people trained in the field of caregiving who can advise you about your options.

Embracing the Moment

2009-09-06T08:58:00.001-04:00

(from http://happydays.blogs.nytimes.com)

A reader responding to the Zen priest Norman Fischer’s post, “For the Time Being,” writes: Please, Mr Fischer... How do we/you go about resolving living in the moment with active engagement in the world?... If the awareness — the “embracing of the moment” — is available to everyone, we need more about how this can happen among the relentless demands of daily life.
Norman Fischer replies:

Well, very briefly, there is no contradiction between living in the world as it is and “embracing the moment.” Though a retreat may be helpful training, it is just that. Everything takes place in a moment of time — conflict, annoyance, love, peacefulness, anxiety. A moment of time is the only place we are alive, every day, all day long. We want to live all of human life, the good and the bad, but be able to be there for it, rather than try, unsuccessfully, to run away. Being there is more satisfying, more fun, and more effective. So I work with (for instance) caregivers for the dying, using mindfulness and presence to be there with patients and families, with grief and joy. I use it with conflict resolution professionals to help them be more clearly present with their own emotions, so they can help their embattled clients better. How do you do this? It would be great if I could write a post on The New York Times Web site that would explain it step by step, and that was all there was to it. Great, but too simple, of course. Yes, there are ways and techniques to employ, but the main thing is practice, repetition, reflection, effort, suffering, the usual. Eventually you are able to see that it does work. And you are continually challenged. You keep on practicing, keep on learning. It’s a process, and a commitment you are happy to make because you like it, and it works. Life gets better and more interesting. At least this is what I have seen for myself and in thousands of others. Maybe it is not everyone’s cup of tea.

Resisting Caregiving – The Science of Fine–tuning Your Emotional Accessibility and Mental Health

2009-08-20T09:41:00.004-04:00

(Harmony) is when...
“Yes” is tempered by a gentle “No,”
and “No” is expanded with measured compassion.
— Mrs. Chana Rachel Schusterman

Few of us have struck the perfect balance between empathy and self-preservation. While it is not widely discussed in health science and healthcare, resistance to the thought of caregiving is common, and can come from feeling too much—too much needful caring, or too much fear.

It is possible to be so entangled in love for a person that the thought of watching her/his decline feels impossible. Or if your loved one historically has been an unsafe person for you, abusive either emotionally or physically, you are likely to feel an aversion to getting that close. Too much caring can swamp you making you ineffective. Too great an aversion will limit your caregiving to merely basic maintenance. Or perhaps you feel pulled in two by simultaneous love and aversion. In any case, if you can approach caregiving as a series of learnings it can provide a precious opportunity for greater health, relatedness, and personal completion.

If any of the above feels familiar to you, yet you have decided to take on caregiving, you can learn to find a healthy and effective middle ground of healthy caring and emotional safety by fine tuning your emotional accessibility. Caregiving, for you, can be an opportunity to become more present to yourself while becoming a more effective caregiver.

For instance, if you feel empathetic to your loved one to the point of entanglement, your vulnerability will make caregiving a struggle. Notice if you have entanglements in other relationships. Then take steps to learn about developing your boundaries. Books and websites offer ample suggestions to get you started. Learning how to extricate yourself now, to reclaim an empowered sense of autonomy, will make all of your relationships healthier and all of life easier.

On the other extreme, if your loved one was unreliable or brutal when you were a child and you responded by shutting down your emotions, your challenge will be different. If being with your loved one clearly feels unsafe due to a history of emotional or physical abuse, or if you feel deep seated rage, consider contributing minimally or long distance. But if, as an adult, you have managed to gain some emotional balance about your shared history, this could be an opportunity to come to greater peace with your loved-one. Is it worth it to you to try? Only you can say. If, given your current adult status, it seems right and wise to attempt to resolve your history with your loved one, compassion could be the key to making the shift. You can’t change others, but you can shift the way you think and feel about them. You will need to stretch yourself, to work up some acceptance of who your loved one is, shortcomings and all. This doesn’t mean that what they did was right—only that they were who they were. The seeds of who (s)he is now were probably planted before you were born. Understanding and acceptance breed compassion. Compassion will allow you your fullest possible expression as a caregiver, and fuller self-expression in all of your relationships.

Making such a fundamental relational shift can be greatly facilitated by working with a trained therapist to move your boundaries. Whether you are entangled or aloof, a comprehensive self-care program can support you, but it is a bandaid compared to healthier boundaries.

Caregiving also brings with it an automatic shifting of roles that will help to rebalance your relationship. If your loved one becomes somewhat childlike, your adult self will begin naturally to take its place in the relationship. If your loved one is authoritative or judgmental, you can discover in yourself a new stronger voice than when you were a child. Adjusting to this shift takes time. It feels strange. You may find yourself both grieving and celebrating the change. Be patient with yourself. You are growing in ways that will pay off for years to come.

Caregiving: Bootcamp for Extreme Self-care

2009-07-26T14:54:00.001-04:00

You don't get to choose how you're going to die, or when.
You can only decide how you're going to live. Now!
-- Joan Baez

For me, caregiving was selfcare bootcamp. In 1996 I was 45 and about to get the lesson of my life. I had recently launched my new business as a life coach. My husband and I were settling into our new old home, a former one-room schoolhouse in small town New Hampshire. Then, seemingly out of nowhere, caregiving hit. I didn’t choose caregiving—caregiving chose me.

I had learned early in life to keep my negative, judgmental mother at a distance. When I finally acknowledged her decline, I could see that it was my turn to care for her. (My eldest sister had Parkinson’s disease, and my middle sister had handled our mother’s needs for seven years.) However, I had no way of knowing the changes I would undergo in the process.

Over the course of that decade my career diminished to part-time, my marriage and relations with my sisters shifted in dramatic and unexpected ways, and I got cancer. As life became increasingly complex, I began to notice changes in my temperament. I moved more quickly, laughed less, and was impatient with others. Fortunately I had my life coaching experience operating in my favor. I systematically began to apply to myself the life coaching techniques I had been teaching to others. These techniques sustained me throughout caregiving. They now form the basis of the Mindful Caregiving tools that foster well-being in my clients and readers.

Well-being requires balance—a balance between taking care of others and taking care of ourselves. Mastering balance calls for awareness. While most of us are keenly aware of others’ needs, we easily overlook our own. How can I spend time coddling myself?, we think. I knew I couldn’t optimally support others unless I took care of myself.
Reiki, massage, and laughter were top on my list of necessities, providing me with greater energy, self-connection, better sleep, less stress, and a lighter spirit. In my journal I wrote, "I even invented ways to laugh on demand. As I drove on errands, I would think of old croony love songs, and then sing them to myself in an Elmer Fudd voice, as though they were love songs to me: 'Fwy me to de moooon', or 'I wuv oooo, faw sentimental weasons.’ I laughed till I cwied and almost went off the woad.” Whatever works. I got serious about lightening up. I made time for inner peace.

I also learned to identify and articulate my needs. If you don’t know what you need, you can’t ask for it or go get it. Contrary to logic, I found that asking for help was empowering. All of my life, I had been remarkably oblivious to my own needs. I was, by nature and training, a giver. When I first realized I needed to ask for help, I felt like a failure. Aren't I supposed to be able to do this single-handed? Once I started going after what I needed, I was amazed at the energizing connections I found with others and with myself. My husband and I became true life partners. All of my relationships became more balanced.

Along the way, there were seemingly darker aspects of my experience that I thought of as teaching tools. Anger and illness were two that could not to be denied. Anger became a signpost to what I was ignoring.

As a culture, we are confused about anger, not knowing whether it’s a good thing to let out, or an inappropriate self-indulgence. How can I manage it well if I'm not sure how to think about it? What if your anger could be an act of self-preservation? Anger is normal and, within limits, it can be healthy and useful, signaling us when something is not as we think it should be. I’m not talking about pathological anger that is unleashed as a weapon to damage or control others. Rather, this is the domesticated variety that can be a highly valuable release valve and a helpful red flag.

Many illnesses are at least in part due to a weakened immune system and/or suppressed emotions. My cancer was yet one more teaching tool. I knew that if I didn’t learn from it, I might not have the time to live the life I wanted. It kicked my survival instincts into gear, mobilizing me to practice what I now think of as Extreme Selfcare. Extreme Selfcare goes beyond temporary feel-good experiences. It's a systematic full-scale housecleaning your life. I studied and fine-tuned my survival strategies, my commitments, and my relationships. Some were serving me, and some weren’t.

I analyzed my commitments, de-committing from any that were unnecessary or overly draining. I kept the ones that gave me energy. I also did a “fearless inventory” of my relationships. I questioned the necessity of being around people who were draining. I held close to me those that were uplifting.

The bottom line learning was that self-care is no frivolous indulgence, but an essential part of achieving good quality of life. Take it seriously and you’ll be healthier, inside and out.

So what keeps us from taking care of ourselves? Why do we choose short-term indulgence over long-term goals? Sometimes it comes down to a fear of the unknown and the discomfort that is generated by making life changes, even when those life changes ultimately benefit us. After all, we know we can survive under present circumstances—sort of—if only barely. We struggle to avoid change at all cost, even if the cost of that avoidance is our own happiness. Instead of learning how to thrive, we spend our energy trying to nip and tuck life into submission.
Others of us rebel against self-care, thinking of it as some form of restriction or deprivation, instead of a step toward a better, happier life. Living in wellness requires keeping our sights on the broader deeper value of life so that, when we're faced with a temporary self-damaging pleasure, we see it as less significant than the life for which we're shooting.

Caregiving taught me to live my life fully. I found my voice by speaking out when necessary. I learned when to put myself first. I gained a new sense of myself and a life of self-expression. I am now happier than I have ever been because I systematically engaged in the learning and proving ground of caregiving.

Culture Change in Nursing Homes

2009-06-29T08:21:00.001-04:00

This year the federal Centers for Medicare & Medicaid Services are finally upholding the Olmstead Act. Below are resources and information.

The Olmstead Decision of the Supreme Court (1999) states that: ... under the Americans with Disabilities Act, it is a form of discrimination to isolate and segregate persons in institutions when they can live like other people in the community and enjoy the benefits of society.

State surveys of nursing homes will now include a “self-determination” component that will be embedded throughout the survey, addressing all levels of nursing home operations. Below are some links to key culture change websites. Check out The Pioneer Network's 40 page document about the changes to the nursing home survey.
But first, here are some of the radical inspiring results of a typical culture change program:

Results of The Tupelo Project (Tupelo, Miss.)
The Tupelo operation has been cost neutral in a 99% Medicaid funded facility

Elders moved to the Green Houses without transfer trauma.
Elders report very high levels of satisfaction with their quality of life
Families report high levels of satisfaction with care.
Dementia related behavior problems have been markedly reduced.
A decrease in wheelchair use related to the short navigable distances.
A decrease in urinary incontinence.
An increase in appetite, food consumption with accompanying weigh gains.
A decrease in the use of nutritional supplements.
An increase in elder engagement in personal and household activities.
A consistent care staff with a 10% turnover rate in 2 years (nat'l average 90% annually.)
Two deficiency free state surveys.

VISIT THESE GREAT SITES to learn more!

Pioneer Network - http://www.pioneernetwork.net/
The Pioneer Network is a clearinghouse of information and resources about culture change in nursing homes. The Pioneer Network facilitates deep system change and transformation in our culture of aging.
"We: Create communication, networking and learning opportunities; Build and support relationships and community; Identify and promote transformations in practice, services, public policy and research; Develop and provide access to resources and leadership."

Eden Alternative - http://www.edenalt.org/about/index.html
Information and tools for making life better for our Elders and those who care for them.

Greenhouse Project - http://www.ncbcapitalimpact.org/default.aspx?id=664
A revolutionary new model of care developed by Dr. Bill Thomas. The ideas and Principles of the Eden Alternative with small houses for 6-10 Elders who require skilled nursing care.

Action Pact - http://www.culturechangenow.com/

Selftalk - Generating Your Caregiving Experience

2009-06-12T15:06:00.001-04:00

"Life is 10% what happens to you and 90% how you react to it"
~ Charles Swindoll

We all have our dramas. You know those moments, when your mind strays into your bad neighborhood. It doesn’t just happen at four in the morning. Even in the daytime, we invent useless stories about the past or future, stories that undermine our well-being. The better you can distinguish between your made-up dramas and the more useful interpretations, the more clear cut and smooth your caregiving path will be.

It all starts with paying attention to your language. Begin to notice the words you choose in conversation, in your emails, in your head. Notice the power of your thoughts. “I look like hell today!” “That guy is such a jerk.” “This is never going to work.” Each time you tell yourself even the most casual negative phrase, you are depleting your energy and knocking down your ability to cope, notch by notch. Some say you actually are creating your reality.

Society trains us to be assessment machines, firing off judgments about the world around. Just look at the headlines and you’ll see what I mean. And we do the same to ourselves. We forecast bad news for our lives so fast we're not even aware of doing it. “THIS EXPERIENCE IS GOING TO BE HARD.” “THAT FAMILY MEMBER IS GOING TO BE A PAIN IN THE NECK.”

As surely as the negative messages in caregiving undermine you, constructive messages make you stronger. Ask yourself each step of the way, What caregiving experience am I choosing? What caregiving reality am I committed to creating? What are the words and statements that will support me in reaching my goals? Practice the skill of editing your inner caregiving editorials. Ultimately, you will be able to reinvent the story of the rest of your life.

Musings on Balance, Imbalance and Change

2009-06-08T13:13:00.000-04:00

You might as well fall flat on your face
as lean over too far backward.
~ Thurber, James

A few years ago, I wrote in my caregiving journal, The balance is shifting. I'm putting more of myself in the mix, yet in other ways I’m holding more of myself back, so I'm not sucked dry. Sometimes it feels like some people suck all my stuffing out of me. Gotta keep my stuffing.

One dictionary definition of balance, perhaps the most usual, is “mental steadiness or emotional stability; habit of calm behavior, judgment, etc.” However, in my life, I find it to be more complex and interesting than that. Though balance can imply steadiness with a degree of predictability, it is Not mere stability. Balance implies a degree of control while in motion. In fact, a smidgen of imbalance is necessary if one wants to stay in motion. But when one is about to lose control, one’s condition becomes a “balancing act”. And when off-balance, one is about to fall on one’s face. But wait! Is that true? Things are not always as they seem. I have actually learned a few things from being off-balance.

In ‘98, I wrote, When Mom walks she must look up to keep good balance, and when I walk I keep looking down to stay in the moment. Funny. Perhaps I'd better look up so as not to get obsessed by the moment, but to see the bigger flow that I am a part of. A bigger flow in the moment. Keeping a focus on the bigger picture was a way of grounding myself during caregiving, to stay balanced while in motion. It enabled me to notice the learnings that surrounded me every day.

During caregiving, the times when I was off-balance were, though unnerving, the more instructive times. What do I learn from allowing myself to be off-balance? That I do NOT lose control—I learn to walk differently. I learn that I have far greater resources than I believe, (or than I tell myself). This all sounds so appealing that it’s a wonder that I still fear losing control. So maybe the goal is not to be IN balance, but rather to be ENOUGH in balance to keep from falling on my face. In fact, another definition is “in the balance, with the outcome in suspense”. Maybe not comfortable, but useful. Perhaps in caregiving we can look not so much for comfort as a survival strategy, but rather look for balance that makes for the good and vital living of this life.

There are many definitions of balance. In dance, balance means “to move in rhythm to and from: to balance one's partner.” So here we are again, thinking of balance in motion... as a way of dancing with Life?

In Maslow’s hierarchy of needs, stability is near the bottom under Safety Needs, while balance is listed under Aesthetic Needs, just two levels below Transcendence. So might balance be a state of beauty rather than a state of survival?

The dictionary tells us that balance can mean, “to have equal amounts of the necessary elements such that no one predominates.” Which brings us to the matter of having a balanced life, as distinct from emotional balance (though they can be connected).

During caregiving, when I was able to achieve that delicate balance of the right elements in the right proportion to each other in my life I would find moments of great peace... and then... life, being by nature in motion, would run past me and pull my carefully constructed life out of whack again. So I'd scurry to pick up the pieces. Much as I tried to keep my ducks lined up, they kept swimming away! Maybe the real problem was that I kept thinking those ducks should line up and stay that way. So maybe change isn't a problem—maybe it’s just life. “Just keep swimming. Just keep swimming" as Nemo says in "Finding Nemo." Not bad advice during caregiving.

Siblings - Acceptance As Damage Control

2009-05-26T09:16:00.001-04:00

"What you resist persists."
~ Carl Jung

Yes, it might happen... it could happen... that you are one of the lucky ones who has siblings ready, willing, and able to partner with you in caregiving your loved one. Bear in mind that when I say "partner", I am allowing a lot of leeway as to what that means. It could mean anything from being an emotional support from a distance, to actually sharing the responsibilities, decisions and the emotional roller coaster ride. So why is it so common for caregivers to feel abandoned by other family members? The answer is complex, and worth considering if you want to conserve your energy.

Notice the key words ready, willing, and able. A sibling may not be as capable emotionally as you thought, or his/her lifestyle may be more demanding than you knew. Or siblings may harbor resentments toward your "loved one" that render them incapable of being a useful support. Caregiving is a time when family dynamics kick into high gear. During my own decade of caregiving, one sister was stunningly absent and, when she was present, was brutal. I couldn't afford to sacrifice myself to my resentment. I learned years later that she had been dealing with a serious personal issue and had been doing work on her feelings about family. I had no clue.

Even dysfunctionality of the most average degree becomes suddenly challenging. If "looking good" was a high priority in the family, siblings can hide their troubles well, while the caregiver is doing such a good job of seeming competent that siblings have no idea what is going on. It can be hard to be honest, yet caregiving is a time for straight talk.

Then there's the stumbling block of magical thinking. Society does us a disservice by setting up the ideal of siblings as highly intuitive best friends. Our own expectations of what they should do or how they should behave will trip us up every time. We believe that they should magically know enough to ask the right questions, to offer the right help. Caregiving is a time for questioning our expectations.

Society also ties our own hands by setting us up to meet the ideal of self-sufficiency. This Lone Ranger Syndrome does immeasurable damage during caregiving. Few of us have learned how to ask for help. When family members seem to think that caregiving is life as usual, we fall into the hole of righteous indignation, wasting precious energy in resentment. We can find it difficult to be clear and forthright about what we need. In caregiving, the caregiver can't afford to operate in this self-defeating way. A systematic shift of thinking is the best damage control, letting you take back the reins of your well-being. Caregiving can be a time for asking for help.

Rigorously examine your thoughts, your family dynamics, and your expectations. Accept that you may not know everything about your sibling. Accept that (s)he may not be capable of giving real help, or may only be capable of minimal support. Write out a list of your own needs, and separately, a list of your wishes. Communicate them clearly to your sibling(s) with a clear request. Know that "No" is an acceptable answer. If you are going to conserve your energy, it has to be. At least then you will know where you stand. Accept that they are who they are and get on with your life. Your energy is too important now to squander it.

The good news is that where family can fail us, friends can come through in spades. If the ideal of family is a disappointment, choose your own new family. There is some freedom in acknowledging when the ideal of perfect family is nothing more than a mirage. Then you can get about the business of getting the support that you need. Think of your friends in light of your list of needs and wishes. Might some of them be there for you? Find yourself a loving community, a church or a support group that will be of help. Turn to local social service agencies for practical help in dealing with caregiving. They have endless resources and information. Many even supply respite services so that you can get away for a rest now and then.

Most pain is caused by resistance. Practicing acceptance whenever possible. The bottom line is, take care of yourself. Safeguard your well-being. Do your part by communicating, and then accept that others are as they are. When caregiving is over, family relations can often take another turn, this time for the better.

Choosing Your Battles

2009-04-19T08:38:00.001-04:00

Finish each day and be done with it.
You have done what you could.
Tomorrow is a new day;
begin it well and serenely and
with too high a spirit
to be encumbered with your old nonsense.

—Ralph Waldo Emerson

How much of yourself will you give? Which battles are worth waging? These are common considerations in caregiving. When you feel your energy rise, pumping you up to deal with a new issue, in that moment you have a choice as to the extent and nature of your response.

In ordinary times, unmet expectations are trouble. The high emotional stakes in caregiving can make the smallest issues loom larger. Expectations can make us lose sight of our goals.

A sibling forgetting to visit feels outrageous. The elusiveness of a doctor or administrator seems insupportable. If your expectations escalate a circumstance to the level of an issue, question your expectations. Are they useful? Are they realistic and aligned with your priorities.

To manage your caregiving expectations, it can help to prioritize your caregiving issues. Apportion the amount of energy you give to each based on its priority. Try this little exercise each time you find yourself girding your loins for battle. First, before doing anything, ask yourself, Is this issue appropriately mine to handle? It can be easy to take over other people’s business without thinking twice.

Then, make a Caregiving Priorities list. It might include the health of your elder, the well-being of your family, or your own sanity. Bottom line stuff. Now, with your priorities in mind, rate the impending issue on a scale with “Critical” at one end, and “No Big Deal” at the other. How much energy does your current issue deserve in the greater caregiving scheme of things?

You can adjust your expectations or change your priorities at any point. Then, when you recognize a legitimately critical issue, you take your stand.

The way you tackle issues determines your success. First, be able to simply articulate your goal and your terms of satisfaction; Know that you probably don’t know all the details; Speak respectfully and negotiate whenever possible. If the issue is unresolvable, acknowledge it, adjust your priorities, and move on. Unresolved issues are energy sinks. Don’t let them hang around.
When you save your energy for resolvable important issues, more of you is left available
for your elder, your family, and yourself.