A Caregiver's Affirmation

 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.


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A TIME TO SOW

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.
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Learning from Anger

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.
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Eden Alternative Transforming Long Term Care

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/

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How to Get Help

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.
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Embracing the Moment

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

(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.
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Caregiving: Bootcamp for Extreme Self-care

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.
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Culture Change in Nursing Homes

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/
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Selftalk - Generating Your Caregiving Experience

"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.
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Musings on Balance, Imbalance and Change

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.
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Siblings - Acceptance As Damage Control

"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.
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Choosing Your Battles

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.

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