Hurricane Sandy reminded many, including me, that we don’t have control over everything that happens in life.  We don’t always have the power to keep bad things from happening.  We like to think we do, but life shows us otherwise.  I was also reminded of how we can choose to look at what’s possible rather than focus on what seems impossible.  To decide to take the best possible care of ourselves.  To be resilient.  Being a resilient person starts with believing in your own potential to face a challenge.  If you’ve faced up to a medical diagnosis, you know what I mean here.  That means focusing not on your powerlessness, in whatever form that takes, but where you do have power, and taking action. 

Life never stays the same.  Sandy reminded me of how comfortable I am in my day-to-day routine.  And how a stressful event can be an opportunity to look at life in a new way.   Refusing to accept uncertainty and change is setting up a battle that is not only unwinnable but unnecessary.  Accepting that life is about change helps you to more clearly see what you do have control over, and to take action. 

I am probably preaching to the choir here, but this is my lesson from Sandy.  Recognize your own ability to solve problems.  Get connected with your support network.  Stay optimistic.  Resilience is power.  And the real power is in your hands! 

One of the lessons that we learn from illness is that life is always changing.  Yet, humans seem to be hard-wired to avoid change.  But because life keeps moving, nothing stays the same forever.  In other words, we aren’t in control of everything that occurs in our lives, even if we think we should be.  Fighting change is like fighting against yourself, and your own potential for growth.  So give up the battle and go with the flow.  Focus on what you do have control over.  Beginning with taking the best possible care of yourself and the people you love.  

Happy Labor Day!  Whether you read these words today or whether you read them some time in the near future... To me, the point of Labor Day is to remind yourself to take a break from all the hard work that you do in life, as well as to give yourself a pat on the back for doing all that hard work.  For caregivers, this has a special meaning.  Now, I understand that your Labor Day may mean a day off from work to do more caregiving. Can you give yourself a little break today?  Along with that pat on the back?  Anybody else that can help you out? 

Some help in getting through the day

Practice compassion.  If you are walking around with a lot of self-blame, chances are you are also directing this blame toward others.  Show some compassion toward yourself.  You’re human.  And other people are, too.  If you can show yourself a lot of self-love, then it becomes easier to let other people be who they are.  

Commit to staying healthy.  Paying attention to your self-care – including diet and exercise.  If you have anything going on in your life that you feel might place you at risk emotionally or physically, consider seeking help from a professional.

Face Forward.  Each and every day, ask yourself: What can I do to make this the best day possible?  Spend time every day showing compassion to yourself and others.  Do something that feeds your mind, your soul, contributes to your physical well-being, or benefits those around you. 

Support

I had a call from someone recently who wanted to join a support group for caregivers.  Unfortunately, she had a time conflict with my group.

But what's important is what I heard in her voice.  She described herself as a middle-aged professional who is self-sufficient, independent, doesn't shy away from challenges.  Or at least, hasn't in the past.  But this was not the voice of a person who feels confident and in-charge.  It was the voice of someone feeling scared, lost, confused.  She went on to say that a sister had been diagnosed with a life-threatening condition and was suddenly needing a lot of support -- physically, emotionally and, at some point, possibly financially.

She had essentially moved from shock to fear, sadness, and anger that her sister's life would never be the same, and her's wouldn't be either.

"I need a lot of help," she said.  "I need support myself."

Admitting that you can't do it on your own is a sign of great bravery.  It is an important first step.  Don't go through this alone!

Patience

Patience.  Of the many things that caregivers need more of, it is patience.  You may feel like your reserve of patience has run out, but you’re doing everything you can to hide it.  You may feel like your reserve is dangerously low, and will soon run out.  Maybe even tomorrow.  It’s hard to be there, day in and day out, over and over, and not have those days when you feel like throwing in the towel, even though you know you can’t and you know you won’t.  Somehow you find it.  It’s only human to feel like you can’t do it much longer, and to just want to holler.  Denying how you feel only leaves you feeling even more drained.  And more impatient.  So take some time for yourself.  Let yourself sit with what a challenge getting through the day can be.  Have a talk with somebody who can listen without judgment while you talk about how what a thankless job caregiving can be, how annoyed and frustrated you feel, how you wish this was somebody else’s job.  Don’t hold back.  Maybe even consider how you might get some help, even if only to give yourself some small breaks here and there to regroup and get back to your center.  Patience begins with yourself.  You are human.  Show yourself some patience.  

Weight of the world

I got up early a couple of weeks ago to reach out into the hallway and grab my newspaper. A couple across the hall, about my age, live in another state but travel back and forth to NYC for her cancer treatment. She has been through a lot, many ups and downs, many new treatments. She is a living legend. It was about 6 a.m. The husband was standing in the hallway, with his back to me, apparently waiting for his wife. He had a couple of suitcases. I assumed they must be leaving. Here's what I saw. I saw a man who is world weary, who is carrying a lot of weight on his shoulders, who is doing everything he can to stay optimistic, to take life one day at a time. I saw a man whose shoulders were a little sloped, a very tired man. I thought about what I should say but everything I thought about saying would have been just words. He must have heard me open my door. And I wondered if maybe he wasn't wanting to hear any words that morning. He was getting on with his life. One day at a time. So I left him alone, but sat down with my coffee, and breathed with him, and shared his pain.

Recognize the moments of joy that each day brings.

True happiness doesn’t hit like a lightning bolt or a million-dollar lottery jackpot. Life is full of smaller pleasures, like enjoying beautiful weather, checking in with someone you care about, or taking time to do something you enjoy. Being conscious of life’s little joys can take you a long way toward feeling happier. Do you find yourself constantly putting a negative spin on life and then reminding yourself how hard life is? Take action to change your self-talk by countering the negatives with positive examples of the joy of making sure your loved one is having his/her needs met. And pat yourself on the back for stepping up to the plate and meeting the challenge.

Watch your language. You are you. You are not your emotions.

Are you sad, anxious, angry… or are you feeling that way? Caregiving has a way of bringing up all kinds of emotions.

I was thinking today about how easy it is to identify with our emotions, not only to feel them, but to let them take over our lives until we are all about our emotions and our emotions are all about us. And identifying with our emotions begins with the words we use when talking about how we feel.

When I first started studying Spanish in high school, one aspect of the Spanish language that gave me problems was how emotions like sadness and anxiety are expressed.

In English, we say, “I am sad” or “I am anxious.”

But in Spanish, feelings are expressed as: “I have sadness” or “I have anxiety.”

It took awhile to make that adjustment, I have to say. One thing that helped me was to think of the feeling, like sadness or anxiety, as something I might be holding in my hands. In other words, not “I am,” which sounds like you begin and end with your feelings. But “I have,” which means sounds like while you have the emotion right now, you might also be able to put it someplace else.

Try replacing the “I am” with the “I have.” “I am” sounds pretty permanent. “I have” sound like, well, maybe it’s also possible not to have.

And then, open up to the possibility that you have options. That your feelings don’t have to be all you are about. That it is possible to do something about your feelings. I am not trying to say that you can simply decide not to feel the way that you feel and make it go away. That’s just denial, and it’s not realistic. But I am encouraging you to open yourself up to the possibility that you don’t have to feel the way that you feel.

You can have your feelings without being your feelings. You aren’t your depression. You aren’t your anxiety. They are not your true self.

You are you. And that’s a lot more than depression or anxiety.

Lonely in a crowd.

I was thinking today about what a lonely job caregiving can be. In fact, caregiving can feel like the loneliest job in the world. Sure, you are with your loved one. But when you're giving and giving, and not getting your own emotional needs met, or feeling isolated, then it is only human nature to feel lonely. You and me against the world is beautiful in concept but not an easy way to live. Over time, loneliness can contribute to a feeling of helplessness, and feelings of depression. Feeling lonely is a sign that you need to get more emotional support. Find a way to get around people. Spend some time walking around a shopping mall or sitting in a coffee shop. Call a friend or family member and talk. Don't go through this alone.

New Year. Now What?

So here we are at the end of 2011. Yes, it’s that time of year when we’re hit with those “best of the year” and “worst of the year” lists. I wouldn’t be surprised if you were doing your own year-end review, thinking about what happened and what didn’t happen, what you accomplished and what you didn’t accomplish.

And then, I will ask that question one more time, but change the emphasis. How do you THINK you did? I’m emphasizing the word “think” because that’s where you can get yourself in trouble when you’re doing your annual review.

Focus on the bigger picture. Life is an ongoing process of growing, developing, learning, caring and being cared for. An ebb and flow. Life may seem to go better – fewer challenges, more successes – some years, and not so great other years. But the point is that your life isn’t about only one year, but the years that you have lived, and the years that you have ahead of you. So don’t lose your perspective.

Give in to the possibility of change. And while you’re looking at the bigger picture, ask yourself: Is 2012 a year for new directions? The only thing we can really count on is that things change. You’ve already seen it in your own life, with the changes that your diagnosis introduced. The more flexible you can be – ready, willing, and able to shift your priorities, and change your routine – makes it easier to live with uncertainty. Open yourself up to the unexpected.


Make “taking better care of myself” the top priority for 2012. Think about what you need to do to strengthen your foundation. More attention to your physical well-being with an exercise plan? Learning how to cope better with stress? Picking up a new hobby? Spending more time with friends and family? Building a stronger support network? Assess your strengths, and where you need to add more muscle, and commit to doing what you need to do to get bulked up.

Celebrate 2011 by celebrating yourself! You’ve made it through another year. Life is good. And 2012 is a year of even more opportunity for personal growth.

Happy New Year! Make 2012 the best year yet… at least until 2013!

Your middle name isn't God.

Being a caregiver, and all the uncertainty around it, can leave you feeling out of control. Scary decisions to be made. Treatments with unfamiliar side effects. Emotions all over the place. And when humans feel out of control, they begin to fear what we all fear the most: helplessness. Some days you want to micromanage your loved one's life, other days you may want to run for the hills. But consider this: we are not in control of what happens in our lives. Life happens as it happens. Trying to have control over everything is trying to play God, and that's a lose-lose proposition. So, unless your middle name is God, can you give yourself a break? Take a look at what you can control and stop trying to control the uncontrollable. Take life one day at a time. THIS day. Not tomorrow. You don't control that either. Take a deep breath and relax. Live in the moment. Take care of yourself.

Looking ahead

I met a wonderful couple over the weekend. These are two people who clearly love each other, who enjoy each other's company, who enjoy their life together. They have a beautiful home, wonderful family and friends. So joyful, so content. And then afterwards I was told that he has a serious illness -- very serious -- that will require extensive treatment that may, or may not, be effective. They know this. If the had told me what was happening in their lives, what could I have said? I guess I would have honored them for living in the moment, for enjoying that day, for being present with each other and with the people that they invited into their home. And I would have wanted to make myself available to them in any way possible, to be present with them. And I would have wanted to somehow make the reality of their lives go away, but I know I couldn't. I was aware of the power of being mindful, of living each day in the present, each moment as if it might be the last. But I was also aware of the feeling of helplessness.

Are you happy?

Happy? That may be a word that you don't think about very often. Or if you do, it may only be long enough to reminisce about past happiness, or maybe to wonder if it is even possible to be happy at this point in your life.

The challenges of helping a loved one facing illness can feel especially hard to face during certain times of the year like upcoming holidays when so many of the people around us appear to be living it up, at least on the surface. But if you’re dealing with medication regimens, diet limitations, mobility challenges, symptoms, side effects… all the summer pressures to go-go-run-run can leave you feeling that you spent life sitting on the sidelines or, on the other hand, tried to keep up and chasing your own tail until you got tired of running.

Happy? What are you, crazy?

Here is an article on my Website that talks more about happiness. http://www.justgotdiagnosed.com/are-you-happy-yet-here-are-some-ideas-get-started

Real happiness starts with your own attitude and your expectations -- or not having expectations. Not judging yourself. Giving into the moment, and seeing what's possible, the joy in each moment. And that means that we all have an equal opportunity to find and grab onto happiness, regardless of the challenges we might be facing.

Get lost!

Once in awhile, preferably on a regular basis, caregivers need to some stress relief. One of the best ways to deal with stress is to get lost. That is, to get lost inside of something that you enjoy doing.

Doing something you love can be like escaping into another world where the worries and the frustrations of caregiving can be put on the shelf, at least temporarily, while you lose track of time and space.

So, you might be asking, just how does one get lost? I would answer that question with a question: How do YOU get lost?

Think back to the last time you escaped into that other world. What were you doing? Enjoying a favorite craft, like knitting? Listening to music? Dancing? Reading a book? Playing with children? Doing some house or yardwork?

What’s happening during these moments of escape is that you essentially distract yourself from the pressures of the moment. You give yourself a “time out” and allow your mind and your emotions to rest. The focus is on you and you alone. Reading can help because it engages your mind and literally carries you into another world for awhile (caution: choose a book that is going to entertain or inspire you). Activities like crafts or housework keep your brain busy through soothing, repetitive movements. Playing with children or volunteering can give you a feeling of connectedness with something outside of yourself.

Any of these activities can give you a temporary refuge and be a way to heal you emotionally while you also reduce stress. And also keep in mind that, even while you are focused in another direction, your mind is working undercover. Have you ever had an inspiration while taking a shower or doing housework? When you distract yourself from your problems, take the pressure off yourself – and take your eye off the ball – you are also giving your brain a chance to work on its own. This can give your brain access to your strengths, and to the possibilities. Who knows, you might return to reality feeling renewed, refreshed, and with a new perspective.

You might be thinking that the obvious solution is TV, but it is not necessarily the best one. TV is pushed at you, no focus on your part is required. What should be helping you to relax by giving you a break from the pressures of life may be stimulating more thinking, more worrying, more frustration. And so much of TV isn’t exactly what I would call feeding your soul. Surfing the Internet also falls into this category.

How are you going to get lost? What takes you out of this world, relaxes you, centers you, gives you a feeling of accomplishment, gives you pleasure? If you aren’t sure, it might be time to do some exploring. Try something you have thought about you haven’t yet taken the step to pursue. Experiment. You will know that you have found it when you look at your watch and say, “wow, I didn’t realize this much time had gone by.”

Need a break from the stress? Get lost!!!

Remind yourself that you are a work in progress.

Looking for another way to stress yourself out?

How about telling yourself what you should have done, said, felt, accomplished, been acknowledged for, etc. All those “shoulds” can turn into a big old club. And if you use that club to hit yourself over the head a few times, you can end up with stress, and probably a headache to go along with it.

Ready to put the club away but not sure how to do it?

You can start by making the decision to allow yourself to be human. That means not always being perfect. Making a few mistakes, a few misjudgments. Pushing too hard, or being a little lazy. Being flat-footed once in awhile and stepping on somebody’s toes.

That’s all part of being human. We learn from our miss-steps. We try to do better next time. Sometimes we succeed. Sometimes we have to keep practicing. Two steps forward, one or two steps back.

Lighten up. Shake your head at yourself and smile. Resolve to keep trying.

Remind yourself that you are work in progress. You may never “arrive,” whatever that means. But it’s all about doing the best you can on this journey of life.

Sign up for my newsletter

I am now publishing a monthly newsletter. I you are interested in signing up, all you have to do is go to my home page at www.JustGotDiagnosed.com and sign up. The newsletter will include a feature article, a resource of the month, and information for caregivers.

Blaming the victim

It’s hard not to feel helpless when the person you are caring for has bad days. You don't know what to do and so you feel scared, as any human being would. But as a result, you may unintentionally slip into to “blaming the victim.”

You may do this by getting mad at your loved one for not "doing something" to avoid the bad days, as if this was possible. Or you may want them to "fake it til you make it" and pretend they aren't feeling the way they are feeling. Or you want to micro-manage them by getting on top of their compliance with medications. Clearly, none of this is helpful to them and, instead, leaves them feeling unsupported at a time when they need your support.

I am creating a monthly online newsletter through my Website, www.JustGotDiagnosed.com. If you interested in receiving it, please sign up by using the sign-in box on the home page of my Website.

Have you sat down to talk with them about how they feel? Have they had a chance to educate you on what you can do to help them — even if it means backing off — when they are having a bad day? You may have tried this already, but it might help to sit down and get some education.

And while you are at it, this might be a good time to let the person you care for know how they can better help you to help them. Making an agreement to be honest with each other is a great start.

Give your loved one permission to say: “don't worry, I will get through this, and I you will be the first person I will come to if I need help." This might be a good start.

Off to the beach.

Need to run away to gather your thoughts, calm your jangled nerves, and get back to your center? Sounds like time for a little break. No, you don’t have to take the nearest flight to Miami. No need to do all that traveling or wait that long. You can do it right now.

Take a short break from the action. Five minutes if that’s all you have. Find a quieter place where you can be alone. Even the bathroom will do.

Sit in a comfortable position. Take a few slow, deep breaths to begin to calm yourself down. Close your eyes. And then visualize a calm place where you feel relaxed, safe, and at peace with yourself and the world. Like the beach. Or if you are not a beach person, some other place where you feel this way, or your back yard, a park after it’s been snowing, or your grandmother’s kitchen.

Imagine that you have been dropped into this calm place to take a break. What are the smells? The physical sensations? Any happy memories?

Visualize yourself enjoying your surroundings, relaxed, peaceful, renewed. And compassion fatigue avoided for another day.

When you are back to your center, you’re also ready to head back into the action, that much better prepared to maintain your cool.

Hospitals and helplessness.

After suffering too long with a hand infection, I finally reported to an emergency room last week, and was immediately admitted to the hospital. I was quickly reminded of something that I tell my clients: being in a hospital is like entering into another culture, with different clothing, rules, language. You ae the patient and you are the outsider. It has been a long time since I felt this helpless. You wait, you worry, you put up with a lot of discomfort. Things happen on someone else's schedule. You have minimal choice about what you eat, if any. The days pass slowly, at night you find yourself awakened virtually every hour. What was especially interesting to me was observing the caregivers. They often looked like walking wounded, worried expressions, clearly exhausted. I had various roommates while I was there. Family members came to visit, sat while their loved one complained, or cried. They gently asked nurses to give their loved one a little extra assistance, clearly afraid to rock the boat by appearing to be too demanding. And patients told their caregivers to go home and get some rest, feeling their own guilt. The caregiver's burden. I see it my clients, and I saw it my own mirror when I was taking care of my mom. As I was going for my occassional strolls, hand in hand with my IV rack, I saw caregivers standing in the hallways, taking a breather, making a quick phone call to give a status report, or to reconnect with their own lives for a minute or two. I smiled at them, and sometimes received a sad smile in return. Life on life's terms.