Caring and Giving

A Loss of Words

2012-02-11T06:37:00.000-08:00

I just learned that Jeffrey Zaslow died yesterday in a car accident. Zaslow is the author of two books that mean a lot to me: The Last Lecture, a book given to me by my daughter as a graduation gift, and Gabby, the story of Gabby Giffords and Mark Kelly, and her triumph over tragedy.

Zaslow worked at the Wall Street Journal, and is said to have been an inspirational man. I wish I had known him. In his own way--by writing for both Randy Pausch and Gabby Giffords--he was a caregiver. He shaped the words they needed to say, so millions of readers would understand, not only their illness and injury, but the spirit that carried them through it.

In the case of Randy Pausch, Zaslow wrote the story that made the book an overnight success, and it's easy to see that Randy and Jeffrey shared many of the virtues illustrated in the book: "Earnest is better than hip," and "Enable the dreams of others."

It's such a loss to society when someone like Zaslow dies suddenly and prematurely. What would have been the next great book he would write? How many more people might he have touched? All we can do is honor the lessons left behind, emulate his great work, and pay it forward in a way that is uniquely our own. Thank you for teaching us so much, Mr. Zaslow.

Sleep Soothes

2012-01-22T03:46:00.000-08:00

I just read an article worth sharing in Science Daily:

Dreaming Takes the Sting out of Painful Memories

The article illustrates the benefits of dreaming in people with post-traumatic stress. It explains how dreaming allows a person to reexperience a stressful event without the interference of stress neurochemicals. This effect takes the edge off trauma, and we wake up better able to cope.

I love that there is now science to prove how very important sleep is to caregivers and others who experience PTSD. Happy snoozing and sweet dreams!

The Psychological Crib

2012-01-11T14:02:00.000-08:00

Yesterday, a side to our story was told in an article in the New York Times, that is expressed in my book, but in a different way. (http://www.nytimes.com/2012/01/10/health/when-injuries-to-the-brain-tear-at-hearts.html).

With a scientific slant, the article exposed the challenges psychologists face when counseling couples with marriage problems after one person has changed drastically following a devastating injury.

After a brain injury, roles flip. The caregiver usually becomes a “guardian” rather than a partner, at least for some period of time after the injury. The injured person is suddenly thrust into a world where he (or she) is not only physically limited, but placed in a psychological crib, and constantly reminded that he can no longer do the things he once did with ease—eat, walk, drive a car or climb stairs alone. And then he's told he no longer makes sense, he doesn't remember, and he's confabulating (creating false memories). It’s easy for couples to become locked in disagreements or to feel resentful of each other. It’s suddenly hard work to get along—hard not to miss the easy relationship that once felt so comfortable. As the injured person heals, the caregiver must pull back, stop hovering, and allow the injured person to take chances in a world that suddenly feels like a dangerous place.

It’s not only the injured person that changes in an accident—quite often, the caregiver changes. Sleeplessness, anxiety, frustration, and fear can alter a personality and strain relationships in the process.

All of this was conveyed in the Times article. Counseling is helpful, but what tools can counselors use to help couples going though this? For us, communication was important. Constantly putting ourselves in each other’s shoes helped. We had to remind each other that we were in this together, we both wanted to stay married, we both wanted to reach a connecting point, a place of mutual respect, understanding, and love. I’m so glad we did.

Hugh and I are more tightly bound now than ever before, and even though letting down the guardrail of the psychological crib (or as my husband would call it: stopping the nagging) caused a good deal of anxiety as I watched him conquer feat after feat, anxiety can be overcome, but the loss of a soul mate, never.

Starting off with a Bang

2012-01-09T11:28:00.000-08:00

It's January 9th already! I had a great time talking to the many people who showed up at the VCU Larrick Center to speak to our senators and delegates about preserving funds for brain injury services and many other much needed mental health services. I hope these funds stay in place.

I'm starting the new year off with a renewed mission: to sell my book and continue spreading the word about how important immediate and ongoing treatment is for brain injury patients and their families. Ongoing quality rehabilitation is the best way to optimize each person's healing potential. Some will return to work. Many will formulate a fulfilling life plan. Support and treatment is crucial in the early months of a brain injury, and the more the public is aware of the consequences of brain injury, the more people will understand how treatment can lead to productive lives and cohesive, stable families.

Remember, a brain injury can happen to anyone, at any time. We are all vulnerable. A slip on the sidewalk, a knock on the head in a football game, an injury from a fall or a car accident, or a sudden stroke can change the rest of your life. I was recently asked, "Aren't you tired of talking about this subject?"

The answer I gave was a resounding, "No." It's an important subject with an evolving science. Big strides have been made in saving people with brain injuries. Now it's time to make sure those people rehabilitate to a life worth living after being saved.

You Can Make a Difference!

2011-12-31T09:41:00.000-08:00

There are many ways one can acquire a brain injury. In 2011 we heard about Gabby Gifford’s traumatic brain injury from a gunshot wound to the head, numerous TBI’s acquired in the wars in Iraq and Afghanistan, and brain injuries sustained as a result of domestic abuse, car accidents, bicycle accidents, falls, and in sports ranging from football to hockey--not to mention strokes.

A brain injury can happen to any one of us or those we love. We are all vulnerable.

The Virginia General Assembly is seeking a nearly $78,000 cut to brain injury services. These services are essential to families all over Virginia.

Here is a plea from the Brain Injury Association of Virginia. I hope you will be able to help in any way possible and pass this along.

“Regional budget hearings are scheduled for next week; please consider attending and providing a 3 minute plea for help. Speak about what services you are receiving and why they are important and why more are needed. Speak about the services you are unable to receive because of wait lists or because there are no services where you live. Speak about how much this $600,000 is needed to fund supports and services for people with brain injury. If you plan to attend, you should arrive 1-2 hours early; you have to sign up to speak and there’s usually a line…and the earlier you get a chance to tell your story, the better.”

The schedule for the meetings is:

THURSDAY, JANUARY 5, 2012 (Hearing begins at 10:00 a.m.)

- Big Stone Gap – Mountain Empire Community College, Philip Taylor Hall, Goodloe Center

FRIDAY, JANUARY 6, 2012 (Hearing begins at 10:00 a.m.)

- Fairfax County – George Mason University, Fairfax Campus, Johnson Center, Dewberry Hall

FRIDAY, JANUARY 6, 2012 (Hearings begin at 12:00 noon)

- Newport News – Christopher Newport University, Ferguson Center, Music and Theater Hall

- Lexington – Virginia Military Institute, Marshall Center for Leadership and Ethics, Hall of Valor

- Richmond – Virginia Commonwealth University, Medical College of Virginia, Larrick Student Center, 900 Turpin Street

If you are unable to attend the budget hearings in person, write a letter and tell your Delegate and Senator how you feel. You can find out who your legislators are by going to http://conview.state.va.us/whosmy.nsf/main?openform and entering your address. Send this email to your friends and family, and tell them to write to their Delegates and Senators and speak up too.

Thank you, and Happy New Year!
Visit the BIAV site to learn more

An Avalanche of Kindness

2011-12-19T06:50:00.000-08:00

I’m asked all the time why I would publish, in such great detail, the emotional story of Learning by Accident, and I always go back to my original motivation—to thank the huge community of caregivers that kept my family going. These were caregivers in the form of doctors, and therapists, surely, but they were also neighbors who stopped by with a pan of baked ziti, or an eighth grade boy with chocolate chip cookies for the girls. They were sisters and brothers calling me to listen, friends offering rides, a dentist who mowed our lawn, and a minister who remarried us in our living room. They were our ever-present parents giving all they could to keep us afloat—everyday people doing extraordinary things to help each other.

On January 1, 2012, I’ll give thanks for the health of my family with a newfound fervor. I’ll also whisper thank-you to the good people in the world, who with small acts of kindness, help others, sometimes without ever knowing it, and without expecting anything in return. Albert Einstein asked: is the universe friendly or hostile? And he said the answer to that question would determine our destiny. I believe the universe is friendly. Here’s to 2012, and making kindness our measure of success for the coming year.

Caregiving around the Holidays

2011-11-30T13:04:00.000-08:00

Here are a few tips for making the season bright even when you are more than overwhelmed with life minus the bustle of the holidays season.

First, breathe, and remember the spiritual event that sparked the holiday you celebrate. This will ground you as you create a plan that works for everyone, including yourself!

Keep meals and gifts simple but festive. Focus on crafts, activities, holiday music, movies, and spending time together. You might try reading short holiday stories aloud to your loved one, or listening to a book on tape together for an hour a day.

Involve your loved one in decorating and remember past holidays together.

Carry on an old tradition or start a new one. Set a small formal table in the bedroom with an electric candle. Who says dinner has to be in a dining room.

Be flexible. The less you worry about superficial things like gifts, perfect dinners, or a spotless house, the more fun you will experience.

Focus on loving the person in your care. This is a special time of year, one of reflection, and sometimes of great pain or personal loss. But remember, it's true, that in giving, you receive. And we all have the capability of giving a kind word, a soft touch, and a heartfelt smile. So open your arms and let it all in--the great meaning of the season, and feel blessed, no matter what your circumstances.

Thanksgiving

2011-11-21T14:33:00.000-08:00

Thanksgiving can be a challenging time for caregivers and families going through transitions.
When families are scattered and some members have special needs that limit travel, many families decide to spend the holiday apart. This Thanksgiving will be an especially quiet one at our house. Both Anna and Mary are far enough away and have work demands that make it difficult to come home, so we will have four adults around our table for the first time in 23 years. I'm brainstorming on how to make this day more festive. Maybe we'll set up the Christmas tree and trim it after our turkey dinner. That way we'll get our holiday decorating off to a good start and Grandma and Grandpa can help hang ornaments. I'm sure we'll hear a few stories about some of our passed down heirlooms. I'm thinking a mini tree-lighting ceremony may be just the thing to keep our spirits up; it will keep us looking ahead to the holiday when we'll have more of a full house. In any event, we'll all give thanks for each other, for the love we share, for our good health, and for the family members who once shared our table, but are no longer with us. On this holiday of reflection and introspection, we wish all of our family and friends a fullness of heart equal to that of their bellies.

Living to the End

2011-11-14T13:50:00.000-08:00

In Learning by Accident, I cover the period in my life from April 2002 – 2004 in great detail. What follows afterward in the book is the epilogue, where I simply show a day in the life as I experience it now, only the ordinary has become extraordinary, and any crisis-free day is a glorious gift to savor.

I’ve learned so much through caregiving. Before Hugh’s accident, I was stuck in the doldrums. I held myself back for a variety of reasons, making excuses for why I couldn’t go back to school, grow my business, or take a new exciting job. After Hugh’s recovery, I felt energized to use my time wisely. And after the passing of both my mother and father, I learned even more about my own behavior, and why I sometimes didn’t make the most of each day.

Erich Lindemann writes:

“If you can begin to see death as an invisible, but friendly, companion on your life’s journey, gently reminding you not to wait till tomorrow to do what you mean to do—then you can learn to live your life rather than simply pass through it.”

My mother remained patient and engaged with people through every hour she spent in hospice until she died. She didn’t fear death; she used her acceptance of it to make sure her life was lived fully in the moment. And even though she could no longer do many things, she could still be a person that others wanted to be around, and she was. People flocked to her for the peace and great love she radiated. Live the life you are meant to live. Don’t wait till tomorrow to begin.

Slowing Down

2011-11-05T05:18:00.000-07:00

How do you deal with life when you feel like the disconnected period below a huge question mark? You're apart, hovering in the unknown, about to fall but you don’t; you stay put—floating in the middle of nowhere, frantic, yet unable to get anything done.

An inevitable part of caregiving is feeling yourself tugged by an emotional rope all the time. “I should be doing this, but I’m here doing my job—I should spend time with her, but I feel so depleted right now.” First of all, it’s normal to feel this way. Second, you can’t be in two places at once. Third, make a promise to yourself: when you are with your loved one in your caregiving role, you will be there joyfully, and your loved one will feel it. Number 3 is the most important, and you cannot achieve that level of caregiving unless you are healthy and recharged yourself.

Through my heavy caregiving years, I kept a stack of books on a table with a candle. When I felt really stressed, I reached for one of those books. They included: The Power of Now, The Joy of Laziness, and several other books with soothing, yet powerful messages that kept me grounded and calm. The Joy of Laziness, by Peter Axt, and Michaela Axt-Gadermann, proclaims, “Life is better slower.” I found this to be so true when caregiving. On the days I rushed around frantically, everyone around me sensed my nervousness and anxiety. But when I calmed myself down, the whole tempo of the house slowed down as well. Everyone could breathe easier, and we all had a better day.

When I was simply too tired or nerve-jangled to read, I lit the candle and stared at the flame. Somehow, it hypnotized me. I didn’t have to meditate or chant, or think, just watch the flame. A few minutes of zoning out straightened me out. (Just remember to blow out the candle before you run back upstairs to help someone!) And keep the peace, baby!

Working Together

2011-11-02T12:30:00.000-07:00

Who would have thought, nearly ten years ago, as Hugh slept comatose in the ICU, that one day we would stand in front of a graduate class of 44 occupational therapy students talking about our experience with traumatic brain injury. This morning, at the request of an OT Professor at Virginia Commonwealth University, we found ourselves at the podium remembering, sharing stories, and even joking with a group of medical students ready to launch a career helping survivors of open and closed head brain injuries.

When Hugh completed his talk by saying,"...and now we'll take your questions. And I want you to understand, we will answer ANY question...no matter how down and dirty." The group broke out in laughter.

Question: "Hugh, did you ever feel upset at your wife because she could do things and you couldn't?" Pointing to me, he said, "Oh, you mean that control freak? Yes, of course!" I had to nod in agreement, while trying not to turn red in the face. I always was a control freak, a trait that swelled by the day after Hugh's injury. "That's natural," he added. "But Rosemary was good natured. She essentially brought up three adolescents after my injury"(more laughter).

As much as the writing of Learning by Accident was my therapy, the publishing of this book has bonded me with Hugh in a way that might never have happened, and provided us with meaningful work we can perform together. It's a testament to opening yourself up to the world, and being who you are. Ask yourself the down and dirty questions you really want to know--stop hiding and find your answers. They are there if you look hard enough.

Encouragement

2011-10-26T13:58:00.000-07:00

When someone showers me with meaningful words, it is a gift beyond the greatest material gift in the world, because I can tuck these words in a pocket in my mind and pull them out anytime I need direction, reinforcement or strength. Sometimes they come in the form of a song lyric or poem, and sometimes they arrive as a single dynamic sentiment that will live inside me, and fortify me forever. It’s amazing—the difference a few words can make.

I’ll be forever grateful to Sally Reed who reached out to me when Hugh was nearing the end of his rope after many months of rehabilitation. Here’s an excerpt from Learning by Accident:

When I email the Lance Armstrong Foundation, an organization devoted to cancer victims and their families, I reach a woman named Sally, a cancer survivor herself. We never meet, and yet we email back and forth and she reaches out to me in a profound way. I ask her in desperation, “How can I help my husband? I feel so useless. What can I do to make a difference?”

She writes back: “Remind him that you love him. Remind him of his past. Remind him that you love him. Remind him of your history with each other. Remind him of his daughters’ birthdays, your birthday, anniversary, and remind him that you love him. Talk to him, talk to him, talk to him, and remind him.”

This is some of the simplest but most useful advice I have ever received. Thank you, Sally.

True Friendship is Timeless

2011-10-20T08:36:00.000-07:00

I traveled 21 years back in time this past weekend to a place I lived before I lived in Richmond, to the Green Mountains of Vermont, and they are now just as pristine and as unchanged as they have been for hundreds of years. Vermont is vastly unique in its timelessness. While there are pockets of “civilization” (neighborhoods, small cities, and busy streets), you can still look into the distance from many vantage points—as far as the eye can see—and spy only a dot or two of some old farmhouse peeking out between the overgrowth of foliage everywhere. I stayed with my friend, Terry, at her new home in Georgia, Vermont. Old friends and coworkers showed up for a fun book party at her house on Saturday night. Everyone was excited and friendly; none of the usual chiding about not staying in touch enough. While staring into familiar faces from over twenty years ago, it almost felt as if no time had passed. Sincere friendship is timeless, like the rolling landscape of the mountains. Once securely settled in the heart, it is always there to sustain us.

Unexpected Gifts Bearing Secrets

2011-10-10T06:15:00.000-07:00

While Hugh and I sat reading in our small condo in the outer banks one afternoon, we heard a knock at the door. Outside, stood an acquaintance we had met only weeks before, bearing a lovely gift and card. She asked to speak to me.

She told me she had heard about my book when I handed a few bookmarks out after Hurricane Irene and she bought my book immediately. "I read the entire book very quickly, from his perspective," she said, pointing to Hugh. "Thank-you for writing this book so others understand that people with brain injury may look perfectly fine but still be struggling with many issues." Her eyes filled up.

Shifting nervously from leg to leg, she poured out her own story, saying that Learning by Accident filled in all the blanks of her life for her. "Here, sit down," I said. The three of us talked for nearly two hours. This woman's brain injury occurred forty years ago. Back then, there was little done except to watch a person in a coma and send her home when she woke up. No rehab. No therapy. No grieving. Get on with life. She did just that, and has lived a very happy and fulfilling life, but no one told her about the blank period she suffered in between crashing and remembering, and for her, it was a very long blank period. "No one talked about such things back then," she said. "I cried in my pillow, and I moved on. Your book means everything to me."

After she left, Hugh and I looked at the gift she gave us, a lovely wreath for our condo. But the real gift she gave us was her story. The book unwrapped it, she presented it, and we received it, allowing her to come full circle.

Slippery Memories

2011-10-02T05:32:00.000-07:00

At age 55, I'm starting to worry when I forget my keys, or when I forget why I came upstairs. But since I've learned that worrying doesn't solve anything, I've been investigating ways to strengthen my own neural connections and make my brain sharper. What I've discovered is this: that doing more of the things I love won't really help (in my case, reading and researching) because those neural connections are already strongly embedded in the pavement of my memory highway. I need to learn new material and reinforce it. I need Math. I need to learn a new language, or play Sudoko. The trouble is, I don't enjoy these activities at all. This left me with a dilemma, until I stumbled on the website, Lumosity.com.

Lumosity is a brain training system that measures your brain power, brain processing speed, and reaction time all while you play games on the computer. The more you play, the stronger your neural connections become, and you can see your own progress. It hooked me right away. Of course, after my free trial, I had to pay for this, but I feel the price is reasonable, and the benefit it provides is apparent in my daily life. This is not a commercial or endorsement, but a suggestion to anyone who feels their mental stamina slipping as they age: take action. The earlier the better. Work your brain in a way you have not worked it before, and add more mentally sharp years to your life.

Reflecting

2011-09-28T06:56:00.000-07:00

Last night, while standing on the steps of the altar in the church that I've been a member of for the past twenty-one years, I looked out and saw the most beautiful faces radiating back at me as I spoke about the challenges and gifts in caregiving. Most of the people listening had, at some point, been caregivers, and many had been cared for. Mary, our minister, had just spent the day traveling between two very sick parishioners. She was exhausted, but there she sat, listening, smiling at me, and reassuring me with her eyes. Several women I have known for over a decade nodded their heads as I spoke. Paul, my fellow Sunday School teacher and dear friend, sat intently listening.

There's a feeling I tried to capture in my book, and it's nearly impossible to render in words, but I was graced with that feeling once again as I spoke last night. I wrote a passage once to express this particular feeling. Here is a small part of it:

The gift of the human spirit is its ability to connect to others--a desire to help, a prayer, a positive common energy that combines to form a physical thing--a force that becomes a pair of strong, invisible arms lifting you above the pain. Messages sent verbally, in writing, through acts of kindness, in thoughtful glances, and exchanged looks of fervent hope, create a clairvoyant healing energy. It is real, it is powerful, and it is beautiful.

Thank you, Church of the Epiphany, for sending me and my family your prayers over the years.
They have been received.

The Challenges & Gifts of Caregiving

2011-09-24T04:39:00.000-07:00

I’ll be speaking at my church this Tuesday night on the Challenges and Gifts of Caregiving and focusing on many different issues. But the one that plagued me most as a caregiver was being too hard on myself with negative self-talk. My mind raced constantly and more often than necessary, it went to the what-ifs or the I can’ts.

Negative self-talk presents a huge problem to the caregiver and is detrimental to the person he or she cares for, because nothing positive comes out of self-doubt or self-loathing.

The parallel gift to this challenge is the opportunity
to be more self-aware. Here's how, and it always works for me:

First notice that you are engaging in negative self-talk, and then redirect it. Imagine someone you know who loves you, and imagine what they would say to you if they heard your negative self-talk: Here’s an example of the voice I hear when I say to myself, “I cant’ do this.” In this scene in Learning by Accident, Hugh was still in the ICU.

Seeing my mother on the couch in her soft flowered robe, fingers wrapped around a mug of coffee in the morning, fills me with security. As a small child, I recited her full name with fascination: Julia Margaret Mary Flaherty Healey—the longest name in the world. Reflecting on her name I ask, “Didn’t Pop’s father used to call you, “My Jewel?”

“Yes,” she says smiling. “He was such a sentimental man.”

“Mom, I hope I can handle this,” I say to her. She covers my hand with her own. “I have no doubt you can handle it, Rosemary. You just have to go day by day. It’s not going to be easy, though. Dad and I are here if you need us.”

My parents are both gone now….Pop died in 2007 and my mother passed away just last year. She wanted desperately for me to publish my book and told me to self publish it if I had to. She believed in the story and she believed in me.

So when you find yourself questioning your own goodness, ability, or limits, reflect on those who love you and the way they see you, and listen to them in your heart, and believe them.

The Challenges & Gifts of Caregiving

A Free Event Open to the Public

Tuesday, September 27, 2011

7 pm - 9 pm

Church of the Epiphany

8000 Hermitage Road

Richmond, VA 23228

National Rehabilitation Awareness Week

2011-09-17T04:55:00.000-07:00

Meet Rosemary Rawlins, author
Learning by Accident

Join us for a book reading/signing and reception to celebrate National Rehabilitation Awareness Week and the release of Rosemary’s inspirational memoir.

This is the heading of the flyer HealthSouth is advertising for my first major public event with the book, and it's heady stuff for me. Hugh and his parents will attend the HealthSouth event with me this coming Wednesday as I give my first talk and read from my book for the first time to a public audience. The place and reason for this talk could not be more important to me. HealthSouth is the hospital I chose for Hugh 33 days after he was discharged from the hospital, having travelled through the ICU, the med/surge floor, and the acute brain injury ward within a month's time. He had progressed, but he was still seriously ill, extremely impaired and barely able to perform activities of daily living with prompting.

Well planned, well-delivered, continuing rehabilitation is an absolute necessity after a brain injury. The doctor, nurses, therapists and social worker we met at HealthSouth contributed daily to Hugh's recovery, a recovery that not only helped him heal, but helped him reclaim his life.

So if you have ever visited a rehab center or hospital, take a moment this week to acknowledge and appreciate the life-changing therapist in your own story--the person or persons who, with compassion, knowledge, and a bit of athletic grit, helped you dig deep into the well of your own strength so you could return to your life in better health.

Please join me this week, if you can, and don't forget to register by phone:

Wednesday, September 21, 2011

3:30pm-6pm
Formal presentation begins at 4:15pm

HealthSouth Rehabilitation Hospital of Virginia
5700 Fitzhugh Ave Richmond, VA 23226

Books will be available for purchase at the event
RSVP to Tonya Ferguson at 804-673-4503; tonya.ferguson@healthsouth.com

First book signing - Success!

2011-09-11T13:00:00.000-07:00

I felt a shiver up my spine when I saw the store event sign for the first time with my name on it bearing a picture of my book cover that looked larger than life.

"Can I get you a drink from the cafe? Is there anything more you need?"a staff member
asked. I felt so significant, even a tiny bit important (certainly not a feeling I'm used to)-- different than myself, different than the "me" I feel like every other day--wonderfully different. Friends approached the table with huge smiles lighting their faces, prompting me to run around the table for a hug. So much excitement and so many good wishes. It's a foreign feeling, people treating me like I'm special, but a delicious one. It made me pause. I wanted to write a meaningful verse in each person's book, but my mind felt a bit fuzzy, unable to find that place where all the right words just flow. Maybe it was the rushing in and out of patrons, the background noise, or the pounding of my own heart, but many of

my signatures felt a bit generic to me. I hope each and every person that asked me to sign a book knows how very much I appreciate his or her willingness to enter my world for just a short while. Within the first hour, I sold every book Barnes and Noble had available to sell. (It wasn't that many) Luckily, I brought a few extras along, so we didn't run out. But I have to say, running out of the store's supply made my day! Thank you again, Barnes & Noble, and all you faithful readers out there!

My book in the bookstore, a beautiful sight!

2011-09-01T11:20:00.000-07:00

Add caption

A Party in the Storm

2011-08-30T05:30:00.000-07:00

After planning my book launch and rearranging my house for the event: wine bar in the kitchen, book signing nook by the big back window, my office cleared of all my own books, and every shelf lined with brand new "Learning by Accident" paperbacks artfully arranged with photos of family and friends, a hurricane hit--not the day before, and not the day after, those two days were picture perfect. Irene, as the hurricane was named, hit the exact day of my book launch with the peak of the storm scheduled to arrive at 8:00 p.m., the appointed hour of the toast. Hugh and I talked a long time about where to hold the event. Our own home finally made the most sense. Our home is the setting for most of the story, and nearly every person invited to the party is a "character" in the book. We picked the date because it was the only one available after a few publishing snafus, and we didn't want to go past Labor Day. Both of our daughters, Anna and Mary, had travel arrangements set, and took time off from work to attend. Terry, from Vermont had a flight scheduled, as did my brother John, and his family from Atlanta. My sister, Mary (she's Kate in the book) and her daughter Meg were visiting from Albany, New York. So, when the storm took a turn for the worse, we really had no choice but to go ahead with the party, and we did. We served drinks and desserts: 250 mini cupcakes, lemon cookies, assorted cheeses, fruits and nuts, dessert wines, and beer. All day my phone buzzed with text messages saying, "Sorry, we won't be able to make it in the storm." Every time Hugh walked by me, he wrapped me in a consolation hug. But Anna, Mary, and their cousin, Meg, were stoked. Meg hoped out loud that the lights would go out and we'd have to party by candlelight. When I said I was disappointed, Mary said, "Mom it will be great!" and Anna said, "Didn't you learn anything from that book you wrote? You can't control the weather. Just have fun." And so it appears the universe is not done teaching me. I had my little meltdown, but the party turned out to be a success. Twenty-five brave souls turned out to celebrate with us. At eight o'clock, Hugh made his toast to me on our staircase, and our daughters followed up the toast with these words: While everyone has to end on page 304, we're lucky to have been able to see beyond the back cover and to watch you embrace this new strength and follow your dreams." Shortly after the toast, the lights went out, but the party went on, and everyone glowed in candlelight.Cheers!

Megan, Mary, Sherita, Anna

First Book Signing on the Calendar!

2011-08-08T12:15:00.000-07:00

Here's a link to my first book signing event in early September. This will kick off a series
of exciting events I have planned in Virginia through September, and something tells me that sitting in a bookstore and signing my own book will be unlike any feeling I've ever had before.

I'd love to see you there! Consider yourself invited! Here's a link to the event:

http://store-locator.barnesandnoble.com/event/3108819

Learning by Accident is Officially Published!

2011-07-28T08:43:00.000-07:00

Click Here to order: www.outskirtspress.com/learningbyaccident

At long last, my book is on sale! What a feeling!
Learning by Accident is available for sale at barnesandnoble.com, Amazon, and in Kindle form.

I'm now busy working on announcements and booking signing events, as I hold my breath to see how the book will be received by the larger public. I often call myself a storyteller rather than a writer. I don't have an MFA, and I have not dedicated my whole life to writing, yet writing is a part of my daily joy. Any writing: a poem, essay, email, greeting card, Facebook post or note to a friend--each one is equally as gratifying and meaningful to me.

And I believe that if I demonstrate any talent at all as a writer, it is because I have read so many wonderful books by incredible authors. There is an abundance of jaw-dropping talent in the form of the written word. I'm just so happy to be a small drop in the ocean of the writing world. Here I go...

Paying it Forward

2011-07-14T12:52:00.000-07:00

In recognition of my loving family and wonderful friends who helped me when I was in need, I am donating 5% of the first year’s profits of Learning by Accident to my neighbor and friend, Dan Duggins. Dan suffered a severe stroke that left him locked in, unable to move or speak, but alert and vibrant inside with no way out. For over a year now, Dan has only been able to communicate with his eyes. His parents have selflessly tended to his every need. Before his stroke, Dan was the drummer for three bands: Hot Rod Circuit, Queen Killing Kings, and Zigmat. He is a handsome and talented rock star who is fighting to regain his active life in music.

It is my sincere hope that this donation will provide the means for Dan to continue his rehabilitation since he had no insurance when he was struck by this devastating brain injury. You can learn more about how to help Dan at the Dan Duggins Trust on Facebook. If you do not have the means to donate financially, your positive thoughts and prayers are equally as meaningful and much appreciated.

Newsflash!

2011-06-21T06:05:00.000-07:00

The cover of Learning by Accident is done!

Many thanks to Nancy Tomlinson for taking the picture of me and Hugh at S-Turns in the Outer Banks, and many thanks for the hours of work my sister, Pat, dedicated to create a print-ready cover. This has truly been a homegrown project and I couldn't be more delighted.

The book will move into the production phase now, so in four to six weeks it should be available for purchase from me, in stores, or online at Amazon and Barnes & Noble.com. Learning by Accident will also be available in ebook and Kindle forms.

Stay tuned! We'll be planning a book launch soon, and thank you for hanging in there for the long wait!

What does Caring and Giving Mean?

2011-06-13T06:13:00.000-07:00

To me, the words "caring and giving" are not only the building blocks of the word and act of caregiving, but they represent the meaning of our lives.

We spend our highest and lowest moments with those we care most deeply about, and when we give back to them, we grow. In its simplest form, caring is transformational. A reassuring smile from a loved one when you're afraid, or a hand squeeze when you feel pain, can make you feel like you can endure anything.

Caring and giving equal kindness. And in the slideshow we review again and again in our minds, all throughout our lives, it is kindness that reassures and calms us, because it represents the very core of our best selves.

Questions We Ask Ourselves

2011-06-01T09:47:00.000-07:00

Often, we look at things only one way. I’m guilty of this.

When a caregiving situation becomes a challenge, I might ask myself, "Why can't things ever go right for a change?" When I fall into this self-pity pit, I shift my thinking; there are other questions I ask myself to ease my frustration.

If you are stuck in sadness or bitterness, try asking yourself these questions:

"How else could I respond to this experience? What small action can I take right now to make things a little bit better? How have others handled my problem? What can I learn from them? What would I say to someone in my situation if I wanted to help him or her?"

The answer to this last question sometimes solves the dilemma all by itself.

Making negative sweeping statements to ourselves is damaging on so many levels. Statements like: "I'll never be able to do this," or "This will never end," entrench us in a mucky pond of misery. Once we accept that we are being swiftly carried in the current of a dynamic life, we know we'll glide over the jagged rocks and once again bask in a pool of calm, silvery water, so we'll hang in there for the ride, no matter how unsettling the journey, because the good times make the bad times worth it.

Learning by Accident

2011-05-25T07:22:00.000-07:00

The book is coming along nicely, but more slowly than I anticipated. While I turn my own work around quickly, I have no control over the production team, and I want a nearly perfect product, so I need to be patient.

Patience is a virtue I lack; and it's the single virtue my own life seems to be trying to teach me all the time. I've become an expert at counting to ten, breathing deeply, and telling myself, "Hey, it's just a book. It's just a book about your own life's work. It's just a book containing a story I've been bursting to tell for nearly ten years. That's all. It's just a book."

I promise you, it's coming. Nothing is written in stone, but THERE WILL BE A BOOK. I will let you know as soon as I have a date.

Thank you for your patience!

Thoughts on Caregiving Inspired by the Beach

2011-05-08T05:36:00.000-07:00

The one time in life that it’s good to let go is when you're dealing with a long-term medical crisis. Yes, let go. Stop hanging on to your routine; stop wishing you could go back to normal. Remember that you’re caught in a riptide, being carried out to sea, to a place you’ve never been before. Relax, or fight the current at your peril. For the current is unrelenting. Let it take you where it will—through shock, denial, and despair—because swimming against the current will exhaust you till you drown.

Instead, swim parallel to the shore, breathe deeply, and remain calm. Gaze into the blue sky, marvel at the churning of the water. Watch the memory of yourself on the distant shore—the self you used to be, before you knew how erratically and unpredictably your world could flip—and know that when you eventually step back on that shore, you will be changed, and that change won’t necessarily be all bad. You will have gained a new respect for the fleeting human life span. You will yearn to seek out meaning, and may even finally learn to love yourself and others without holding back.

Moving along

2011-04-26T11:25:00.000-07:00

Just to keep you in the loop, I finished the interior edits to the book today! Bring on the aching neck cream!

Now the publisher has to work them into the book and get it back to me for final approval. After that, we tackle the cover design, which is already 90% done thanks to my sister, Pat.

Once approved, it takes four weeks to have the book up on Amazon and Barnes & Noble.com, as well as Kindle, and in my hands, so I can begin running around to reading groups, stores, and libraries to sell it. There's also some exciting news coming in the next few weeks, so stay tuned! This has been an amazing process. Thanks to everyone for signing on! I'll keep you posted.

Meanwhile, I'm off to the Outer Banks for a week of rest before things really heat up. Enjoy the sunshine, all!

If it's to be...

2011-04-17T17:45:00.000-07:00

Make no mistake. We all write our own life story. No one does it for us—no one else controls the narrative. Whether we write it with a pen, or with our choices, our story is told by our actions. All of us leave an impression on others and the world we eventually leave behind.

Some write their stories with focused intention. They organize and follow a plan. Others experiment. They try, fail, succeed, and try something new. Still others stumble along, changing only when circumstances demand they must, struggling to find a foothold. All of us learn from others. We learn in school, from our teachers, parents, and mentors. We especially learn from and try to emulate those we admire. But often, the most important lessons are learned by accident. By this I mean, our most important lessons are inside the experience, they are behind the obvious, buried in our subconscious, but when they appear, they burst before us like magicians, miraculously clear—and these lessons change our lives forever.

Once Hugh made up his mind to heal as fully as humanly possible, he often repeated a phrase that became an integral part of how he lives his life every day. He said,
“If it’s to be, it’s up to me.” This one sentence soon defined him. He’s who he is today because he accepted what he could not change and made the very best of everything he had going for him. He’s a walking miracle, in part because he took control of his own life story—and what a life story it’s turning out to be.

Book Buzz

2011-04-16T04:53:00.000-07:00

It's getting near the time when I will realize a lifelong dream. I will have written and published a book. I will hold it in my hands. I will see others reading my story.

This is satisfying, exhilarating and frightening beyond belief. Every word of this book is my version of the truth. I have exposed my thought process, my fears, and my neurosis. I've placed my family on a glass slide for everyone to examine. They have cheerfully allowed me to do this, trusting all will go well.

Why would I do this? I've asked myself this many times. So here are the reasons I have for publishing a memoir about the most difficult experience of my life:

1. From the day of the accident until years later, I was so overcome with things that needed doing while at the same time overcome with emotion, that I could not organize my thoughts enough to make sense of them. Writing was my way of telling the story without holding someone hostage while I talked for weeks on end.

2. From the day of the accident until about two years out, I lost myself. I was not the same woman. I could not find myself in the mirror, in my heart, or in my mind. I was full of self-talk that alternated between panic and words meant to calm myself down: Oh My God, he can't focus his eyes. He can't talk to me! Calm down, Rosemary, he'll get better. Smile at the girls, don't let them see you freaking out!

3. "We're fine," became my two word response to the world when asked how things were going. How else could I answer? It soon became clear that no one knew anything about brain injury and what was going on in my house. If it happened in my house, it must be happening in most houses where brain injury occurs. So the book is that glimpse behind the front door, into the living room that has become a quiet room, into the bedroom that has become a hospital room, into the home that has become another place entirely.

4. I wrote this book as a tribute to those with brain injury, who struggle daily to find themselves, to wake up from an exhaustion so bone deep they want to sleep forever, who wonder who they used to be, and who simply want to get back to life. I wrote it as a tribute to caregivers who rearrange their lives for their loved ones, hoping beyond hope that their life will someday resemble normal again, hoping they can calm the trembling of their own heart so they can endure the marathon caregiving required of brain injury.

The interior book design is complete. I'm in the process of proofreading before we begin work on the beautiful cover design. The cover picture was taken by my friend Nancy Tomlinson at the beach and the cover is being designed by my sister, Pat Waters. This is a totally homegrown project. I can hardly wait to launch! I'll keep you posted.

Revisiting the Past

2011-03-20T06:29:00.000-07:00

My blog will switch from hospice care for Mom to the subject of caregiving for a loved one with a traumatic brain injury, the focus of my life in 2002, when my husband, Hugh, suffered a TBI.

I have decided to publish a memoir about the journey of his remarkable recovery, and the insights I garnered from the intense experience of caring for him during that uncertain time. The title of the book will be "Learning by Accident."

I began writing this book in the ICU, a few days after Hugh was struck by a car while riding his bicycle. His accident occurred on April 13, 2002. An ICU nurse told me that a written record would be therapeutic for me, and it would help my husband remember things later on. She was right. That book filled up, along with others. I wrote for hours, days, weeks, months, years...always deciphering the story, always digging for meaning, trying to make sense of the senseless. I'll use this blog to post a few of the lessons I've learned, along with helpful tips for those caring for their brain injured loved ones. It's a long, slow journey, TBI. The slowness of it can tear your heart out if you let it. Here we go.

Epilogue or Epiblog, whichever you prefer

2010-06-08T07:53:00.000-07:00

It's now over a week since Mom passed. I've cleaned out her bureau drawers and closet with my sister, Pat. I sorted her papers, notified social security, the bank, her insurance companies, and numerous others. A basket of mass cards calls to me to write thank you letters for flowers, meals, and masses said in Mom's honor. But none of this bothers me. It's the morning coffee...alone. Watching the birds... alone. Looking up from the newspaper to say, "Can you believe that?" and find she is not there, eager to discuss the latest politics. It's passing her empty room without the hum of an oxygen machine on my way to put another load of laundry in the washer. These small daily activities bring sudden tears. That large empty room, the made up bed. It's being moved to my sister's house next Monday. I'll redecorate and make Mom's bedroom a workout room. Will I still see her face looking up at me? Will I hear her voice in that room? I hope so. I never want to forget. She was too beautiful to forget.

Passing

2010-06-05T04:15:00.000-07:00

Jule passed away in her own marriage bed with Rosemary, Hugh, and her youngest daughter, Mary by her side. She talked to Larry and my daughter on the phone the morning she died, remembering details about them, sharp as ever, but she knew she was nearing her last hour. She said to Mary, "I guess all the final details are wrapped up, right?" and Mary said, "Yes except for one. Could you give me twenty more years, Mom?"

"How about twenty more minutes," she said smiling.

Some of her final words to me were, "I love you so much. You are going to have a great life."

I wish the same for her. I pray she is deliriously happy in the arms of Bill, surrounded by those she has missed for so many years. Safe passage Mom.

It's Always About the Hair

2010-05-11T07:22:00.000-07:00

Mom's energy has been sapped lately from struggling to breathe. She's sleeping a lot.

Sometimes she appears to be just plain sad. I always assume some deep or morbid reason for her sadness --the loss of loved ones, impending death.

What's wrong? I asked her last week.

"I can't do ANYTHING with this HAIR!" she said.

"At last! Something we can do something about!" I replied, and called our trusty traveling beauty stylist.

Becky pulls into the driveway and strides to the door with her big black bag.

Mom is waiting upstairs in the wheelchair, determined to have Becky trim her hair

just right this time--shorter in the back, longer in the front, just the right amount on the sides--it's no easy task to please a woman when it comes to her haircut.

Becky steps back to check her work after the last snip. Mom's been transformed into her luminous self.

Her eyes crease with a smile as she gazes in the silver mirror I hold before her. She lifts the puff of hair on her forehead to form a beautiful curl and smiles at herself.

"I feel like a new woman!" she says sounding stronger and happier than she has in days. Now there's a home remedy worth repeating!

For Mother's Day, I Got My Mother For Another Day

2010-05-09T12:26:00.000-07:00

Beautiful morning, coffee by the window and Mom surrounded by gifts from her six children.--meaningful gifts--a nightlight hand painted by her granddaughter, Julia, a book on tape from Mary, a CD of Pat's family singing, a card that made her laugh out loud several times from Peg, a thick bouquet of flowers from Bill. We watched a slideshow of Mom through the years on my new Apple computer to music. She's resting, waiting for cocktails and shrimp at 5. Exhausted and obviously uncomfortable, she smiles constantly, stretching upward with that smile that always says, I'm so glad to see you! This Mother's Day is a bonus day, a gift. I love you, Mom.

Mornings

2010-04-17T09:53:00.000-07:00

Mom sits on the side of her bed, white hair disheveled, blue eyes bright. "Good morning!" she says, before I hear her wheeze.
"How are you feeling?" I ask.
"Good so far, she smiles. And I slept like a baby. Thank God I can sleep," she adds. Her pink face shines, her stick thin black and blue legs poke out from under a short flower-sprinkled nightgown. I leave the room and stride across the hall to the mini fridge that holds her small vial of morphine. As I re-enter the room she chirps,"My appetizer," as she opens her mouth and I use the small dropper to release the drug under her tongue. "I always feel like a baby bird when I do that," she says.
"And I feel like the Mama bird," I say.
"How's your poor eye?" Mom asks. Yesterday, a bug bit me near my right eye and it's been swollen.
"My poor eye?" I laugh. "How's your poor body?" At this she shrugs. After sixteen months in hospice care, my mother would rather focus on any small ailment of mine rather than discuss her own. Afterall, we discuss her worsening health several times a week with nurses, social workers and other hospice caregivers. When she's with me, she gets to do the asking, the cargiving.
"Put some ice on that," she says, "It's red."
"Thanks Mom, I will."

Still laughing

2010-01-08T04:25:00.000-08:00

Last night, after dinner, I visited Mom in her room. She was "snug as a bug in a rug" as she used to say to us when we were children. Tucked in with the ceiling fan running (it helps her to breathe better- but her room is so cold), she said for the hundreth time that week, "I love this bed!" I hopped on beside her and pulled the throw blanket over me. Two minutes later, Anna appeared in the doorway, paused for a second, then ran over and burrowed between us. We were all engrossed in a cooking show about three chefs battling to make the Guiness Book of World records for the highest sugar skyscraper in the world. Between gasps of awe or sorrow when a sugar pillar cracked, we laughed out loud and cheered for the winner--he constructed a white sugar Empire State Building over sixteen feet tall. Sometimes lifes greatest triumphs are felt lying down. Sweet moments.

Happy New Year

2010-01-04T07:28:00.001-08:00

Jule has ushered in another new year. Twelve months ago, I stood in line at Macy's with my daughter to buy my mother a Christmas present when suddenly my eyes watered over. "What's wrong, Mom?" she asked. "Nan is very sick," I told her. "I hope this is not her last Christmas with us." She gave me a tight squeeze.

Jule was signed into hospice in January 2009. I remember the day like it was yesterday. I cried all afternoon: while we signed papers, while the nurse examined her, while she sat quietly smiling and saying, "It's alright sweetie. This is what I want." I tried to hide, walked from room to room muffling my sobs. The hospice nurse put out a 911 call on me and sent the chaplain over to console me. From that moment on, our lives improved.

Last week, my sister Mary commented that she is certain hospice has prolonged Mom's life. There have been several occasions where Mom received medicine hours after feeling sick instead of waiting for doctor's appointments, having to travel to the hospital or emergency room, or wait for a drugstore to fill a prescription. She's infinitely more comfortable. Several momths ago, when she could no longer manage a bath or shower, her aide began helping her and this has avoided slips while saving my mother's dignity.

Most importantly, we've made new friends. Her nurse and aide now feel like family. We swap stories, books, and Mom looks forward to their visits.

Happy New Year, Mom. And thank-you hospice.

On Thoughtfulness

2009-12-07T10:31:00.000-08:00

True friends think beyond the quick visit, the hurried hello, and the average gift. This Thanksgiving, Peggy T. brought Mom two reindeer tea candles with tiny electric tea lights so she could enjoy candlelight around her oxygen. After decorating the bistro bedroom with a tabletop tree, red tablecloth and other decorations, it's still the tealights that bring a smile to Mom's face. She is amazed that someone took the time to understand the importance of the simple details that might be missed by the bedroom-bound. Every night, we turn on the tiny candles. They remind her that she was not only on someone's mind but in someone's heart.

Cupcakes

2009-11-14T05:43:00.000-08:00

Dr. Norris, our family dentist and friend, stopped by with cupcakes yesterday-big moist, delectable cupcakes. Yes, I did say he's a dentist, and a very talented one, but his true strength lies in his keen intuition about people. He genuinly cares about, and engages with his patients on a level I've never experienced before. Crammed in the little corner between the wall and the tiny bistro table, he drank tea and told Mom a few touching tales. One story involved a little patient he treats who would cry his head off during every visit. He told the boy they had to be a team to take care of his teeth. He said "Okay, I won't do anything you don't want me to do, but YOU call me if you get a toothache, not your mother. And when you want my help, I'll be here."

The call came a month or two later at eleven p.m. one night. A tiny voice on the phone said, "Dr. Norris, my tooth hurts." True to his word, the doctor went to the office and the child let him fill the tooth. Sometime after midnight, he told the child to go home and rest and call for an appointment to take care of a few other cavities before they get to the hurting stage. The boy did. Dr. Norris was able to get a six year old to call the dentist's office for an appointment. Now that's a stroke of genius.

And so were the cupcakes.

The Bistro

2009-10-31T07:15:00.000-07:00

Jule comes downstairs less and less these days, and eating in the bedroom began to feel depressing, so I decided to invest in a table to put across the hall by the small window in Anna's former bedroom, hoping it would create a bistro-like atmosphere. After scouting five stores without success, I pulled into the driveway feeling down. As I shifted the car into park, there it was. The table. The small round glasstop table on my front porch. Perfect! I immediately dusted the spiderwebs off, washed it down and moved it upstairs. My old table cloth and two spare kitchen chairs completed the ensemble. Now we have a homey new corner, ten steps from Mom's bed but looking out over the autumn leaves coloring the backyard lawn. We play Scrabble, read the paper over coffee, and she writes her notes away from her bedroom in this cozy nook. I didn't have to go searching for the perfect table, it was right here all along.

After the pause...

2009-10-14T16:40:00.000-07:00

Where did the time go? I was blogging almost daily then stopped and life took over. Now a few weeks have passed. The BIAV Scrabble Tournament is finished, a child moved out, I got to see two of my cross country sisters, my trip to Los Angeles is a fresh memory, and the JRW writer's conference is behind me. I'm back pecking at the keyboard, only for some reason, I have little to say, so I'll ramble. After so long away from my writing, I need to warm up anyway...

Fall is here. As usual, we went from summer to winter--A/C to heat. Mom's breathing has grown more labored. She can't walk as far or do much without coughing or wheezing, so she prefers to be still. She remains calm and composed, sweet and agreeable. Two things she does still love, to eat and play Scrabble. She beats me every time, though last night by only two points. We still watch MadMen and it blows her mind: the decadence, the indecency, the cheating and the truly wonderful clothes! She coughs when she laughs, but she laughs anyway.

Weekend

2009-08-24T07:37:00.001-07:00

Going away and coming together again makes time together more fun. This past weekend, my husband and I visited the beach. Hugh surfed Hurricane Bill (I like to think my dad sent those wonderful waves as a gift to us). Mom enjoyed a peaceful weekend at home and had drinks and dinner with my friend, Peggy, who has become a "dear one" to my mother these days. Last night, we arrived home late. Mom was up waiting for the latest episode of MadMen in her bedroom. Mary had just returned home from a camping trip. At ten, Mary and I rushed upstairs and plopped on Mom's bed where we all watched this decadent show, gasping from scene to scene, laughing at each other's reactions. It's nice to be home again.

Words Matter

2009-08-18T06:57:00.000-07:00

What is end-of-life planning? What is a death panel? We live in an age where words matter. Speeches and videos go viral on the Internet and cable news. Headlines shaped by manipulating parties are designed to create vivid pictures in people’s minds to cause a reaction. It's nauseating how predictably people comply.

End-of-Life planning suggests that our lives will end. Not exactly news. Death panel suggests a firing squad (Nevermind Al Quaida, your government wants to "pull the plug on Grandma"). I’ve come to believe that humans have the strongest survival instinct on the planet. Even while we knowingly pollute our land and water, supersize our meals, and consume toxic substances on a daily basis, we think we will live forever.
Sorry folks.

For those of us who have helplessly watched an older relative or friend suffer from a chronic disease and waste away in the hospital, poked with needles and fed with tubes, another possibility exists. The possibility that we might avoid agonizing hours on a ventilator watching family members cry at our bedside. We will still get old and sick, but we will choose comfort over intervention, nature over machinery. We’ll opt for pain management versus another invasive "cure." We’ll accept. There is no cure for death.

No one is saying everyone needs to sign a living will. But everyone certainly has the right to know they exist, and to understand how it might impact a family at the most crucial decision-making moment in their lives. Whether you sign it or opt out, there is relief. Knowing the facts and making a fully-informed decision takes the burden off a family that may have to guess your wishes in the future.

End-of-life planning is what grown-ups do. They plan for themselves, and they plan for their children. Why should anyone but the patient decide what treatment plan to deliver when disaster strikes? A grown-up makes that decision him or herself, in advance, with counseling.

The phrase death panel was specifically designed to incite fear and demonize people in government. The problem is: it was spoken by a woman who makes her living working in government.

We drastically compromise our future by our own inability to understand and act upon anything longer than a sensational headline.

End-of-life planning used to sound like a reasonable phrase. Lately, it has been dished up with side orders of horrific intentions meant to misinterpret its meaning. So let’s acknowledge that words matter and change them to suit the activity. How about comfort planning or the family directive. Personally, I like the phrase “living will.” Let's go back to that. It suggests consideration and intent, that the living will make their intentions clear!

As far as the label death panel goes, it doesn’t deserve another label—it doesn’t exist.

Happy Hour at the Hospice Hotel

2009-08-15T07:04:00.000-07:00

The words of Monsignor Charles Fahey, a Catholic Priest and Chairman of the board of the National Council on Aging said it best:

“If I cannot say another prayer,
If I cannot give or get another hug,
And if I cannot have another martini — then let me go."

Cheers, Mom...want a dividend?

Heatwave

2009-08-11T09:46:00.000-07:00

Just served Mom a hot grilled cheese sandwich in our ice-cream-freezer-of-a-house while it's nearly 100 degrees outdoors. Today we talked about AC. More than anything else, I believe it prolongs life in this day and age, especially in the south! Growing up we had the window kind that blew right on you in your small bedroom and grew frosty coats of ice from condensation, but not all our rooms had AC. Mostly, we ran through the sprinkler or just refused to move for long periods as the heat bore down on us like a tight blanket. When that blanket covered your mouth, it was airless. Mom says the colder the temperature, the easier she can breathe. I don't know who invented the airconditioner but I'm glad it's here and chillin.

The Topic Nobody Wants to Talk About...

2009-08-05T03:59:00.000-07:00

I’m glad I was raised not to fear death. It’s suffering I fear, helplessness. Death is the end of suffering (for those of us who refuse to acknowledge the devil) and the beginning of the answer to the most mysterious question we face while living. When I ask my mother, “Are you afraid to die?” She says, “No.” After a pause, she adds, “But if Dad is not there waiting for me I’ll be really mad.”

Junk Drawers

2009-07-30T05:57:00.001-07:00

I used to have only one junk drawer in my kitchen, but lately, nearly every drawer in my house is earning that distinction. Today, while sorting through rubberbands, paper clips, dead pens, pointless pencils, and business cards from where we lived two states ago, I found a stretched out hair tie. Oh well, it would do. Disgusted, I elasticized the mess on my head that should have been cut weeks ago and fought the urge to tear up every drawer in the house and get them in order once and for all.

Instead, I thought about it. And much to my surprise, it cheered me up.

My drawers are a mess, but my priorities are straight. Sitting on my desk is the Prayer of the Caregivers from the National Association of Catholic Chaplains, given to me by my sister:

"Give us the grace this day
to tend those in our care
with full attention
and true tenderness...

Create in us a generosity of spirit
that we may clearly see
the unique spark
in each person we serve,
that no one in our care today
might feel themselves a burden,
another chore on a long list."

I don't always succeed in doing this, but I am trying to be a better caregiver each day.

Junk drawers are another chore on a long list. Sharing coffee and hot buttered kaiser rolls atop my mother's lovely floral quilt in her bedroom is the work and joy of my life.

Junk drawers be damned!

Stories

2009-07-29T05:02:00.001-07:00

Stories, memories, and family history are gifts we can give later in life. When we are unable to buy presents because we can no longer walk, or bake a cake for the people we love, we still have our stories to share. Mom's memories, formed into stories are like stones piling around the house that holds our family. They will buffer us when times are hard, enable us to conjure up lost faces, and provide a vivid backdrop of scenery painted with places we have long forgot. These frozen moments in time are ours to keep and pass along. These tiny stones remind us that piece by piece we gather, shift, then gather again.

A Story about Mary as told by Jule:

2009-07-29T05:00:00.000-07:00

When Mary was in first grade, she brought the same library book home every week. The book was called, “I want to be a Nurse.” She had the whole book memorized. From an early age, she was a nurse because she always wanted to help people. She helped an eighty-year-old neighbor who lived alone (Mae Mary) who had been a nurse for many years. She shopped for her, cleaned her house, and listened to the woman’s nursing stories. Later, she became a candy striper at the hospital. Becoming a nurse was her dream in first grade and she made it come true.

A Story about Pat as told by Jule:

2009-07-26T10:32:00.000-07:00

Patty rarely spoke. She was a very quiet, thoughtful child. Then, when she was about ten or eleven, dad played, “The Way We Were” on the portable organ on the patio at the cousin’s party. Patty sat up on the organ and started to sing in front of her eighty aunts, uncles, and cousins as though she had done it all her life. Her father and I were awestruck…her voice was amazing. Years later, in high school, she starred as Maria in “West Side Story” and brought the house down.

A Story about Peg, as told by Jule:

2009-07-25T04:17:00.000-07:00

Peg talked very early, and every morning, when I went into her room, she would lift up the bumper on the side of the crib, and poke her smiling face through, and say, “Ah-mornin, mommy.” She always started my day off right.

A Story about Rosemary (That's me!) as told by Jule:

2009-07-24T06:28:00.000-07:00

Rosemary was about four when both she and the baby, Peggy, had a bad case of chicken pox. I held Peggy through the night to keep her from scratching. Because Rosemary was so sick, she was allowed to sleep with her father, which was very unusual. After two nights, Rosemary felt better and I told her she had to go back to her own room. She was furious and cried, “I’m afraid!” She stomped away. A few minutes later, she came to our bedroom door, and yelled over to us, “I know why you two always sleep together! You’re BOTH scared!”

A Story about John as told by Jule

2009-07-23T05:57:00.000-07:00

"John was four years old. He turned to me and asked, “Who is grandma?” and I said, “She is my mom, just as I am your mom.” John thought for a minute, smiled and said, “God is so smart. That way, everybody gets a turn.”

After telling that story, mom laughed and said, “Now he has HIS turn as a grandpa!”

Cackios and Beeps- a story about Billy

2009-07-22T05:39:00.000-07:00

Beautiful memories are soothing and best when shared. To honor this sentiment, my week will be devoted to stories about Jule's six children--one story about each child each day-- starting with the oldest, Bill. You will be hearing these stories in my mother's voice as she narrates them to me.

"Our first apartment was in Parkchester, Bronx, NY. My best friend, Kathleen, lived in the next building, and her son Michael, and my Billy were two years old. We used to take the children out in the morning to play in the park, then have lunch together in either of our apartments. One day, we put some Cheerios on their high chairs. Billy said, “I like beeps.” Michael laughed out loud, pointed, and said, “Billy calls Cackios beeps!”

Friday Gifts

2009-07-15T13:05:00.001-07:00

I continued talking to mom about her engagement period to dad. "Back in those days," she said, "people didn't give big shower gifts or have a lot of money, so your dad and I decided we'd exchange small gifts every Friday while we were engaged-- to get ready for our first apartment."

"Do you remember dad's first Friday gift to you?" I asked.

"Yes! I was really upset and so was my mother. It was a HUGE ironing board-the biggest ironing board you ever saw in your life. When we finally did get married and move into our tiny apartment, I had to store it behind a door because it wouldn't fit anywhere else," she said.

I asked her what she got for dad and she said she bought him mostly clothing since he had nothing to wear when he came out of the Air Force. "One week I'd get him five pair of socks, another would be a dress shirt," she said. Her other gifts from him were an iron, toaster, set of towels and practical things. She loved the odds and ends of dishes, pots and pans best. "It was so much fun opening those gifts every Friday. We enjoyed it from November to June in 1951 every single week like a little Christmas," she told me.

I can't help thinking how spoiled we are today when I hear how much these mundane items thrilled her. It hit me how the years have passed like minutes and all those once treasured items are long gone, but still feel so special in her memory, not so much for what they were, but for how they would be used: in their new apartment, love nest, home.

Engaged!

2009-07-05T05:59:00.000-07:00

I asked Mom, "What was the happiest day of your life?" She thought for a few minutes and before answering a huge smile lit her face. "The day your father proposed to me," she said. From here on, her voice took on a youthful quality, she spoke fast and sounded more like one of my daughters speaking than a woman with breathing problems.

"Dad called me and told me to get dressed up to go to a party at Jane's in Scarsdale ," she said, still smiling, "It was dad's birthday, November 28th, 1951, and it was cold but clear outside. Your father always did special things on his own birthday," she laughed when she saw me shake my head. Continuing, she said, "We were going to a party at sunset. I put on my favorite dark green wool dress and he picked me up in grandpa's car. He was using grandpa's car at the time because he was working at Brunswick School for Boys and had no car of his own--he had moved back into his old house with Pop after his time in the Air Force. He was in a good mood but oddly nervous. He started driving on the Shore Road in Westchester County when he pulled off to the side and stopped in a grove of trees by the Long Island Sound. I was confused. I thought something was wrong. Then he reached over to the backseat of the car and pulled out a long rectangular box all wrapped in white with a huge bow on it. 'I have a present for you before we go to the party,' he said. He was sweating. I opened the box and there was a beautiful bride doll in the box with an engagement ring tied to it's ring finger. The ring was platinum with a single round diamond. I looked up at your father, and he asked, "Will you marry me?"

Mom's face went back to that very moment and she paused, remembering.

"Did you kiss?" I asked.

"Naturally!" she said. "Then I asked your father, 'What about the party?' and he said, 'There is no party!' We were so happy, and so excited. I wanted to tell grandma first, but your father said, "Let's stop and tell Pop first, since it's on the way,' and we did. Pop was sitting in his favorite chair in the living room when we arrived, beaming. I could tell he had been waiting for us to come. Pop got up from his chair, gave me a big hug and asked, 'Do you have any idea what you're in for?' We all laughed and I discovered that he had helped Dad pick out the ring. He had been putting aside money that Dad sent home from his time in the Air Force and that's how they bought the ring. From there we went to my mom's house and shared the news with her. It was the most romantic night of my life, and the happiest."

Independence Day

2009-07-04T07:21:00.001-07:00

Freedom. We cherish and celebrate freedom and independence in our country today. While reading the newspaper, I can't help but feel something so much greater than luck or gratefulness. Having been born in this country, when I was, to the parents that nurtured me, seems more like a supremely divine blessing than simple luck or good fortune. I grew up in a home that was stable in every way (albeit, with a good does of the denial and surreal jollity that permeated the fifties and lasted into the sixties in our house). Compared to the flamethrowing curse-laden dish breaking fights, the domestic violence and infidelity that dominate the news and reality television today, I grew up in a fairy tale. Witnessing the violence of the Taliban, the turmoil in Iraq, terrorism in Europe and the middle east, and poverty in major pockets of the world, my fairy tale took place in Oz.

Thanks mom and dad, for teaching me that by taking care of family in the best possible way, I secure a tiny particle of humanity that contributes sanity to the whole. My hope is that today, all people that cherish freedom and peace achieve moments of them in their lives --anchors to keep them safe when it storms.

On Solitude

2009-06-26T20:28:00.000-07:00

Marianne Moore, a poet, wrote that "the best cure for loneliness is solitude." This sentence explains my mother's demeanor. She spends a good deal of her day alone in her room, and yet everytime I visit her, or she comes downstairs, she is cheerful. I have asked her often, "Are you lonely? Are you bored?" Her response is always, "No, I'm content." On occasions, she has admitted to missing my father, but her missing him, I know, goes well beyond lonliness. His death has left a vacancy in her life that will never be filled, and yet her loving memories of him have colored in the darkness of her two years without him. She waits to join him, and she waits patiently. My mother has found solitude--that feathered cushion upon which she places her trust. A cushion that absorbs the outer noise so her inner voice is heard. She listens and finds safety in the space it provides.

Therapy

2009-06-24T18:24:00.001-07:00

That which I most detest, I am.
Mom and I have been watching "In Treatment" on HBO. We thrive on watching others cry, lust, deny, and vent. As spectators, we can easily spot these patient's weaknesses and vulnerabilities, and we marvel that they can't see what we see. Like voyeurs, we are glued to the drama and especially enjoy the episodes where the therapist visits his therapist and behaves just as blindly as his patients.
As our own lives play out and we behave like humans do, it's comforting to know everyone else is just as nuts as we are. This is feel-good TV.

New Day

2009-06-14T13:02:00.000-07:00

Where did this day come from? Out of the thick as molasses night air I could barely inhale dawned a crisp sunny morning with a breeze that ruffled the hickory's feathery leaves and nearly made the maples chime. "Want to have coffee out on the deck today, mom?" I asked. She has not left the house in weeks, now favoring the filtered chilled air that makes it easier for her to breathe in summer in Virginia. Nodding, she removes her oxygen and hangs the noose shaped canula over a chair stem. We step onto the deck and immediately I see her eyes close for a stretched moment in gratitude. She scans the backyard, so densely leafed out by now that we can barely see the houses that back up to ours across the creek. As she inhales deeply, a smile creeps in. It's her wedding anniversary today, but her husband died two years ago. He loved to sit with her out on this deck. As if called, our red cardinal flies to the feeder and glances at mom. Deciding it's okay to eat, he gets to work pounding out sunflower seeds. Her silver curl stirs in the breeze. "This is lovely, just lovely."

Going Away

2009-05-25T13:46:00.000-07:00

I'm leaving for vacation tomorrow. I'll be away for about ten days, which feels like a lifetime in my anticipation. Once we go, it will be over in what feels like the space of a minute. Mom will be on her own, and she says she's looking forward to it. Even though she's staying home, it's like a vacation for her as well. Different people will be stopping by without the filter of Rosemary. She'll have the house to herself. She'll eat some of her favorite foods, like canned hash with an egg on top. I haven't made that lately:) When she sits in her small high back chair, I can hardly see her behind the tray that holds the small mountain of books she plans to read. Going away provides us with new experiences to share when we get back together. It will be like old times. I'll burst in the door when we arrive home, anxious to tell her all about our time in the city and at the beach, and she'll fill me in on all the news around home. Funny how going away is exciting but coming back home is the best of all.

Cages

2009-05-18T06:32:00.000-07:00

Trapped.
There are worse cages then those that surround the body. The steel-trapped mind is one in which thought after thought runs up against a brick wall, negative sentences repeat, and answers loom as far away as the darkest reaches of the universe. How can we sever that electrical current that has a life of it's own --the one that has taken over our thought process and dragged our heart into the picture? The one that says, "Poor me. Life is so sad. No one understands me." I find that the only way to disconnect from this destructive thinking is to face the truth. "Yes, no one understands me--but for that matter, no one understands anyone, really." We all live in our unique, individual, and separate reality. The way to break out of this negative pattern is to reach out to others, not for understanding, but to connect. I find that anytime I ask someone, genuinely, "How are you?" and pause to really listen, I have severed that negative thought pattern by taking a new route. Anytime, I smile deeply into someone's eyes and receive a smile in return, I feel joy. And anytime, I grant a simple wish, or perform a small act of kindness, my mind calms down, and for a minute, I feel uplifted by connection. It's taken a long time, but waiting for others to "cheer me up" is not the answer. Pacing the floors of the cage only leads to more pacing. Opening the doors of the cage is up to me.

Simplicity

2009-04-26T06:11:00.000-07:00

Yesterday, as I sat on the beach, I remembered our family trips to the ocean when dad brought along the habachi. It was a tiny grill that somehow cooked enough food for eight people. Just remembering that grill made me smile. I recently saw a man tug an enormous gas grill on wheels that would not turn in the sand, onto the beach. His state-of-the-art contraption came complete with hanging utensils and a kitchen cabinet built in underneath! There were three whole people in his family to feed, and the baby was an infant--hardly able to down a juicy burger with the works. Oddly, this train of thought led to my mother and how simple her life has become. She has emptied and moved out of her large home on Long Island. She has given away most of her possessions. Somehow, as she gives things away, she becomes more full herself. Last weekend, she gave the Healey family nativity-the one she and my father received as a wedding gift- to my sister who is graduating with her Master's degree in Pastoral Care. This gift had special meaning. It was given in recognition of a journey about to begin --a birth. My mother nurtured this gift for over fifty years, and now she can rest assured that each Nativity piece will bring a new sense of renewal and joy to her own daughter as she begins a new path. I'm deeply grateful that my mother has had the opportunity to simplify her life on her own terms, by giving away beloved treasures to the people she loves more than life itself.

A wonderful resource

2009-04-19T17:31:00.000-07:00

I have been remiss. After three weeks without a break, I spent two days in the outer banks of NC with my husband and feel like a new person. My mother also had a great time with my sister while I was gone. Getting away, even for a day, is very rejuvenating. I also discovered a website that has tons of great information and soothing tips.

http://www.caregiverrelief.com/biography.html

Recently, I had lunch with a friend who is making frequent trips to see her mother who has Lou Gehrig's disease. After talking about her visits and heartaches, she apologized then sent an apology email to me that said, "Thank you for putting up with my whining."

I told her not to worry--she's the only kind of friend I have time for anymore. No more talk of weather, outfits, and gossip--I want good real conversation, complete with raw emotions and honest opinions. A dear friend of mine told me years ago after losing her mother that she did not want friends that called her up to talk about other friends. She would only make time for people with meaningful lives, people that cared about other people and wanted to make life better for those they loved- she had no time for petty grievances. She made a lasting impact on me.

Here's to real friends, raw honesty, and listening to each other with good intentions.

A Pain in the Neck

2009-03-31T06:51:00.000-07:00

I've been writing less because sitting at the computer hurts my neck. It's gotten so bad that the pain runs down my arm. I'm cranky and irritable and I complain to my mother about it. "My neck's killing me! This is awful. I hate this!" I whine several times a day. And my mother--being the mother she always is, listens and understands. It occurred to me today that I'm whining to a woman who has lost the ability to do just about everything. She can't walk from here to there without struggling for breath. She sits patiently, smiling, so she's "not a burden" to me. Her legs are long sticks of black and blue from the prednisone she takes daily. Her shoulders ache from tension. She leaves things left undone...because she can't do them, the sheets weren't changed this week, her desk needs dusting, and she doesn't even bring them up, because she doesn't want me to "work too hard." Mom rarely complains, and when she does, it is always followed by a lilting laugh and the phrase, "Oh but it's just the way it is. I'll be fine."

I found the gift of my pain in the neck this week--it's compassion. I appreciate more acutely what my mother endures minute to minute and admire her stature and composure. She makes me try harder to be a better person. My neck's killing me right now but I'm not going to announce it to the world (At least I'll try). Thanks again, Mom, you never stop teaching.

The view from above

2009-03-03T06:39:00.000-08:00

My mother's peaceful presence offers the only truth we need in life - seek out happiness moment to moment instead of focusing on what is lost, needed, lacking, or not good enough. Blame and bitterness is replaced with pardon and prayer. Material desire is replaced with satisfaction for what one has now: a warm blanket, a hot cup of tea, a faithful companion, and a window that looks out on the birds from far off places singing sweet songs. They flutter and feed then fly away on wings that soar to the heavens. Aloft, they must see how small we become as they hover high overhead, alone, but safe from harm.

Reunions

2009-02-22T07:04:00.000-08:00

I find I attend many reunions lately. They aren't exactly barbecues or picnics and don't require any preparation, travel, or fuss. They are reunions of the mind, heart, and spirit. My mother lives with me, but at the same time, she resides in a place of retrospection, often relating any news story of today to a story in her past, exposing the threads of time that bind us in our experiences. These threads are her oral history and her gift. I need only gather them in the moment and understand that they are passed along for safe-keeping, and meant to be shared when the time is right. Our memories are medicine. They morph over time. Like a potent elixir, the right memory applied to a particular ill can soothe better than any painkiller or amnesiac. It's not always in forgetting that we are calmed, but in remembering that first kiss, newborn baby, or view from a mountaintop. I'm collecting her moments, so I can conjure them up when she'll need them most, and so I can smile along with her, when we both might rather weep.

Fragile state of hospice

2009-02-17T05:46:00.000-08:00

The House of Representatives approved it's version of the economic stimulus plan on Wednesday, which includes $134 million for Medicare funded hospice programs. It also delays the already approved Medicare budget cuts to hospice for another year. This isn't perfect, but it's welcome news for those in hospice right now.

Still, everyone should realize that the economy has hit hospice hard and we need to work to keep it for the future, our own future. The more of hospice I see, the more I like. Having had the (sad) opportunity to compare living situations in hospitals, assisted living, nursing homes, versus hospice care at home, there is really no comparison. Hospice at home is the best case scenario. To be able to stay with loved ones in your own bed, looking out your own window at your own backyard...well, enough said. If you care about this issue, call or write your representatives and be sure your voice is heard.

It Takes a Child to Remind Us

2009-02-09T13:08:00.000-08:00

Sometimes it takes a child to remind us that we just don't have all the answers--and that's okay. As I sat in the audience with my brother and mother Saturday watching five kids sing and dance their way through a live show called, "Children's Letters to God," I could not help but laugh out loud and realize that many of their childish questions are the questions that endure over a lifetime. Watching these kids stop, look up, ask their question to God, then run off and get on with life was refreshing. We all stop and ask at different times "Why is all this happening? Why do people have to suffer?" The energy and raw curiosity of these kids gave mom a two hour reprieve--I'm sure she forgot that she had trouble breathing as she soaked in the presence of these mini actors that evoked fond memories of her own cast of characters years ago. She was shining in the audience and said she could not take her eyes off the littlest one with the larger than life personality. People of all ages have their crises...even little people. Some think the world will come to an end over a turtle dying or a bug being squished. But they speak their troubles out loud, get mad, sad, or sulk for a bit, and skip away. Life goes on. Lesson learned.

A Time to Remember

2009-02-04T08:27:00.000-08:00

When I tell people that my mother lives with me and is in hospice care, they draw back in horror and say, "I'm sorry." I don't even try to explain that I'm happy with this situation, that we are spending amazing time together, as in we just watched all of Season One of Madmen on DVD with no commercial interruption while having cocktails. As in... we took an impromptu drive the other day and munched hamburgers and fries in front of a lake because it decided to be spring in late January. As in...she told me, over coffee, of the story of her date with Dad at age fifteen. He got tickets to the opera, Rigoletto at the Metropolitan Opera House from his older sister, Georgette. Spiffed up and sweating from nerves (it was cool out), he picked Mom up and they took the trolly from Tremont Avenue in the Bronx to Westchester Square subway station...got off the subway and Dad was lost, it was late so he hailed a cab. He jumped in after Mom and yelled at the cabbie, "Metropolitan Opera House". The cabbie looked at Dad squarely and said, "Sorry Sonny, can't take you there...it's right across the street." Mom said Dad was mortified. So began the many years of joy and sorrow she spent with Pop. Stories like these over coffee are golden nuggets. Mom looks fifteen again when she tells them. Who says hospice has to be so horrible?

Hospice Awareness

2009-02-02T13:37:00.000-08:00

Hospice coverage has been cut back and hospice companies hit hard by the gas crisis and economy...a fact mom and I learned three weeks into her care with VITAS, the largest hospice company in the nation. Imagine our surprise when no sooner did we get acquainted with the hospice team and finished switching out all mom's oxygen tanks and meds, we heard that the Richmond VITAS hospice was closing down--her hospice nurse sat in our living room in a state of shock. "Everyone's been fired...we all have two or three weeks to move our patients over," she said sadly. Mom is now in the care of Bon Secours, St. Mary's Hospice- but the changeover was unnerving and we are glad she was not in crisis when it happened. Check out this article to understand more about the stimulus package and how it impacts this very important facet of our healthcare system and stay active in keeping this benefit covered under Medicare. Thanks :)
http://www.mercurynews.com/politics/ci_11565776?nclick_check=1

Day to day to day

2009-01-30T07:25:00.000-08:00

Anton Chekhov said, "Any idiot can face a crisis; it is this day-to-day living that wears you out." This says a lot about caregiving. Personally, I have loved those that I cared for so much, the wear comes more in the form of weariness from feeling helpless, and the devastation of witnessing the transformation of a vibrant loved one to a vulnerable loved one. When I am unable to relieve someone's pain or help their life circumstance, it leaves a scar on my own heart, an ache in the background. In my own experience, the three people I cared for were each so heroic in their own circumstances, that it made (makes) my day to day a series of lessons. The gratitude I receive in return is more than compensation and soothes that scar. Time spent together is precious. I have experienced the circular nature of life and relationships, the give and take, stretch and ease. Caregiving is a gift to us. It may wear us out but it won't wear us down, it will make our hearts larger in the end.

Family

2009-01-29T00:17:00.000-08:00

"If everyone would just take care of their own family the world would be a better place." I've heard my mother say this many times. It sounds so simple yet it's so profound. Many people spend their wall to wall scheduled days working, volunteering, trying to give back to their community, stressed out and exhausted from all the stuff they have to do. There is little time and energy left over for family-the people we love that need us most. In fact, our families often get the leftovers...the tired, grumpy bits of us that collapse on the couch at the end of the day. Just when you've given all you have to give, your family stands there wanting more.
Here's an experiment. Decide for one week that the members of your family are honored guests at your house. Don't tell them you have decided this, just act this way and see what happens. Dole out kisses hello and good-bye. Greet members of your family like the family dog greets you, with unconditional excitement at their presence. Say the words, "I understand" when they have a hard day. Listen. Give a heartfelt compliment instead of just thinking it. If mom's theory proves true, the world will be a better place. (And you might discover a few surprises yourself).

I wish I may, I wish I might

2009-01-28T23:56:00.000-08:00

Woke up wide awake at 2:30 a.m. again with thoughts running wildly through my head. I did what I always do when I lie awake in bed at night. I prayed. Whatever you call it: wishing, meditating, praying- it's where we go internally to give thanks, face our fears, ask for courage and strength, or send our questions up to the universe-especially those questions we don't know the answers to. Why do good people suffer? What is the meaning of our life? My mother's room is her nest, padded with mass cards and small prayer booklets. She is a devout Catholic and it has served her well. Her faith shines through her daily actions and guides her life. She says she's not afraid to die, so why am I afraid to watch her die? "Say a Novena for me, Mom." I've heard my siblings say this sentence many times over the years. Ever since we were little kids we knew the Novena was the 'big' prayer, the one that meant business and got results. Mom's Novenas were our emotional booster shots. There's comfort in prayer, the kind of comfort that reaches through the blackness and takes you by the shoulders, reminds you that your words drift upward and twine together with all the other prayers in the universe to form a sort of net that catches us. So here I am once more and here's to all of you out there wishing and praying for peace.

Outer Banks

2009-01-25T06:27:00.000-08:00

I'm in the OBX right now for a weekend getaway with my husband. I've been advised to 'take a break-relax a little.' I visited with a dear friend, Nancy, yesterday. It was her birthday and we took a walk in the winter sunshine, then had lunch out at a landmark diner on the beach road. She's someone I can pour my heart out to and she never hesitates to give me the same treatment. Honesty with compassion, so refreshing. Last night was dinner out with my husband and another couple, followed by a fire in the condo and a cuddle on the couch. Yet even with all this, there's the invisible umbilical cord connecting me to that bedroom upstairs in my house in Richmond where my mother spends her days and nights. A nurse is looking in on her this weekend for the first time. It's all new to us-- the need for her to require help--and so shocking to me, since she was always the first one to help someone else. That's why, when she called to tell me the nurse has had a somewhat difficult life, and that she kissed my mother on the cheek when she left, I wasn't surprised. She has already bonded with this stranger and become her friend and mentor. In fact, I smiled to myself knowing full well that we are paying this nurse and she's receiving the gift of time spent with Jule, and will come away a better person for it. Truth is, it's great to get away, but I can't wait to get back home.

Insomniac

2009-01-22T21:42:00.001-08:00

It's 12:41 a.m. and I've been tossing and turning...not sleeping is the hallmark of a caregiver. I know many non-sleepers who share this trait:all day they function quite well (With the exception of those very first "gotta get up NOW?" moments) but at night, when it's dark and quiet, troubling thoughts come marching through like a parade complete with trombones and trumpets. I've tried just about every remedy including ear plugs in a quiet house, and sitting right in front of me on my desk is my empty cereal bowl (maybe the milk will help). I have relaxation tapes, I read in bed, and make my husband rub my back (Sound familiar sibs?). It's all to no avail. The upside of this is that I have a deep appreciation for a good night's sleep. I treasure it like an unexpected gift and even now, I'm thinking, maybe tomorrow I'll get one :)
When my children were babies, I sang to them...the song from Mary Poppins: "Stay awake, don't rest your head. Don't lie down upon your bed. As the moon drifts in the sky. Stay awake, don't close your eyes. Though the world is fast asleep. Though your pillow's soft and deep. Your're not sleepy as you seem. Stay awake, don't nod and dream..." They loved that song. I never knew I'd be living the lyrics. Good night all. Sleep tight.

My Funny Caregiving Story

2009-01-19T19:47:00.000-08:00

My dad had dementia and lived in an assisted living facility. One night, the phone rang. Dad was being taken to the hospital. I rushed to Morningside to be there when the ambulance arrived so he wouldn't be afraid. He lit up, as he always did, when he saw me. Everyone loved my dad. He was gregarious and sentimental, always friendly. As the crew carried him out on a stretcher, the nurses and aides crowded around him wishing him well. "I love you Mr. Healey," one nurse called to him, as they carried him down the hall. "I love you too!" yelled dad in his musical voice, then he lowered his head, looked at me and asked, "Who was that?"

A Little Humor Never Hurt Anyone...

2009-01-18T14:25:00.000-08:00

Okay, several friends have written me on email commenting on my blog but no one writes on the blog site under comments, and what I've heard from people is....whew, this is depressing...you could use a little humor...so here is the challenge...

For those of you who know how to post a comment I'd like to hear your best funny caregiving story EVER...I will sleep on it and post mine soon...ah, the suspense! Please, someone WRITE:)
(and, on a personal note, to my friend, "Retoite" you better write soon).

How Long Do I Have?

2009-01-17T12:35:00.000-08:00

From the moment we are born, we begin to die. It's odd how our culture waits for a labeled disease and a deadline to say we are dying. "He's dying of cancer, or she's dying of heart disease." Mom's hospice nurse reminded me that we will all die and it could be sooner or later so let's all get on with living. That's the message of hospice. Live well, live comfortably, and live with dignity. This is advice I could use right now in my own life. Why wait until "I'm dying."

Walking Through the Wilderness

2009-01-15T17:12:00.000-08:00

Caregiving often takes us where we don’t want to go. In a paper entitled “The Wrath of God” written by my sister, Mary O’Brien, for her Masters degree in Pastoral Care, she refers to a poignant quote by John Sanford from The Man Who Wrestled With God. His words hit home with me.

“To be forced to undergo a journey through the wilderness is an archetypal experience. Perhaps everyone who is called upon to a higher psychological development must undergo such a wilderness experience. There are many ways we are forced to undertake such a journey. People can be plunged in to a psychological wilderness, a dreadful time of doubt, anxiety, or depression and never leave their doorstep. Looked at purely clinically, the journey through the wilderness appears to be a sickness or breakdown; looked at spiritually, it may be an initiation or rite of passage we must undergo in order that a change in consciousness may be brought about. Egocentricity dies hard in most of us. Often only the pain of a wilderness journey can bring about the desired new attitude.”

These words jumped out at me as I thought about all three of my caregiving experiences. In each case, the person that was sick underwent a transformational change. As a witness to their journey, I too was transformed and taken through a rite of passage that produced a potent blend of fear, denial, anger, sorrow, joy, gratitude, and eventual peace. Sometimes the lessons learned through hardship are better learned earlier in life than later, as was the case with my husband’s sudden injury. Live for the day. Enjoy the moment. Don’t sweat the small stuff…clichés—that is, until you truly understand and live what these simple sentences mean. All these lessons have stuck with me and have greatly enriched my daily life. I’m grateful for having walked through the wilderness with such mentors as my husband, father and now my mother.

Take Care

2009-01-13T12:00:00.000-08:00

I often leave people with a cheerful "take care!" Only today did I look at the words literally.
To one who gives care most of the time, taking care can be difficult. I went for physical therapy this morning for pain in my neck and the therapist gave me print outs of exercises to do along with a healthy dose of advice: stop reading in bed, raise the computer monitor, get up and do ten sets of these stretches for every hour at the computer--sounded like an awful lot of rules to follow just to limber up my neck, but the therapist said if I didn't do it, I would have a bulging disk, and that sounds like something I don't want.

Three generations of women are living in my house this week. One of my daughters is home on break from college. She offered to cook me a vegan lunch. She heaped my plate with roasted vegetables and a slice of toasted whole grain bread, sat down with me and ate. Then she cleaned up the mess. Eating such wholesome food made me feel a bit healthier. I actually "took care" today, and it was a welcome change of pace.

We learn what we let in

2009-01-09T08:38:00.000-08:00

I've taken care of three loved ones. First was my husband, who suffered a severe traumatic injury in a bicycle accident in 2002. He taught me endurance and patience. For nearly two years, he struggled to regain the use of his left side, to rekindle his memory and to restart his life. His recovery was a near miracle and was so grueling, it left me with post traumatic stress, a stiff neck, and some emotional baggage. Thankfully, my happy gene and lots of support from family and friends helped me remain sane. Once he was back to work, my dad's health deterioriated. His problems were many: heart disease, diabetes, weak lungs, and vascular dementia kept me busy with many doctor visits, falling injuries, emergency room visits, and his ultimate death. He taught me to see the lighter side of everything, including sickness. "Death is a part of life," he'd say, "It's all just a cycle." No matter how horrible he felt, he always lit up when he saw me. He was my "strong dad" to the end, if not in body, in spirit. And now I care for my mother, the woman who has been my rock through all these other times. She has encouraged me, advised me and let me cry on her shoulder. She lives upstairs in my house and is in hospice care with COPD, a prisoner of her own immobility. Moving takes her breath away, so she mostly sits and reads in her cardigan and pearls, sitting straight as a lady at tea, blue eyes shining. She's taught me too many lessons to write here. She's modeling how I should gracefully accept my own final days on earth with dignity and gratitude. So caregiving is also care-receiving. We learn from those we care for. Their job is harder, because they are trapped in bodies that won't cooperate anymore. I, at least, can go for a stroll in the sunshine, get away, run if I want. It's harder to receive than to give at the end of life, especially if you spent your life giving.

Therapy

2009-01-09T08:23:00.000-08:00

Mom and I have been watching "In Treatment" on HBO. Somehow, watching various people in crisis, cry, deny, hide, and vent entertains us. We especially like the episodes where the therapist visits his therapist and behaves in ways that resemble his own patients. The show shines a light on how easily we detect denial, fear, and insecurity in others but fail to recognize them in ourselves.

That which I most detest, I am.

It's so much fun to watch other people be crazy. It makes us feel so sane.