On Thoughtfulness

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

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

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...

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

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

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

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

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...

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

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

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:

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:

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:

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:

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

"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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"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

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

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

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

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...

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?

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

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

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

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

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.