The Waiting Game

I feel like this photo was just taken. Isn't that dress still in her closet? She can't have grown so fast. Looking at the photo now, Sam exclaimed, "What was I wearing?" She always was a little fashionista - loved to dress up.

When did my babies start having babies? That's one of those rhetorical questions...I know when, but what I mean is, how did the time move so fast? At what point did my little ones pass from child to parent? And where does that leave me? Sure, I'm the grandmother, but I'm still the Mom and I still feel like my pregnant days were just a fortnight ago, not a decade or two or three.

My pregnant daughters consult their mother-of-three sister-in-law as the authority on what to buy for baby, breastfeeding, car-seats. I'm outdated, ill-informed and old-fashioned when it comes to modern-day mothering guidelines and apparatus. But some things never change - instinct and love. Let those two things guide you and you can't go wrong. Oh! and experience. And that's something I have plenty of.

Stay tuned for future developments. From the looks of her, she can't last long. While I don't know when will be born, I do know when she won't. She will not be born on her due date, February 5th, which is also my daughter Kerry's birthday. My last granddaughter, Julia, was born on her due date back on June 22, which happens to be her cousin Kathryn's birthday. Now what are the odds that I'd have 2 granddaughters in a row born on their due date which also happens to fall on someone else's birthday. Pretty slim, pretty slim.

England ? Italy???

Some of the things I saw in England reminded me of Italy. The rolling green hills with trees few and far between. Reminiscent of the landscape I saw in the Napa region of California, but not here on the east coast where trees are abundant. I mean, geesh, I live in a neighborhood called Greenwich Forest. What does that tell you?

The winding cobbled roadways, the stone facades perched right there at the edge of the street, definitely designed for pedestrian access, not automobiles. I can't help but think of the many who have, over time, stood where I stand, walked where I walk, looked beyond to the rolling hills - they are all there with me and I stand in awe and just try to soak it all in.

I wonder what a week, a month perhaps, alone in one of those towns would do for me. What would I come to realize, about me, about life? It's just a dream, for if I am there, I am not alone...at least not in any lifetime I imagine...Under the Tuscan Sun anyone?. No, if I return it would be with someone, my husband, Lynn, a class of similarly inspired students. I have created a life for myself that surrounds me with people. And I love it, I do. But I often wonder what would happen inside my head were I left alone to my own thoughts, amusement, daily routine and yes, art.

I was lamenting to nina today how my 'year off' had been so very busy so far. She said (wisely, or sarcastically, or both), "You can't control everything, you know." Of course I know that, but I had forgotten. After years on the road, keeping a schedule, running a family, a business, writing books, making art for this publication and that, this collaboration and the other....I have been trying to control things for so long that I have forgotten that there are just some things I cannot control. It's part of that 100 mph lifestyle that led me to forget that.

Just so you know - when I was in England, I did slow down. To about 25 or 30 mph I think. I went to just be there for Lynn and so I was there, just there. It was lovely. My mind was still to wired for me to write or barely read anything, but I relaxed, yes, I was relaxed. I think this year will be the year I learn how to relax again.

I may get to revisit Italy this summer, and gaze upon it with a new perspective. We are only 1/2 way full to making the Art & Soul - Italy trip happen. If you'd like to join me and the other wonderful committed students, we'd love to have you. Besides making mouthwatering painted papers bound together in glorious fabrics and ribbons, we can relax over a bottle of wine (or beer for me. yes, even in Italy), some famous Pienza pecarino cheese, watch the sun set from the city wall... share stories about life, about slowing down, being in the sun and in the moment. It's the first week in June and the weather should be just lovely. Ah...I'm already there. I know it's my year off, but when Glenny asked if I'd like to return and I said, to my husband, "But it's my year off." His response was, "Are you crazy? If you can go - GO!" So if I go, good, if not, that's OK too. There's a reason for everything that happens or not.

My Trip Across the Pond

Paul Simpson met Lynn at Camp America where they were both counselors back in 1975. It was love at first sight.That's something you need when your love spans an ocean.

Paul died suddenly on January 11th, in the middle of playing his Friday night football (soccer) game. I want to die doing what I love. When I heard the news, there was no question in my mind that I had to go. Lynn and Paul's parents are both gone, neither she nor Paul had any sisters, and no English friends can know you and love you the way an American friend of 41 years can. I stayed with Lynn and her two children, Stephanie (21) and Christopher (17) for almost a week, helping with the grief and funeral preparations that were still so fresh and raw in my own heart. It has been a month of loss, of cold and rain and emptiness.

To take her mind off of it all, and to be the kind of gracious hostess that is ingrained in women, Lynn planned a day trip for us on Thursday to Haworth, home to the famous Bronte sisters, authors of Wuthering Heights and Jane Eyre. I just saw Jane Eyre on Masterpiece Theater and I think I'll rent the latest Wuthering Heights from Netflix. Will it stand up to the 1939 version with Laurence Olivier and Merle Oberon? Even in B&W the images and passion in that one had a lasting impression. I see it's going to be released in DVD soon.

But now I've seen the moors in living color, shrouded in the mist and rain England is so famous for. Driving through Yorkshire, the moors and the miles and miles of stone walls that create the patchwork of England, we arrived atop Haworth, described as being, "situated above the Worth Valley amid the bleak Pennine moors." It wasn't bleak to me. It was love at first sight, in spite of the damp, cold rain. We warmed ourselves and filled our stomachs at the Black Bull, - where Branwell Bronte's demise into alcoholism and opium addiction allegedly began. It was lunchtime, but I had a half-pint of ale. I had to, I was in an English pub!

Next we stepped into another world. I know it's a tourist town but I could pretend it was still 1800. And it was made much easier by the fact that only a few tourists braved the weather that day. It was such a welcome relief from the gray skies to enter the Rose Apothecary and see the rows and rows of soap. Yes, soap, in the shape of pies and cupcakes, candy and ice cream.


Next stop, the cemetery behind St Michael's and All Angels' Church. Lynn thought I might find some angels there, but alas, no angels. Only rows and rows of very tall gravestones, many covered in moss, alternating with large flat ones. It was so crowded some had to stand while others could lie in eternity. Standing amongst the gravestones, I felt as if I were in a crowd of ancient bodies standing on the hillside overlooking the moors and waiting to pass into heaven. It was both appropriate and comforting to find myself in this old cemetery 3500 miles from home. I would have liked to linger, even in the cold and damp, but just as the rest of my life has been lately, time here was hurried. We were to meet up back at the pub to warm ourselves and wait for our ride back home, back to the reality of our own lives and losses.

Back in the pub I warmed myself with another 1/2 pint until Steph called to say they were caught in traffic (yes, rush-hour is everywhere) and would be another hour. So this time I ordered a pint. It was comforting to sit and watch the other townsfolk (and yes! their dogs) stop in for a bite or a pint. While I love seeing the famous and the quintessential sites when I travel, I loathe tourists (yes, I know I am one). Sitting in that pub, just the 2 of us and the locals, I was really, really experiencing my idea of England. The suburbs where Lynn lives could be any suburb, anywhere. The cars are smaller there, the houses too, but all made of brick. The traffic the is same as home, and the people look just as tired and downtrodden as the working stiffs back home do in the dead of winter. I know day after day of rain and cold can get you down.

Another highlight was the day we stopped at a local Primary school where's Paul's good friend Eamon was the head teacher (principal). Her had offered to do the program for the funeral service. After we were done, I snuck down the hallway where I heard the sound of children. It was lunch time and they were bursting down the hallways at a full gallop until they saw me, or another adult. Red-haired and freckle-faced. Beaming eyes and rosy cheeks on fair complexions. Oh if only I had the nerve to whip out my camera and capture them. It just seemed inappropriate and those are images I will have to hold in my heart.

I am back now. I have packed up all the artwork and samples for my book and will mail those off today, a huge relief. The manuscript is due next Friday and I expect to be on target for that in spite of everything that has transpired in the last few months. I must get it done even sooner because the next-big-thing in my life is about to transpire. We are counting down the days until little Riley Crawford arrives. The full moon last night did not draw her out. Will the alignment of Jupiter and Venus on Friday, February 1st provide any magic? I am here, camera at the ready.

Grace

Grace is what I need right now. This is a lovely card sent to me by a dear, dear woman I met in New Zealand, Ailsa, neighbor of dear, sweet Wendy. I was moved by the beauty of it, the soft silk/satin fabric, the simple word, Grace inserted behind the ribbon.

Tomorrow I leave for England. This is not the trip to England I thought I would take someday. My dear friend Lynn, the woman I've know for 0ver 40 years, her husband died Friday, doing what he loved - playing soccer (football to those in the UK). My first reaction when I heard the news was, I have to go, there was no question in my mind or my heart. So I am. I will carry Grace with me and strong shoulders, a loving heart and wide open arms.

How Fast Do you Go?

Today I had a thought. My internal motor is always running at max speed. Even when I'm idling, I think my engine runs close to 80 or 90 mph. I think I sleep at 50 mph - no kidding! I wasn't always that way. I used to enjoy just sitting in a nice hot bath, adding more and more hot water until the water heater ran cold. Now, while I adore the feeling of being immersed in a hot bath, I'm usually in & out of there within 5 minutes. I can never sit still long enough for my (rare) nail polish to dry. I'm usually impatient in line at the grocery, although I remind myself that the purpose of standing in line is to teach patience. I just rarely feel laid back - chill, as the kids say. Now I'm not complaining. I do get a lot done. But I just wonder how and when I forgot how to relax. Funny thing is, most people who know me think I'm so relaxed. Well maybe, mentally, maybe on the surface. But inside, I'm revved.

So my question to you is.....how fast is your motor running? Click one of the speeds in the poll above. I'll collect your answers for a week. Maybe I'm not alone.

Sorry - poll over! The top answer was 75-100 mph. More on that later~

A Quick Note

Just a quick note to share some news. The death certificate arrived and the cause of my mother's death was listed as Acute Myeloid Leukemia. Perhaps it was safer, easier, less riskier for the DR to say so after the fact. A bone marrow biopsy would have given them a definitive diagnosis at the time, but at what physical and emotional cost to my mom? Knowing doesn't change anything. I think we all just have a need to label things so we can define, assess and then file them away in their proper place. Being able to name your fear gives you a sense of control over it.

Live by what you believe so fully that your life blossoms, or else purge the fear-and-guilt producing beliefs from your life. When people believe one thing and do something else, they are inviting misery.

Moving On - Looking Forward

I want to deeply, deeply, thank everyone who has sent a comment, whether through the blog or personally. I didn't know the blessing it would be when I started writing, but the community of those who care or who have shared a similar experience made this whole process so much easier for me and my family. Your words and thoughts spread much farther than the internet cable & monitor - right into our hearts. Thank you from the bottom of mine.

Thinking back on my last entry I realized that you may have read that my mother's last words to me were not all that pleasant. I didn't even realize it, because I don't consider them her last words. No. Her last words were hours before when she woke me to say goodbye. That's my memory and that's what I carry in my heart.

I wish Blogger made it easier for me to access emails and contact those of you who responded and opened your own hearts, sharing stories and memories. I have a change to Typepad on my 2008 agenda (along with a lot of other things) for several reasons, but the ability to contact commenters is one of the main reasons. I also hear that it is easier to make comments on a Typepad blog.

The sun is rising here on a most unusually warm day for DC in January - 65 degrees. A hint of spring in the dead of winter. A reminder of new beginnings, birth, growth, life. I may revisit my mothers death from time to time, I think I still have a lot to say about all the different aspects and emotions that are a part of dying. But for now, I have to look forward, not backward. I have a book to finish and a new granddaughter to welcome into the world in a few weeks. Life goes on. And that's a good thing.

Less than a week after my mother was laid to rest at Arlington, we celebrated another ancient ritual - the baby shower. 25 women and 9 under 10 filled my living room with ohhs and ahhs and the traditional, "Isn't that cute." Little Riley Ann Crawford will now arrive fully equipped and in style.

At the end of the day when Samantha sat down, she plopped one of the new cuddle toys on top of her belly. We watched spellbound as Riley wriggled and repositioned herself, causing the toy to move along with her. Just as she was for all the other babies, my own 6 and the 4 great-children that have followed, I know my Mom will be here when Riley arrives. Why she'll even probably make it into the delivery room with this one, quietly hovering over her...Riley's own guardian angel.

At the End

It was the babies who brought her the greatest joy ~ they have that effect on everyone don't they. Everyday as I walked to her hospital room, rode up and down the elevators to the cafeteria and back again, I was sorry that the days are long gone when you could drop in on the Maternity floor to take a look at the fresh babies all lined up in the nursery. You need the joy of birth to counteract the loss that death brings. Fortunately for all of us, babies abound in the Riley family. There's Julia and Kathryn, 6 months and 1-1/2 respectively, and in just one short month, baby girl Riley Crawford will fill our lives.

Kathryn came to visit while my mother still had a flicker of consciousness in her. "Junie?," she said. And I think my mother heard. I know she heard her when she belted out the first line of her newly learned holiday song - "Shosty the NoMan" at the top of her lungs. I caught a raised eyebrow flicker on my mothers face.

Between Monday, the day she became a hospice patient and Wednesday, my mother was on regularly scheduled morphine doses through the IV. It was not the best plan. As the medication wore off, she became more aware and uncomfortable. She began to pull and claw at her hospital gown, throw off her covers. They say the dying do this, yet there is no explanation for it. In my mother's case there was - morphine can cause itching. Once the DR came around, she switched her to Dilaudid, administed on a constant drip to keep her comfortable. She coupled that with regular doses of Atavan to reduce anxiety, and a scopolamine patch behind her earlobe to dry up the secretions in her throat, the death rattle. Her anxiety was the heartbreaking thing. Let me backtrack a bit.

On Wednesday night at 2:30 am my mother woke me by saying, very emphatically, "I have to go now. I have to go now." I took the two steps to her bedside, held her hand and listened, talked, smiled, loved, broke open my heart. Her eyes were sparkling and honestly, there was a glow about her. I felt as if I were talking to an angel. She said something so beautiful and amazing to me at the start that the rest of her words have fallen from my memory. As she spoke I slipped my cell phone out of my pocket and without taking my eyes off of her, texted the word "come" to my sister. Say what you may, but thank god for that technology and my knowledge of how to use it. I could alert and summon my sister and father without ever having to interrupt my mother or leave her bedside. They were there in about 15 minutes. She was still awake and aware, but it was really as if she was speaking from a higher awareness. We were all able to say our goodbyes and express our love. It was a beautiful textbook and tear-jerker movie quality moment. My sister and I told her it was OK to go, but we had to whisper to my father to say those words to her. I know it wasn't OK with him, but he told her it was.

I'd like to say those were her beautiful, final moments, but things rarely happen like they do in the movies. After my mother dozed off, my sister went home to try and get some rest. My father couldn't leave her side, so we sat together. We thought she would really be gone soon and he wanted to be there when she left. As 6am approached my mother became more and more awake and more and more conscious. She began to claw at her hospital gown, stripping herself naked. She was crying and viscious, snarling, "Don't touch me," as I tried to help ease her duress. I stepped out of view and called the emergency number for hospice - nothing ever seems to happen during regular office hours. I went to the nurses station - "Did my mother get her Atavan, her morphine when scheduled?" It was horrible to watch, to live through. My heart broke for my Dad. I don't know whether her tolerance had increased and she needed more medication, or if the nurse just didn't get to her soon enough. There were written orders to give more meds as needed so they did and she calmed down and went back to sleep. That was the last time she was awake or cognizant. Her last fully aware moments were shit.

It is a known fact that hearing is the last thing to go. So when Kathryn sang "Shosty", when I played Amazing Grace and the Christmas Canon for her from my ipod, and later sang Amazing Grace (her favorite) when I forgot the ipod, when each of my 6 children and daughter-in-law, in their private alone time with her, held her hand and said whatever they needed or wanted to say to her, when my sister read prayers or when the hospice chaplain laid his hand upon her forehead and asked for God's blessing, when my Daddy sat there and words did not come....when all of these things happened over the next 6 days, we believe she heard us.

On Christmas Eve, Brooke, the hospice social worker (she's young but she's good they said before we met her, so true, so true), came in for her daily visit. I think everyone was amazed my mother was still hanging on. The hospice DR had said a week ago that she thought it would just be 2 days. So Brooke said to me, "Did you tell your mother your plans for Christmas?" And I had not. I didn't want her to feel left out. Christmas was, after all, her most favorite day of the year. I had spent 2 nights in a row at the hospital so that I could have dinner at my granddaughters home on Christmas Eve and be home for my kids on Christmas morning. So after Brooke left, I sat down and told my mother what her family had planned for Christmas. I told her all the things her family would be doing without her. The dinners, the brunch, the gift exchanging and opening. All the places we would be - without her.

For days we had known the end was near. Her fever, which had been as high as 103 was down to 99. Her blood pressure had fallen at one point to 56/36. Hospice had told us several times to leave her alone for a while. Many people choose to leave when no one is around, so we were told to give her that solitude. All the signs were there except that her breathing, while labored, was consistant and her heart kept on beating, sometimes racing to as high as 156 - the same as an infant in utero. I left at 4:30 pm on Christmas Eve. My sister and father were stopping in before dinner and my sister would be spending the night. Her breathing was more shallow after I left.

At 6:15 on Christmas morning my sister called to tell me that Mommy was gone. She had just stopped breathing. She made it to Christmas. My first thought was, "How poetic of my mother to die on Christmas morning." That became the last line of the eulogy my husband wrote for her.

Part III - Deciding on Hospice

When my mother went back to the ER that 3rd time, Friday, December 14th, word went around, "Mrs. Jackson is back." She must have been an unusual patient for them to remember her. It had only been three weeks, but this is a huge regional hospital with an ER of over 50 treatment spaces, all usually full. Unusual and charming. Even in the worst of circumstances she tried to be her charming self, "I'm so sorry to be bothering you lovely people." They gave her an IV and ran some blood tests. It was comforting to know that she was being seen by people familiar with her medical history. After a few hours it was deemed she could be admitted because she had another (or the same) urinary tract infection. It was 3 am before she finally got settled in a hospital room. This time the 7th floor, a surgical unit. Previous admissions were to the Short Stay Unit. I don't know if it was full this time or if they knew what was coming.

The day we left the skilled nursing facility, as I wheeled my mother back down to her room to get ready to go to the hospital she said, "I'm so lonely." She had just spent an afternoon with me, my daughter and her husband. There are other ways to be lonely I learned. Knowing that, I did not want my mother to spend a night alone in the hospital. She was lonely, helpless and prone to sundowners while in the hospital. Common for the elderly in the unfamilar surroundings of a hospital, one theory concerning sundowners syndrome is that the constant daily mental processes for normal living can become overwhelming for the elderly during evening hours. They simply have too much incoming information and their restricted cognitive abilities become overloaded. The result is a period of irritability and negative thoughts. The mother had become the child, the child, her mother. I now needed to comfort and protect her.

On my first night there, she awoke several times, crying out, "Water!" Who would have heard that cry, that feeble request for the simplest of needs? She was unable to find or even use a call button. Confused and afraid of the dark, I slept with the light on for her. Worse, was watching them try to get her to swallow her pills. Because of her back pain, she was only comfortable lying nearly prone, which made swallowing impossible. Mashed in applesauce, pudding or yogurt just wasn't working for her anymore. She couldn't do it, yet they tried. Like force feeding an infant. It appeared that she was being unreasonable, uncooperative. But she just couldn't. She had pretty much stopped eating everything that last week, unable to tolerate the taste, smell or texture of food. That's an early warning sign, but one we didn't recognize, because in the past, her antibiotics and other medications made her nauseous and killed her appetite - that and institutional food. Pain can do that too. She had been in a not-eating phase before but if you saw her on Thanksgiving, you know she could still enjoy a good meal. She was literally down to skin and bones and starving herself to death. At what point did Mom's behavior and symptoms switch over to impending signs of death? Did we not recognize it because we didn't want to see it, were untrained and unknowledgeable of the process, or had the process been happening for months and we had just come to accept is as the way Mom is, sure she would "come around" again?

My sister and I alternated nights at the hospital, so she was there Monday morning when the doctor asked what we wanted to do for my mother. Many, many, many times, as I watched her die (the word deathwatch kept stomping through my head), I asked myself - did we make the right decision? What if she was hanging on so long because she really didn't want to die now and she was struggling to overcome the pain-relieving medication and starvation we had imposed on her? What if she could rally again and get back to where she was just 3 weeks ago on Thanksgiving? Were we being cruel and inhuman or compassionate and loving? Two days ago I asked my sister exactly what led us to make the DNR decision, to switch from actively trying to heal her to passively sitting by and letting her die?

In her own words, here is how we came to make the hardest decision of our lives. "It is somewhat of a blur but Dr. Weir or Heintz – I can’t remember - said mom probably wouldn’t survive a surgery to fix any additional fractures. She said mom had kidney failure, was dehydrated, urinary tract infection, myelodysplasia syndrome of some sort and pancytopenia, which she said meant she was low on all blood cells and platelets. She mentioned the cirrhosis of liver too. She asked us about the DNR and said that she would still be suffering if they did resuscitate. She said we needed to reinstitute a quality of life for her now … the pain meds … and hospice care. She asked me what I thought was going on and I said I think she might be dying based on some things she has said but doesn’t want to or isn’t ready. Something like that. She agreed and asked me why she might not want to die – if there was anything unresolved. I said I thought she was afraid of death and that she never wanted to talk about it. I also said she has always had an inferiority complex and thought she wasn’t loved but oh was she loved. Daddy was there and added that her relationship with her mother was poor.

I don’t know why I said all of that I just did. She said we were talking a quality of life issue. They could “treat” her but it wouldn’t cure anything. When her heart went into arrhythmia that day they asked us if we wanted to “treat” it but suggested it would prolong the inevitable. Daddy and I … and I guess you agreed to not treat. I asked Daddy today if he remembers any of that conversation. I was afraid perhaps I killed her prematurely and he said no that she was in pain and that they said they couldn’t do a whole lot to help her get better so we made all the right decisions. Its been bothering me … and when you said what did they say to make us stop letting her live I thought again … did I/we make the right decisions? We agreed we didn’t want her in pain … and she didn’t want to swallow any pain or other meds. She said she just wanted them all to leave her alone. I think she was ready. She had said to me something like “I don’t have anymore to give.” She was tired. I miss her."

A Bit of Happiness Comes Our Way

I'm jumping ahead in the "Sad Story" to share a bit of joy that came our way today during my mother's burial service at Arlington National Cemetery. My mother never wanted to talk about death or dying. But long ago she said to us that when she goes, she wants to be buried in a warm wood box. This cherry casket has warm written all over it, even today on this 30 degree (wind chill 20), overcast gray day. The bit of sun that burned through the clouds made it absolutely glow. The service was at 10 am and as we arrived at the grave site, the Netherlands Carillon rang its bells and a jet from National Airport just down the river flew overhead as if in salute. It wasn't a true military service since my mother was not in the service, but spouses of veteran's do receive military pall bearers.

Grave sites are assigned randomly by the cemetery office. By divine chance, my mother's was located next to the roadside, within walking distance of the main entrance gate - easy to find when we return. She lies under a Pin Oak tree and in view of her favorite tree, a magnolia - beautiful and green even in the middle of winter. It is a site we know she might have chosen for herself.

The service was brief. The same Reverend, a WWII ex-POW, like my Dad, who presided over her memorial service, said prayers at her graveside. I felt so intrusive of my own family taking photos during the service, but nina said I would regret it later if I did not. She was right. It was the right thing to do. Looking at them now, I know it was the right thing. In the most personal ones, I captured the emotion and energy of the moment, the beauty of it too. It would be a shame if all we remembered was the sadness, the cold gray day.

But the best part, the most redeeming aspect of this unwanted but inevitable occasion, is that my Mom is buried quite near her best friend, Gerry Cornell. My husband's uncle is there, as is my grandfather. After the service, Buddy went to the office to get the location of his uncle's grave. While there, he asked for Gerry's grave location. Section 39, Row 300. Mom is Section 39, Row 1300. They are even closer now than were the two houses they lived when they met back in Hillmead in the 1950s, two young renegade moms with wee ones.

Part II

My mother's second visit to the ER is when, where and how we began to really understand how sick she was. In the ER you have a whole team of DRs looking at everything - the whole patient. I was there with her that day, she couldn't go it alone. I was not only emotional support, but I was there, just as my sister was on the prior and next admission, to answer the questions correctly. When the intern asked, "How is your walking?" my mother responded, "I walk just fine." In her opinion she now did walk just fine, especially after 6 weeks of rehab. But she failed to mentioned she couldn't take a step without a walker. So I chimed in with that bit of info. At one point he asked if my mother was a heavy drinker. Again, this confused me no end - she had about one drink a year for as long as I've been around. He said her liver showed signs of cirrhosis.

They did an x-ray, then did a CAT scan, but they wouldn't do the MRI that I knew would reveal the new fractures. They admitted her again for another urinary tract infection. In the meantime the new team of doctors, the hospitalists, were overseeing her care. This is when we learned that mom had myelodysplasia (MDS). Her bone marrow wasn't producing enough blood cells. He said it was a pre-cancer, but other DRs considered it a cancer. He's the one who said "Sometimes you just don't want to know." He wanted a bone marrow biopsy. His partner, the hematologist, said it was not necessary, that it was too painful and wouldn't change anything because she obviously wasn't a candidate for a stem cell transplant.

Days went by and finally they did the MRI. Mom was energetic and in good spirits except for the pain. Surgery was scheduled, done and she was discharged the following day after getting the OK from physical and occupational therapy to go back to rehab. She was incensed that she could not go back to her apartment but the therapists thought that with a week in rehab she would be back in her own home again. But this time the pain did not go away and she seemed beaten down by it all. The sparkle had gone from her eyes.

One look at her and you knew she had lost something vital. She had no appetite. Swallowing her many pills had become difficult and traumatizing. Nausea and weakness persisted. Yet each day she struggled out of bed, into the wheelchair and off to therapy where they had her do the simplest of bed exercises. She mustered the energy to go to the dining area for lunch because "friends were waiting for me." She didn't want to disappoint people she had come to know and care for during her last rehab admission. Yet she didn't eat, she just kept them company. My Dad was by her side every day. I was there most days, often with a daughter and/or granddaughter in tow. The babies were really the best medicine at this point. Of course we did not know she was dying.

We knew something was wrong but we didn't know what. We had been waiting for the resident DR all week. Mind you, this was another DR who had taken over her care, her first DR now fighting his own cancer battle. He had never examined her. He examined her chart. Medicine by numbers. On Friday he came strolling in, read the chart and came over to the table where my mom, dad, daughter and I were sitting. He bluntly said her creatinin level wasn't good and she should go to the hospital. Arrgh - the last place she wanted to be again. He said perhaps she was just dehydrated and they could give her fluids by IV there (they cannot at the nursing home). It was 2pm by then and you know how we know better than to go to the ER late in the afternoon. So we hesitated. I wondered why, if all she needed was an IV she had to go the ER route. Isn't that overdoing it and costing the insurance companies money? Isn't that contrary to managed care and all the hullabaloo over skyrocketing medical costs?

Then he looked me in the eye and muttered in a way my parents couldn't hear, "If she doesn't go now, we could have a mortality issue by Monday." Holy shit. My mother is dying? I asked him for a few minutes for us to talk it over and he went to call my sister. He was much more blunt with her (he was reputed to be a good diagnostician but he was HORRIBLE with people), explaining her situation more openly. He also said, "If they admit her..." Turns out if there is nothing they can do for a dying person, they will not admit you to the hospital. So if they wouldn't admit her and she needed an IV to perhaps continue to live, then what would we do? Where's the manual for all of this? This is no time to be figuring it out as we go.

A month ago my sister and I had discussed hiring a Geriatric Care Manager - someone knowledgeable and skilled in navigating these waters. We searched online for one in their area and I stumbled upon a woman named Ann E. O'Neill. We took that as a sign, Annie O'Neill was both my Dad's grandmother and it is also my granddaughter's name. Yet we kept putting it off. Katie had finally called her a couple of days before this "mortality" issue to schedule a meeting but it was too little too late. They could not see mom until the following week.

We agreed that the hospital was really the only option, especially on a Friday afternoon. Try to get medical care, advice or attention on a weekend. 3 o'clock approached and transportation by ambulance was arranged. Katie left work early and came to accompany her to the hospital. I went back home to Maryland wondering if they would even admit her, worried that they would not.