Monday, December 31, 2007

Part I of a Long Story with a Sad Ending

I still don't know why she died, but I do know how she died. One of my father's ex-POW friends asked what she died of and I had to say, "I don't really know." It wasn't until she checked into the ER for the 3rd time in as many months, on December 14th, that we really knew how sick she was. It all unfolded like a series of misfortunate events, a victim of specialized medicine. Everyone treated a part and no one treated the whole. It was just during this last year that my sister and I took over taking them to the doctors. My father's vision had been failing for a while and he called upon me (I lived a block away) more and more often to drive them places, until finally he gave up altogether (thank god).

My sister and I had watched them decline for some time. in 2005 we started the discussion with them about moving to an independent living facility. But giving up your home, your independence is hard. We thought it would offer them community, safety, 3 squares a day and easier, wheelchair friendly living. We also naively assumed that they were on top of their own medical care - asking the right questions, understanding the answers, making the right decisions. Not until this year, when I sat in the examining room with my mother, listening to her describe her ailments to her doctors did I realize that she wasn't giving the right answers, emphasizing the right information. Imagine my shock when I took her for her every-6-weeks shot and walked through the door labeled Oncology Hematology Associates, a place she had been referred to years ago for her anemia. Surely if she had cancer someone would have said something. She had been going for 4 years, so no way she could have cancer without me knowing. When I asked the DR "What exactly is her diagnosis?" he said, "She doesn't make enough blood cells." Was that the elementary school answer or was I invading doctor-patient confidentiality? But I digress...

So here it is March and they are preparing to move. They need a physical before they can move in and her seldom seen GP does a cursory exam, gives her passing grades and they move in. They moved from MD to VA, and we wanted them to use the doctors associated with their facility, the ones who held office hours at that location. So she sees a new DR, but only for a cursory physical and then later for a specific ailment - back pain. He prescribes a lidocaine patch - didn't even do a urine culture. Back pain persists to excruciating, he sends her to the hospital. My sister takes her that afternoon, which drags on long into the night until they have a bed and can admit her. The ER discovers a urinary tract infection, among other things. This is back in October. After a week of tests, they finally order the MRI that shows several small spinal vertebrae fractures. We knew that's what it was because she had the same problem and surgery a year or two ago, different hospital, different DR, but they had to find out the slow, insurance-friendly way. Call in the neurosurgeon, he repairs them. After surgery she has an irregular heartbeat so she spends a few days in the CCU until that is stabilized and she goes home pain free.

She wasn't deemed healthy enough to return to her independent living apartment and had to go to the skilled nursing portion of their facility. She HATED it. You would too - pretty much a semi-private hospital room. And they asked her to exercise. Well they kept at her and she got sassy enough that her attitude was, "I'll show them! They want 10 reps, I'll do 12! And as fast as I can." Six week she spent there, endearing herself to the staff and the therapists. Six weeks of the best exercise (and new anti-depressant) and she was a new woman. We were SO, SO very proud of her. She walked that walker up and down the hallways, walked herself right out of there and back to her apartment the day before Thanksgiving.

Sitting on Daddy's LapIf you are a regular reader of the blog, you know how wonderful Thanksgiving was. The Monday after, I took her to her eye DR appointment and then to her favorite place ~ Nordstrom. She said she needed some new eye shadow. I watched as the make-up sales woman gave her a mini-makeover. Wheeled her around until she found just the right t-shirts, not too long, high neckline, with a soft and loose fit. She bought 4! Even Dad got in on it, buying the new shoes that she had been begging (nagging) him to get for so long. It was perfect, except for that niggling pain in her back. By Thursday she decided that she needed to see a DR. She called, he said go to the emergency room. They knew the drill by now and decided to wait until morning. There's nothing worse than spending all night in the ER - why not start fresh in the morning? Looking back, I'm amazed she could endure the pain that long, but it was her decision.

I go in to the emergency room and while waiting for a wheelchair to bring her in, tell them her name and that her records should be on file, she was just in for the same thing. The ER clerk says, "Kidney failure? That's what it says here." I say, noooo, back pain. Barbed question marks start popping out of my head....what's going on???? Oh, and did I say her attending physician had to turn over her care to a new doctor because he had a medical problem of his own - prostate cancer? be continued~

Farewell 2007

I cannot end the year on a sad note. Know that sadness does not hang over our house as we end the year celebrating my mother's life. We had a most lovely service for my mother on Saturday. I spent 2 days compiling the music, framing photos and designing and printing the program, while my husband worked on the eulogy. We wanted a very personal service that reflected my mother and the family she created. On Wednesday she will be laid to rest at Arlington National Cemetery - buried among heroes, soldiers and their spouses, right there near Bobby and John F. Kennedy - 2 men she adored. One of our family memories was seeing Bobby, a few of his children and Caroline Kennedy at the local movie theater after JFK died. Two families doing family things.

The funeral director was quite impressed that we had done so much, down to the CDs of music. He obviously didn't know June Jackson's daughters! I think she was my first teacher of the saying, "God is in the details." There was no way I was going to let tradition and grief dictate how my mother was remembered. She taught us style, so style it was.

From reading your comments and all the personal emails, I know that so many of you have been through the very same thing - losing your mother, or someone equally loved. I know death happens every day, every where and not always with warning and never when you are ready. I also now know that not everyone talks about it. A whole series of events is summed up in the phrase "My mother died." We relate the birth of a baby in minute detail, often accompanied by photographs or film, from the first twinge of a contraction to the first cry and breath of air, the pink rosebud mouth and ten tiny fingers and toes. Yet we keep secret or speak in hushed tones about the final days, the mounting sadness, the last breath and goodbye.

My sister and I searched the internet for answers, signs, guidance and advice on how to walk these final steps with her, how to understand what was happening. There was some help out there and Capital Hospice proved to be most comforting and informative. Yet just as each individual is different, so is their death. Babies may pick their time to arrive, but once they set the wheels in motion, for most, it's pretty standard. Not so for the dying.

As I have said before, this blog has become my journal. I write it for me. If you choose to read it, so be it. It is in my nature to share what I know. It's how I make sense of things and if you are like me, then you too want to know. We're all going to face it someday, so perhaps some word I say, some thoughts I share will be of help to you. I am going to tell you about the pain and beauty of dying, the things we did for her and the things we did for us. The hard part and the beautiful. It is a joyeous story, yet there will be tears along the way. Too much to tell in one sitting. I'll be back.

Tuesday, December 25, 2007

Christmas Morning

June Elisabeth Jackson
9/9/25 ~ 12/25/07

Thursday, December 20, 2007

Do Not Go Gentle

For those of you that have sent prayers and kind loving words, and yes, well for those of you who have not written but carry us in your thoughts, every kind thought, every whispered prayer helps. I want to let you know that my mother has been in hospice care since Monday. We try to keep her comfortable but that also means she can no longer speak to us. Everyone had the opportunity to say goodbye earlier in the week before she needed constant sedation. My sister and I alternate spending the night. She is never alone. It is sad. It is beautiful. It is emotionlly trying and yet a magnificant learning and loving experience for my children, myself, my sister and Dad.
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Wednesday, December 12, 2007

Christmas Canon

My mother is not doing well.
My Christmas wish is for you to send prayers and positive energy her way.

Saturday, December 08, 2007

Remembering Pollyanna

The snow that fell on Wednesday will be gone by the end of the day with the light rain that is falling and the high 40s temperatures. As I look outside the window, I can see both white and green patches. The yin and yang of a winter that will soon be upon us. I only really love snow when I have nowhere to go, when I can watch as each infinitesimally small flake joins with others to create and inch, a foot, a blizzard. But Wednesday, I had somewhere to go. My Mom was having back surgery on her recently fractured vertebrae - her third such surgery. The good thing about this hospitalization is that we do now know what is causing the fractures and the recurrent infections. The hematologists decided against a bone marrow biopsy. Her primary care DR wanted it, but in the end it was determined that a definitive answer would not change her course of care. Final diagnosis: Myelodysplastic Syndrome (MDS) with bone marrow failure. It's cancer or it's pre-cancer, depending on who you talk to. MDS disorders have been defined by their predilection to evolve into acute myeloid leukemias (AML), yet not all cases terminate in leukemia. It's something she has had and that has been treated and monitored for 4 years. Obviously it has progressed so they are increasing her injection from every 6 weeks to every two and adding more calcium to prevent the fractures. Symptoms of the disease are kidney failure, infection, bleeding, bruising, anemia, the fractures, fatigue and weakness.

The good news is that, as of yesterday, she is now back in the skilled nursing center undergoing rehab while she gets her strength back and will be back with Dad in independant living in a week or so. It was only 5 days after she was discharged from the skilled nursing center (remember Thanksgiving) that she fractured her back and pain forced her back into the hospital. We are looking forward to a pain-free, energetic family Christmas, a joyous ending to a very full year.

I subscribe to a wonderful daily newsletter, 365 Days of Coaching. Last Sunday, the message was to list our 100 best moments of the year. "Taking time to acknowledge our accomplishments for the year is a great way to appreciate all the hard work we have put into making the year what it was. We just don't take enough time to recognize our accomplishments and give ourselves credit for what we do. By acknowledging what we have accomplished, we give ourselves the time to be grateful for our successes. An attitude of gratitude is a wonderful way to end the year and begin the new." I can easily rattle off 20 or 30 right now. But the big lessons and discoveries begin when you reach down deep for #45, then 76 and finally, 100. It's the perfect summary for the year and just the right entry for my juicy new journal. What about a best moments journal for 2008, an on-going record? I bet I could top 100 easily if I keep track of them as they happen.

It is easy to dwell on the difficult times, to share in another's sorrow or misfortune. We are caring and compassionate beings. It is all too easy to disregard, dismiss or trivialize moments of happiness. Many of us tend to think of happiness as something big, like winning the lottery, the birth of a child, getting an A on a test, a promotion, or acceptance into a juried show. That's more a feeling of exhilaration. As I have aged, (and fortunately, with that comes wisdom), I have discovered that happiness is (or can be) a daily state of living. Happiness comes from making the best of each day, each situation. It's an attitude, an approach to life. It's the greatest gift my father ever gave me - to look for the positive in every situation, to be grateful for the good that still exists in the midst of trouble or turmoil.

Remember Pollyanna? I saw that movie at a very impressionable age. But what a good and lasting impression it was. My life is the Glad Game. I've noticed it's my first reaction to all sorts of bad news or setbacks. The Glad Game, an attitude of gratitude. Call it what you want, but remaining positive and optimistic steers you through any situation, no matter how dark the night, how rough and choppy the waters get.
Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace, and gratitude. ~ Denis Waitley

This is my true religion: arbitrary moments of nearly painful happiness for a life I feel privileged to lead. ~ Elizabeth Berg

Monday, December 03, 2007

Some Days Are Like That

something I'm working on for my next bookThe wind has certainly stirred things up around here today. Before 11am I had dodged both a fallen wire strung across the road, and a big overstuffed bag of leaves - big, like Santa's sack big - rolling around the Beltway after falling off a truck. Dodged that and the car that swerved to miss it too. Then I get to the hospital where my Mom has returned and had to accost the DR as he tried to dodge me. Is it too much to ask what they are planning for my mother? Two days ago they said she may have multiple myeloma, a form of blood cancer. Naturally we are concerned. He said he has asked a hematologist to order a bone marrow biopsy to confirm the diagnosis, "but sometimes it's bad and you really don't want to know." Well YES, I do! And the fractures in her vertebrae, when will someone do some surgery on that.....that's why she came to the hospital in excruciating pain last Friday. Apparently, thanks to Google, not the doctors, we have learned that the fractures are caused by the disease. I now feel like doctors are the new politicians, they answer questions without saying anything for fear of ???whatever. Can you tell I'm frustrated?

And then to top it off, I thought I lost my debit/credit card and $40. Except that someone used the card this afternoon (I have online banking and was monitoring it while I looked for it.) So I reported that. And the wind still blows. Sorry to be such a downer, I just need to vent. In between all the drama and ill wind, I am working to complete the artwork for my next book. It's still hush, hush but I think you'll like it. There's a sneak preview above. The little reed, bending to the force of the wind, soon stood upright again when the storm had passed over. ~ Aesop