I am a good advocate. So I go head to head with the caregivers, docs, administrators, pharmacists, insurance fiends (I know -- unkind -- but I hate that my MIL is a financial liability and not a human being to them...) That is just one part of the job and I am lucky she has a daughter and two sons. But frankly (and not to be unkind) my husband and his brother are not much help in this area. They let things happen. They stand around and put their hands in their pockets and look at their watches. They fight between themselves. They don't know what to do or say.

Taking care of finances. Taking care of laundry and meds. Taking care of craft supplies and glasses, of jewelry and appointments. Trying to assure her that it is "no problem" and "not a bother" so she won't have yet one more thing to worry about.

To ignore the senile woman in her room who says the same thing all day and night... and who scares my mother-in-law with thoughts of senility and mortality.

Such a stew. Come home. Take care of family. Wait for calls, Make calls.

And I don't even have the emotional burden you do of death. Yet.

I sympathize and look forward to sharing here. This is the first time I've unloaded the above...

Well, another day in the wringer. I swear, managed care has the capability to kill. Here is a list of just a few of the things that went wrong.

1. Took 6 hours to find her a bed. Night nurse holy terror -- could not deal with her meds, nor the fact that she had to be turned carefully with 2 broken ankles and a gastric tube to deal with small bowel obstruction, high blood pressure and exhaustion from pain.

2. Couldn't find her records. Twice.

3. Most aids did not know how to turn her, did not remember to turn her, and let her sit in her feces if we did not rag on them.

4. Tried to xray the wrong part of her body.

5. Never succeeded in getting dermatologist to show up to look at sores on her foot.

6. Took 2 days to get them to deal with sores at all, plus yeast infection.

7. Lost xray orders.

8. Kept giving her heprin (intramuscular blood thinner) even after they stabilized her on coumadin (oral meds) -- stopped when I questioned it.

9. Doctor asked if she could "walk around more" to help the bowel issue. Duh, remember the two broken ankles?

10. Took two days to get them to replace feces covered cast. The stench was horrible.

11. Put her on solid food way too soon -- rebound.

12. Had to fight to get specific discharge orders for nursing home -- which specified skilled care vs. custodial, but insurance co would not approve. Funny thing, patient is responsible for custodial care?

13. Goofed up meds on discharge despite us trying to bring it to their attention.

14. Nursing home lost half of meds for 6 hours. Chart lost again.

Need I say more. To top it off, today I had to deal with redoing her "do not resuscitate" orders cause brother in law was outraged that MIL chose, DNR. Upset her. Upset me. Spent hour crying in nurses station. Said to husband, you and your siblings have to handle this one. So what do they do? Yell at each other.

I am headed for an hour long bubble bath, vapid novel and hopefully won't dream about vomit, bm, casts, stench, white coats and imbecile insurance case managers. The thing that really scares me is what happens to old folks who have to go through this alone?

Please, when my time comes, someone run over me with a truck

11:21pm Feb 12, 1998

She was moved to the rehab wing yesterday... or I should say the skilled nursing wing. Her poor roommate is in terrible shape, hard time breathing, on O2.

We were there when the PT came for the first round. Sounded like a shrill cheerleader and I found her banter demeaning. 78-year-old women may not relate to valley girl...

She was scared to sit up. Scared to try an assisted transfer to the chair. But she did it. We were proud. But the road ahead still looks long...

- 10:05am Feb 24, 1998)

Pacing...when to push, when not to push... that's where we are now. Jane has to decide inside what she wants and what she can do and then we can surround her with the appropriate support. Doing the exercises to regain her strength, fighting the fear of falling again as they try and get her up and walking. These are immense.

She says she does not want to end up bed ridden in a nursing home. But I'm not sure she has decided to get up and walk again. Do you know what I mean?

How much to push....?

- 10:35am Feb 25, 1998

Yesterday was kinda nice. I went out and helped Jane (78) do her exercises (which are very hard -- she is frail, almost no muscle tone, etc -- which is why I believe she broke bones so easily when she fell...) and then I massaged lotion into her legs -- dry nursing home skin. Gave her shoulders a rub while I was lubed up!

She was in a pretty positive mood. I wonder if it is progress or Prozac!! Oh well. I'll take any blessing, no matter the source....

09:28pm Mar 15, 1998

My mother in law moves from the nursing home to a group home tomorrow. 6-8 weeks if she works hard at her exercises. We visited today -- she seemed in good spirits. One day at a time...

12:37am Mar 17, 1998 EST

Move went well. Stupid nursing home forgot to send her meds (even tho we asked and they assured us they would) so at 4:30 we are running around trying to get all new prescriptions (about 14!) before the HMO closed at 5. This is normal. Sigh.

The worse thing is we paid for all the meds they had at the nursing home. And poof, they disappear.

Sheesh.

- 11:04am Mar 17, 1998

Bingo -- It ain't worth it to me. At this point, I really feel I have to choose my battles. Going back to the home isn't on my list. Just breathe deeply, know that my post above was a cathartic and healing experience!!!!

And eat more chocolate

01:50pm Apr 6, 1998 EST

Well the dance with death has started up again. As we sit vigil in the hospital with Jane (my mother in law) and ponder her wishes, the vagaries of high tech medicine, the restorative powers of the body and the uncertainties of everything, I have thought about y'all, about what has come before this post in this topic.

I took Jane to the doctor last Thursday as her UI infection was not responding to oral antibiotics. The dr. sent us to the hospital to try IV antibiotics. While the resident was checking Jane out, he became concerned about internal bGregding. I said, "what internal bGregding" and he said she must have been bGregding for while. Now she had just been to the GI Dr last week and he said nothing about bGregding.

Her blood crit was low -- 16. This also does not happen over night. Her blood was tested a week before, yet no one said anything?

Her coumadin levels (she is on blood thinners for a heart valve problem) were all out of wack and she was not clotting.

By midnight she was in ICU getting whole blood. At 150 she coded and they got her heart beating after 5-10 minutes and intubated her. Eyes were dilated and she was unresponsive. Kidneys shut down. In the morning, thought the worst. But as the day wore on, she woke and recognized us. By Saturday she started putting out urine, though her kidneys were not cleaning the bad stuff out. Yesterday they took her off the vent.

Today she is on oxygen, so weak. Still bleeding somewhere -- they hope to pinpoint that today.

The family has frequent discussions and all have agreed, including Jane (mostly Jane) to a "no code" situation. But should we agree to a feeding tube? Should we agree to invasive procedures to identify the problems, which may be unresolvable. Hour by hour we look at the facts, examine our hearts and minds and confer. What next? We wait. We take it one step at a time. We take turns holding Jane's hand, and she grips us with amazing strength, despite her condition.

We leak from the eyes, tell bad jokes and drink coffee and coke. We try and not look horrified at the medical "stuff" that happens around us, keeping smiles on our faces when her eyes are open.

I think she wants to go.

- 11:38pm Apr 7, 1998 EST

Today they scoped her upper GI -- found nothing. So the bleeding must be on the lower side. GI feeding tube started tonight, plus she actually had a few spoonfuls of a milkshake. Was out of it most of day from scope sedation, but was perking up by early evening. Now gain strength for a few days, see if Kidneys regain function, then try and find out where the internal bleeding is coming from. Worse case on that: tumor. One hurdle after another.

The family has been banned from hanging out at the end of the hall by her room... we are too noisy (true) and we eavesdrop on the docs (true). So either quiet in the room, or way down the hall to the crowded family room.

And so it goes...

- 11:40pm Apr 8, 1998 EST

They moved her today to a "telemetry" unit -- less intensive than CCU. She sat up, took clear liquids but is confused as hell. Weepy. Don't know if it is the stress of ICU or depression, but she kept on saying she wanted to die, all the while looking better by the hour. Such a crazy thing, life...

We let her apartment go today. At best she'll be in an assisted living situation. At worst, her kidneys don't start cleaning up the poisons and we go the hospice route. no one knows at this point.

- 09:27pm Apr 10, 1998

Hey...I'm already confused!!!

Well Jane is improving today. Lordy, she has some strength. Kidneys are pumping out urine and she has dropped 5 pounds in last 2 days...all good signs. Chem levels still off. So it looks like the kidneys will hang in for a bit. Monday they look for the suspected tumor in her lower GI.

Now that she's off the Lasix drip she is starting to be less confused. She had solid food today!

Woo hoo.

We broached the subject of our planned Italy trip (my 40th BD present...4/15-4/30, parents coming to stay with kids, big, long range plans et..) yesterday with doctors and family. Lots of mixed feelings from family. Docs said go, but say goodbye "just in case." We were ready to bag it yesterday, but today hope springs eternal.

As you might imagine, there are lots of issues surrounding this little twist in events.

Had a cool talk with Catholic chaplain about role of women in the Church -- (and turned her on to the book POPE JOAN!!)

Odd things happen along the way, eh?

- 11:32pm Apr 11, 1998

Physically we're preparing to go. Mentally, I'm preparing not to go. My husband is pretty intent on going, but there is still the big test on Monday.

I spent most of the day at the hospital today. Jane was quiet, blue and tired. Not sleeping well. hated when PT and OT came and put her through her paces.

When she finally went to sleep, I finished reading Pope Joan. Read about Rome.

Who knows...one day at a time..., eh?

- 08:35pm Apr 13, 1998 EST

Looks like we got some good news today. They could not find anything in her lower GI (ie tumor) so they are releasing her to a rehab (nursing home) place tomorrow. My husband is out checking out places as I type this.

Her blood levels show some slight improvements in kidney function and for the first time in days, she actually smiled at one of our bad jokes. Very good sign.

So I think we are going!! Whooo heeeeee!

07:35pm May 2, 1998 EST

When we arrived home from Italy we went straight to the nursing home. The social worker was at the door, a look of relief on her face. She had been calling the airport to see if we were stuck in customs (our plane was 45 minutes late) -- and that the priest was ready to start last rites.

We hurried in and this young, bearded man in a velvet shirt and well worn black pants and Birkenstocks was just starting. Jane smiled when she saw Val.

They said she had been waiting all day for him, and had said earlier in the week she was waiting for him before she died. She was glad we went on our trip.

She registered no awareness during the rites. The priest left and the family moved out to the hall to talk. That was Wednesday.

Jane's condition continues to deteriorate. But she hangs on. She has not been "awake" since Thursday afternoon, but we sense she hears us. Her breathing is slow, gurgly and her limbs are puffing up as her kidneys shut down. Her hands shake when the morphine wears down and she clenches fists around cool wash clothes. The family stays with her 24 hours a day, keeping sane by telling stories on each other and finding the most ridiculous things funny.

Greg, the youngest, defends his mother from staff interruptions and needless things. Linda, her eldest, stays strong with lapses of tears. We tell her to drink water so she won't dry out. Val, my husband, inexplicably does cross word puzzles. Odd for someone who is dyslexic. Strange times, death.

I have said goodbye. The body in the bed is not Jane to me, but the barely breathing form of some stranger. I move on and take care of feeding the living, making sure folks take breaks to go shower and walk. We've brought camping mats for floor sleeping and the staff brings coffee when they deliver other patient's trays. The social worker looks in with sympathetic eyes. The nurse says any moment or as long as a week. Everyone wishes it would end.

The waiting, Val said, is like waiting for a baby. Just the other end of the trip. You never know when. You never understand it all, but it happens. On it's own time schedule.

On Thursday, some other more distant family members came in like a circus train, monopolizing what may have been Jane's last lucid moments. Some are pissed and resent their churlishness.

Jane has been laid up since 1/6 and this is their first contact. Not even a card. We tell stories on them after they leave, about one aunt's propensity to lie about her age to the point that she altered the family tree. We tell more stories and eat crackers and beer. And chocolate.

I go home, leaving Val behind, and try and make life "normal" for the kids. They know Nana is dying, but the reality is still too distant. They are wrapped up in their lives as kids and, it seems, have perfectly accepted it all as a fait accompli. One, with self-admitted embarrassment, asked if there was a will.

As we wait, we plan the memorial service. Jane had set aside money for her cremation and burial and it comes with 1 1/2 hours of time in the cemetery meeting room, complete with someone who will speak. Canned Eulogy. I look appalled, but the siblings are relieved. This person will interview them, saving them the need to speak. But the youngest will speak, I am sure, choked up and full of emotion. The one who has lived with his mother for most of his adult life.

We plan a Christmas tree, full of the hand made ornaments Jane was famous for, with enough for everyone to take home. And pictures of Jane as a young woman, as a new mom, as a grandmother.

The air is humid and the sun passes through the clouds with unexpected strength for early May. We sip warm, flat soda and wait. We jump at the ring of the phone.

The cycle struggles to complete itself

08:22pm May 2, 1998

Just got word from Val. Jane just died

11:02pm May 8, 1998

Hmmm... the funeral is tomorrow and I feel like an alien on a strange planet. So much is familiar and so much is foreign. My husband and his sibs sorted "stuff" yesterday and on sib was a trial for the rest. Only one who knew the true stories. Only one who cared about every little thing. Only one to demand possession of all the prize items as rightful. I bite my lip to hear the stories and am thankful I did not have to help. I would have belted the person in question, but I know it is grief and "different strokes for different folks."

I prepare for the wake at our house. I sit here laughing to myself. Cook. Cook. Eat. Eat. The Italian mother comes out in me. I receive flowers for mother's day -- from my mother, bless her heart. I've done nothing yet for her and will be a raincheck to cook her a homemade meal when I am down their way in June... from the heart.

It is gray and the more customary spring chill is back. I planted some annuals in the pots leading up to my house. Jane loved flowers and I would be her gardener each year with my husband, picking out plants for her deck and rockery, and later creating deck baskets to cascade over her little lanai.

I feel guilty and selfish for wanting it over. I admit that I think funerals and wakes are a horrid waste of everything, including human energy. I know many don't share that viewpoint. I warn my husband that I will appear cold and stone like. That's my way. My emotions are channeled like an aquifer. I keep them cool and hidden for if they crack forth, I cannot contain them. I might hit the sib!!!

I hope Jane is "up there" with her husband and her sister, her best friend in life. I hope she is having her favorite drink, eating whatever she damn well wants and her feet never swell again and her hands are always warm.

I hope she is not to chagrined with our squabbles and intolerances

-02:41pm May 9, 1998

Thanks y'all. The writing has also been very therapeutic. These are things that if I said to my family, here and now, might sound morbid, self absorbed or hurtful. They aren't intended that way at all, but as you all noted, we do weird things, our antenna are tilted just off center so that we interpret things in odd and unintended ways. We are off balance in all senses.

So thanks for the space, the support, this quiet corner for rumination.

It's raining today. We rigged a tarp out back for the smokers. The house is clean and the kids are absorbed in a Nintendo game we rented for keeping kids absorbed. Time to go clean veggies and do a few more things before we leave.

I'll save some chocolates for y'all

12:27pm May 10, 1998 EST

Well, I thought I'd share the penultimate chapter of this cycle, as we work to bring it full circle.

With a sign of relief, it went well. We were the first to arrive at the funeral home (laden with three full-blooming red rhodies -- there had been red rhodies outside of the nursing home window where Jane died, and her daughter was so taken by them, they became a beautiful image for her).

I was startled at how nice the place was, peaceful, understated. The chapel looked out on a little garden courtyard where there was a beautiful, very life-like bronze statue of an elderly couple, enjoying each other's presence. There was even a bronze bird on the path to their bronze bench, ready to look for bronze crumbs.

Despite the clouds, the room was light. An old family friend played the organ, but with strange choices of music. She waved from the balcony with her usual harsh smile. It had been a few years since I've seen her, and she reminded me that we are all moving forward in time. Her daughter startled me. She had become a young woman.

I fussed with the rhodies and the kids, in their spanking new Dockers and collared shirts, (still with grubby sneakers) cavorted. This was not death to them, but some variant of church/obligation and mystery. Their buoyancy was a gift to the day.

First to arrive was a small, elderly woman bedecked with a ribbon with many small pins of recognition. This must be one of the "girls" from Jane's Fleet Reserve group -- a group that had bonded tightly since WWII, many of them who's husbands were Pearl Harbor survivors, as was Jane's husband, Lawrence "Bob" White. She was proud of her ribbon and pins and we welcomed her.

Soon the relatives-whose-names-I-can-never-remember came, and the siblings and their families and soon, awkward and unsure of my role, I began taking coats like an usher, smiling in pseudo-recognition, thanking, nodding and grabbing my kids whenever I could for a touch or a hug, keeping an eye on my husband.

Dressed up, he looked wonderful. He kept his composure and smiled and flowed with the day with such grace. He was amazing. The relatives all commented how he and his brother were dressed up. Weddings and funerals. We all laughed. Weddings, funerals and sometimes births. The intersections for families that have lost all but the very center of gravity in our spread out, hurry-up culture. Points of acquiescence.

At about 2:05 we went in and sat down, family in front. I noticed square boxes of Kleenex in most rows but ours. I sent my son to fetch one from across the way. On the other side of the aisle, everyone sat in the back, leaving the first 8 rows empty and silent. If it were a boat, we'd be out of balance and tip over.

Pastor-somebody, with long grey hair, beard and light grey suit welcomed us and tried to read the words and ideas the family had provided in a briefing earlier in the week. I was grateful Val had taken the effort to write some stuff out. The Pastor read that verbatim and it was beautiful. The organist played a bouncy version of "gather at the river" for an interlude. I felt like a merry go round. When does the revival start?

He talked some more, thanking, inviting folks up. Just one had it in her to get up and talk, the past president of Fleet Reserve, in her white polyester pantsuit uniform and brown hair that had been assisted by more than nature. Sweet and teary eyed. She was beautiful. A plump angel to sing a song of friendship and loyalty. She made us smile.

None of the family could melt the cement that had us in our seats, jaws clenched, Kleenexs in our fists. My youngest started blowing his nose (had a spring cold) and everyone thought he was crying and the tears started to leak from our eyes. My husband examined my hand in his hand, as if he was seeing it for the first time, running his fingers over my fingertips, exploring. I stared at the windows above the front area and thought about glass. My nephew, 8, kicked his legs in the pew and I remembered my mother in church, placing a hand upon my infernally bouncing legs, tapping out my impatience, distraction or just ancy energy.

Like clockwork and a planned agenda, the ceremony ended precisely 20 minutes later, with the funeral director coming to lead the family out first. In the lobby, we had set up a miniature Christmas tree and about 100 of the Christmas ornaments Jane was famous for making, so that everyone could chose one and take home as a remembrance. For some, this brought smiles of recognition and happiness. For one friend of my Husband and his brother, it was too much. He went back into the chapel to settle down.

Needlepoint scotties, little airplanes, candy canes and cacti, each brightly colored and topped with a loop of fishing line. She would work on these year round, making one for every child and grandchild and extras to give to the children's hospital craft shop for sale. Each year something new. She was working on a set of western themes before she fell in January. Little cowboys, ten gallon hats, cows.

We milled about, unsure if we were supposed to do a reception line or what. But people just came out, got coffee and snacks, chatted. The atmosphere uncinched a notch. Ties loosened. Breathing a little easier. The kids started to run around and giggled. We smiled and made nice with sincerity. The old pictures of Jane and her family gave one a place to go stare and be occupied if they did not want to talk.

My kids and my friends kids came up to me, tugging me down to whisper in my ear "Did you see that old lady go over and pile a plate high with cookies, then leave???" They all thought that was hysterical. Her pockets were stuffed with ornaments for the other "girls" in Fleet Reserve. It was their regular meeting day, so most could not come.

The relatives chattered. All in all about half of the 55 guests hung around, then followed us over to my house. I left a little early to crank out the coffee, stack the plates and fill the table. Lots of good food. The necessary distraction for me, feeding people.

Jane's cousin came first, a loyal friend to Jane till the very end, with her son. She sat in my living room and unwound like a spring, slowly then fast.

Then came the cousin and second cousins from Portland, the second cousins from Seattle, the great aunt who always fibbed about her age and her pleasant husband who ate pistachios, and fished for missing shells between the couch cushions, and worked to remember all the names of the kids, the friends of the kids and their spouses. Last came the brother -- who had all the alcohol -- about 45 minutes after everyone else. He started the party in the parking lot at the funeral home.

My son asked me about drunk driving and why all those people went outside to smoke. I said this side of the family has a long history of alcohol and tobacco and "we'll talk about it later." He worried that some might drive drunk. He tsked tsked with the judgement only a 13-year-old can summons.

Inside, the older relatives and the non-smokers, outside, under a jerry-rigged tarp (but it DID stop raining) the smokers and heavier drinkers. Bar on the picnic table, elegantly positioned next to the compost pile. I wondered if it stunk.

Good food. We relaxed. I was thankful to keep busy playing hostess.

About 7:30, most had left. Just brother in law and cousins and a few friends. We turned em out at 8pm.

It was over.

It went better than any of us expected.

One more step to go.

Internment on Tuesday.