LIVING

5/27/13:  Memorial Day. We began the day with phone calls to favorite veterans, including my mom, Evelyn, who has just returned from her dream cruise to Norway. "Thank you for your service," we tell them. It's a tradition here and we believe it's important. We also speak remembrances of those veterans who are no longer with us, including our Dads.

We've never been big Memorial Day/Cookout enthusiasts. When the hub was still working, it was a day at the office. Or maybe, an extra day at the cottage.

Today is, alas, typical of Memorial Days past in that it's cloudy, rainy, and cold. More than once, the kids brought friends to the lake for the weekend, only to find that it was way too cold to go tubing. We have a photo of four friends, determined to enjoy the day, running off the pier and jumping into the lake, holding hands. With the splash, the hands unlocked as they sped toward shore and waiting towels.

And here, 4 days into Hospice, our goal is to live. That is our instruction. That is what pain medication should allow. We will fill our days with family, friends, neighborhood parties, and walks. We will find humor and share laughter. We will continue to thank God for His blessings, for the answers to prayer, for a lessening of pain.

I must say, however, that our living is affected by those wonderful medications that help Mike enjoy this time. As I have had little experience with folks on drugs, I can't help but notice some behaviors that weren't normal a while ago. God continues to give me insight that these are drug related and I can usually laugh; when that's not possible, I can file it under drug-related.

We were discussing something the other morning. I don't remember but as always, these discussions are golden. Then Mike said, "You know, this is like gutting a shark. You cut it down the middle, clean out all of the guts, sew it back together and hope it works."

Pause. "That didn't make any sense at all, did it?"

I smiled.

This morning, in the middle of a really good point, he said, "And that's where the income level is."  Oh.

I live with a really smart, well-read man, who has a large store of ideas, references, and illustrations. These days, his brain goes random shopping and pulls out the occasional "Whaaaaaaa?"

We laugh. We gotta.

Then, there are the jerks. When he's asleep, his body with jump and jerk every once in a while. He shutters but does not wake up. If we're holding hands....we do this a lot...it will wake me up.

And, occasionally, he will go off. Like last night. Middle of the night. Following Hospice instructions, I squirted some liquid medicine into his mouth.

EXPLODE: Don't you EVER do that again. Swear it. Go get me something to drink!

And when I did, he swished and spit out the medicine. (As he had time to yell, I'm thinking that a lot of liquid got in) Again the demand for my promise.

(Sure. Ok.) I climbed back into bed, turned over and went to sleep.

During the hospital stay, Mike called the music man at the church and resigned from the band. He believed it was time. Yesterday, Mike called him back and he's back on. He'll get to join his music friends, serving the Lord at Oakbrook Church.

Mike and son have gone shooting a lot. They went clothes shopping. They went something-else-shopping. And now our son will head back home. This last week has been joyful.

We will be back and forth to the lake. We have a full day of appointments on Thursday, including Root Day for me. And so we will be living.

As, actually, we are dying.

Moving into Hospice

Our decision to move into hospice came slowly, after gentle discussions over the course of days.

You can go into hospice when they determine that you have 6 months to live. It means that your health care team changes to folks who are specially trained to care for terminally ill patients. Friends who have experienced these services tell you things like, "It's wonderful." "They do everything." Everyone knows about hospice, right?

Well, no, not everyone. Not the health care workers in the hospital. As we were getting ready to leave the hospital, the nurse came to disconnect this cumbersome two-box unit, handing from a pole on wheels, that beeped and blinked at times. Mike said something about being tied to a bed. "Oh no," she said, trying to be helpful. "As long as you can wheel this around, you can move around your house, you can go outside." We knew that this box was our life-line to the pain-management drugs that would make the next chapter tolerable.

The several days in the hospital had worn us out. Mike looked tired and drawn. He was really blue and with our decision, he started saying goodbye to everybody and anybody. "I want a few days with my son and then I'm ready to go." And, to be honest, from the way he looked, I thought he might be on to something.

When we got home...hospice was supposed to already be there but someone at the hospital had not yet told them we were discharged...we waited for the workers to come. The RN Hospice nurse entered, breezed around the room, retrieving this and that from a brown paper bag. Black marker BOLINGER branded the bag as ours. The last thing she took out was a small box about the size of a Walkman (google it) with tubes and wires sprouting out of it.

"Where's the pump?" Mike asked.
"This is it," said the nurse.
"You're kidding, that's it?" he asked.
"Yes, it's a nice, little compact unit."

The hub began to see that he could be mobile, go outside, go for a drive, go to the lake.

His mood began to rise. We got our instructions. We practiced. We settled in for the evening.

 He has the main pump and a little emergency pump operated by a button. This give him one blast every 15 minutes, no matter how many times he presses the button. Our goal is to not need the button. BUT we should use it as we need. If the nurse finds that he is accessing it a lot, she will increase the level of the main unit

About 7, his pain began to spike. Even with button pushes, the pain increased. So, we called the on-call nurse who drove from Wabash (60 miles) to our home. She floated over to the bed, checked, charted, explained, called, and worked her magic. She increased the main pump.

Then, she reviewed with me what we need to do. A repeated part of instructions is some version of this: Call us, any time. We will come. Any time. We want you to be comfortable and to enjoy life.

To bed at 10 PM; perchance to sleep?

3:30 AM.....the hub awakened, for the first time. 5 1/2 hours of uninterrupted sleep. He has not slept like that for 2 years. He was so excited he woke me up, I who was also enjoying a longer sleep. I rolled over and grabbed several more hours. And so did he.

Today, it's like we've been new baptized. Refreshed. Full of energy.

I guess an up side of feeling miserable is that the contrast is so startling.

We've had many visitors, including one of my international students with his mother. He wanted to say good bye, and give me a gift and a hug. Mom thanked me for taking her son into my heart. (What a job I have!)

The Hub and the Son went shooting and then they took the car out for a spin. Today, life is as sunny as the sky.

We know that so many of you pray for us. Today, God gave us a wonderful day.

May 23, 2013

Home with Hospice.

A GLORIOUS DAY

We got home from the hospital on Saturday. We had our kinda-complicated schedule in hand. Hub was a bit concerned that as I lack a nursing degree, I would not be able to follow it.

Pshaw! Teachers work time schedules really well. I got out my index cards and colored sharpies. I wrote IDs on the prescription caps. The ‘take at meals’ parked at the place where we eat. The others nuzzle together in a large ramekin in the bathroom. We began to work the schedule.

Saturday night was rocky and Sunday was not much better but I stood over him and made him take what he needed to take. We ran to the grocery store to load up on things that looked good.

Then came Monday. After breakfast (and pills), we commenced on what would be  A Glorious Day.

We filled it with all sorts of things we love to do. We drove to the lumber yard in Russiaville to purchase some special planks for a special project. That place emits an aroma of cut lumber  that wafts for a mile on a windy day. Mike has become a regular over that past years….they often purchase and/or save special pieces for him and his projects.

With wood in the truck bed, we drove to our friend’s house to see his race car. This is the guy who asked Mike to restore his Lotus, another project from the last few years. 

Then, we drove to the Windmill Grill, a favorite family restaurant. Their soup of the day was a thick rosemary chicken with dumplings. Mike took one spoon and smiled. “This is really good.”

We ended up at home, in time for a quick afternoon nap. The sky was blue; the clouds looked like pulled cotton balls. I know this because Mike spread out a blanket on the yard, and we lay down, side-by-side, and watched the sky. For quite a long time. We used to do this at Wheaton College on what was called Front Campus. 

Indiana exotica

 Dinner was quick (with pills), because our next door neighbor, Mike, was waiting in the driveway. In his silver Miata. Top down. The Mikes took off to the west end of the county. Out there, we’ve heard tales of a pair of Bald Eagles. They are now the parents of a head-bouncing eaglet. Enthusiasts can stand about 300 yards away with binoculars and watch the family. And that’s what the boys did.

The drive back could follow several routes but with that little sports car, they chose the winding-through-the-woods route. Mike arrived home pink of cheek and ear-to-ear smile.

And then time for sleep. (and pills)

Tuesday was less good. We are back in the hospital as the doctors are trying to figure out some gastric bleeding. A rocky night in a room with a lousy view. However, many friends came to call. Many more called. One special call was God’s gracious answer to so many prayers. That call makes up for many medical aggravations.

So, it’s Wednesday and we’re waiting for the GI doctor. He’s going to work us in. We will then wait for decisions and treatment. 

a day to remember

And it’s raining.

BUT, Monday was one for the record books: A Glorious Day.

A LONG Week

We pledged to keep you updated so here’s an update. Further down, I’ve posted a picture of Mike, taken last Saturday. It’s waaaaaaaaaaaaaaaay down at the bottom and not for the fainthearted.

As this disease progresses, we’ve known that one reality is constant pain. The pain comes in the center of the body so it radiates out to all parts. With every bit of “it’s stable,” has come a need to bump up medications for pain.

And although Mike is not in a clinical trial, he is a bit of an experiment….not many people have survived this long with this disease.

The disease-related diabetes, the medication-related indigestion, the over-the-counter remedies added to those hefty prescriptions……it’s going to make quite the tale in some medical journal someday. But, for now, it’s our life and----let’s be straight here---our dying and death.

Mike had been uncomfortable last weekend and by Monday night, he was doubled over in pain. He called his doctor and she told him to get to the hospital. Unlike other trips we made on our own, this time she called ahead and they were waiting for him.

He was whisked up to ‘his room,’ where IV machines stood at the ready. And the liquid miracles commenced. There would be much tweaking in the following days. He had announced that, no matter what, he would be going home on Friday. Of course, he had ordered me to school. He sent a message that he was ‘admitted’ but that I was NOT to leave school.  

The man I married.

The teacher in me steps forward when I’m at school. Mindful that something may be brewing across town, I duplicated the final exams and filled in the grading keys. I looked at a stack of papers, still ungraded, and commenced on a less-that-strident reading. (Strident reading can pick up those who copy….at this point, at the end of the semester, oh well.) 

By 2:30, I was at his side, getting updates and so forth. A team of angels fluttered around him, measuring, charting, data-entering. His doctor kept a learned eye on each increase/decrease/output/input and etc.

The goal was to translate liquid calculations into oral medications so he could go home. They started that on Wednesday. It was rocky. He got shaky. Let’s try this….hmmmmm….ok, try that…..

I DID get to watch the teamwork in action as his caregivers discussed back and forth, communicated over to that department, back to this desk, and so forth.

Friday was a make-up snow day for KHS so, no school for me. I was by Mike’s side at 7 AM.  He had had a fitful night and when Doctor Moore came in, she said that she knew he wanted to go home and she’d send him home but she’d feel better if he stayed one more day.

When I get a vote, even a silent one, I defer to the doctor. He stayed one more day. The oral meds worked well and we got ready to go home on Saturday.

I can find little to complain about, when folks are caring for my husband. Really, I could sense an atmosphere of caring. Even the dietary aide (a job with which I’m familiar) wore a big smile and called the hub Mr. Mike. His job, planning Mike’s menu, has gone high tech.

 (When I had this job, we used paper menus; patients had two choices, both grim and both featuring strained squash.)

However, at least two nurses said and did things that caused more concern that we need. I’ll give them grace and judge that they did not realize that sick people who are predisposed to prepare for the worst look for any grimace, any eyebrow raise, any mumble as a sign of impending doom.

One lady chatted with the hub in the early hours of one day. When he said that his doctor told him that, in the end, he will not experience pain, she said something like, “Well, we certainly try. It doesn’t always work out that way.”

I realize this is third hand and he’s taking a lot of drugs; he may have infused her comments. But when he reported this to me, I came back with my usual. “Mike!!! What does your doctor say?”

He then repeated what Dr. Moore had told him.

“OK, then. SHE’S a doctor. She’s YOUR doctor. You trust her, don’t you?”

(yes)

“Well then!” 

Finis

I was witness to the other incident. On Saturday morning, as we are finally, really, going to go home, his nurse came in and I asked her if he had a good night.

“Believe me, I checked on him all through the night. I’ve never known of anyone taking this much morphine. It’s 3 times, at least, the maximum.  I checked to make sure he was still breathing.”

She smiled.

She left.

Oh, fine, thinks me. (yes, I know) 

Do I have to monitor him all through the night???

end of a long week

So, when Doctor Moore checked in, I asked her. She was flummoxed. Almost:

“Only one nurse up here has any experience with patients like Mike. They usually deal with pain from gall stone or kidney stones. This is different. You do not need to check his breathing during the night.”

Thanks.

His doctor is also an excellent teacher. 

So home we went and home we are. Mike’s new medication regime is, well, new. I wrote it all down. I may even make a spreadsheet. But we’re good today.

For today. And thanks for your continued prayers and support.

Ah! Emily!

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Emily Dickinson

One Grocery Sack

My secretary, late in the day, buzzed me on the intercom and asked, “Do you want a late appointment?  It’s a mother and daughter and they seem very panicky.”

“No.  Not really, but if they’re upset, it might be interesting.  I’ll do it.”    It had been a long day and I was looking forward to a peaceful dinner, maybe followed by a motorcycle ride in the country.  Little did I know what was to develop out of this late meeting.

At 6pm my secretary ushered two ladies into my office.  The older was about sixty and identified herself as the other lady’s mother.  The daughter looked to be about 35 years old.  They both sat down and I immediately noticed that the daughter appeared to be extremely upset, as she was shaking and continually scrunching up a handkerchief in her hand. She was blotting away tears. Her mother sat up straight in her chair, leaned over my desk and said, “We need a lawyer, I think.  We need some really good legal advice for sure.  Can you help us?”

“I don’t know, yet.  Why don’t you tell me what the problem is, I’ll take some notes, and we will go from there?”  And so, for the next hour they told me their story.

It seems that the daughter, whom I shall call Sue, and her husband, had been trying to make a baby without success, despite all the assistance that modern fertility medicine could offer.  Daughter’s unfortunate plight had been the topic of discussion on numerous occasions by Sue’s mother, who I shall call Sally, and all those who worked in near proximity to Sally on the line at Delphi Electronics.  

One day, a coworker of Sally’s asked if Sue still wanted a baby.  Sally replied in the affirmative and the coworker said that she thought she could help. The coworker told Sally that a distant member of her Tennessee family was the father of an eighteen month old child, who had been totally abandoned by her mother, who had two other small children.  The mother hadn’t been seen in almost a year. Co-worker told Sally that father of the child was pretty much worthless, refused to work, and would not provide financially for the child.  The little girl and her indolent father were temporarily living in a flea infested motel near Scottsburg. A long string of usually unidentifiable males were sharing the single room with dad and daughter.  The more responsible members of the family believed the living arrangement was going to end in disaster for the little girl.

 However, no one in her family had stepped forward to offer help for the child, as they were afraid of the natural father who had something of a temper, which was usually on display when he was consorting with his roommate and Mr. Jim Beam, which, as it turned out, was most of the time.

 If Sally and Sue would take the time to drive to Scottsburg, they could pick up the child and her few, meager belongings and begin adoption proceedings with father’s cooperation and that of her family.  Needless to say, Sally and Sue were in their car on the way to Scottsburg that very evening, positively elated at their good fortune.

Upon arrival at the flea-bag hotel, they were met by an unidentified adult male, who handed over the sleeping little girl who was filthy, her hair uncombed, teeth unbrushed, and had been put to bed in the clothes she had worn that day.  The television was blaring in the background over the loud argument of two older men, one of whom was presumably the child’s father. 

 Sally was then handed a torn, greasy grocery sack, which was filled with dirty, mismatched articles of clothing, one pair of worn out tennis shoes with holes in the toes and the child’s birth certificate and shot records.  As soon as Sally and Sue left the hotel, Sue promptly pitched the  clothing, which was infested with fleas, kept the birth certificate and shot records and enjoyed holding her now soundly sleeping daughter in her arms all the way back to Kokomo.

From the time of arrival in Kokomo until about four years later, all was well. No adoption procedure was ever started. However, when it came time to enroll child in preschool, a problem was encountered, because Sue had no legal paperwork placing child with her.  Sue was told by the school principal that she needed a completed adoption or a guardianship to enroll child. Both of those proceedings would normally require the cooperation of the child’s mom and dad.  Unfortunately, upon checking with dad’s family, Sue learned that he was gone with the wind, not having been seen in at least 3 or 4 years.  Natural mom was still out of the picture, no one having seen her in at least 5 years. 

 Learning these things had panicked both Sue and Sally, who had visions of child being snatched away from them by the police or the welfare department, if they were unable to comply with the school’s request. Even worse was the fact that the school administration now knew that a child of uncertain origin was residing within their domain.

They both told me that the child was the joy of their lives, had been fully integrated into both homes and was the apple of both husbands’ eyes.  This sequence of events and the child’s cloudy legal status had triggered the appointment.

I told them that all was not lost.  We needed to go through the complicated process of filing an adoption, notifying all the interested parties by running legal ads in the local newspaper, and having an adoption hearing, which was usually routine.  I assured them that I had done this many times before and that, providing natural mom and dad stayed gone, the adoption would likely be granted.  They seemed greatly relieved, inquired about my fees, paid them, and confirmed they would be back in two days to sign the petition to adopt the child.

I prepared the legal paperwork, alleging the child had been abandoned by both parents and that neither parent could be found, obtained Sue’s signature and filed all of it with the court.  Since there would need to be a home study done by the welfare department, along with updating the shot records for the child, the hearing to finalize the adoption was scheduled for about 4 months away. For a while all was well and on schedule, just as predicted.

About a week before the hearing was to take place I received a telephone call from my good friend and fellow attorney, William “Bill” Beck.

“Michael, do you represent one Sue ____ in an adoption set for hearing in a week?”  

 My heart sunk.“Yes, I do.  What do you need, Bill?”

“Well, it seems that I have, as we speak, sitting across from me, the child’s natural mother,  Nancy ____.”

“You’re kidding, right?”

“Unfortunately, no, I am not kidding.  She is here and has employed me to represent her at the hearing coming up.  She intends to resist the adoption and will prove that her ex- husband ripped off the kid and was  on the run with the kid up to the time your client got her five years ago.”

“I don’t think it will make much difference, will it, Bill, since she abandoned the child for at least five years?”

“Well, that’s the thing, Mike. If she really had skipped out on the kid, you’d be right. But, you wouldn’t believe the boxes of information she has with her, documenting her search for this child.  

 Her ex-husband stole the child from her and he has been one step ahead of her ever since.  Mike, there is no way she abandoned the kid.  You ought to see this stuff she has documenting her search.  I couldn’t have done better.  You are going to lose this one.”

“Maybe so, but I would like to look at what you’ve got.  Is that OK?”

“Sure, I’ll send my secretary over with it.”   

He sent it over and it was true.  This woman had mounted an exhaustive search through five states trying to find her daughter. It was undeniable that the judge was going to believe that the child had been stolen, not abandoned, and that mom had tried desperately to find her by tracking her ex-husband.  If I could not prove abandonment, and it was clear that I couldn’t, the judge would have no choice but to restore child to either natural mom or dad.

After I had carefully gone over the natural mom’s documentation, I realized that I needed to have a talk with my clients to tell them that I could not win the case, that the judge had no choice about restoring child to natural mom, since dad had no chance of custody, considering that he had kidnapped and hidden the child from a desperately and relentlessly searching mom.

So I called Bill and said, “Let’s you and me go see the judge and get him up to speed on what’s happened and see what he wants to do about the hearing.”

“Good idea,” said Bill.  

So Bill and I met with the judge, who immediately saw no point in having a hearing, as it would be very painful to my client and that he, the judge, had no choice but to restore child to mom.  I hated to admit it, but the judge was right.

Walking with Bill on the way back to our offices, I said to Bill, “You are right about this case.  The judge has no choice.  It is clear that mom did not abandon the child.  You win.  I will go over what has happened with my client this evening and I will make arrangements to return the child.”

“Sounds good to me, Mike. I don’t envy your job tonight.  I’ll talk with you tomorrow.”

That evening I sat down with my client and her family and explained the situation to them. I offered to go over mom’s records with them, which they declined.  They were stunned, but did not seem surprised.  All in all, they took it pretty well.

When I was finished, Sue asked, “If I still want to have a hearing, can I do that?”

“Yes, you can have a hearing, but the outcome will be the same.  We have no case and the judge has no choice.”  I was puzzled by the question.

“I understand that,” said my client.  “But I want a hearing, anyway.  If I have a hearing, my daughter will know later I did not just give up.  I went down fighting for her.  That is important to me.”

“OK,” I said.  “I understand.  We will have our hearing.  I will inform Mr. Beck.”  

 Later that evening I called Bill and the judge and brought them up to speed on the situation.  Both of them were sympathetic and said they would cooperate. 

The next day my client appeared to testify.  She testified in detail about how she and her husband had grown to love the child, who was the center of their universe.  She talked about family vacations, summer trips, Sunday school, birthday parties and her daughter’s many friends.  All of these topics were supplemented by numerous scrapbooks and photo albums.  My client brought pictures of her home, yard, the child’s bedroom, and pictures of the child’s school, teacher, bus driver and principal.  She brought her first tooth, a favorite blanket, her first shoes and pictures of her pet cat.  There was no question the child was well cared for, was enjoying every possible advantage, and thriving in a beautiful home.  About halfway through her testimony Sue began to sob.

Natural mom then took the stand and outlined the near superhuman effort she had made to find her kidnapped daughter.  She had photographs of her own living situation, which was at poverty level. It was obvious that Nancy was struggling to provide basics for herself.  She described being chronically unemployed and moving from house to house, just getting by.

About this time, to everyone’s astonishment, who should walk into the courtroom in the middle of the trial but natural dad!  Dad said he was there to regain custody as mom was incompetent to care for the child.  The judge was both incredulous and furious at the father’s outrageous demand and reminded him that he had committed the offense of child-stealing and that he was likely going to jail. 

This possibility quickly killed off dad’s ridiculous, self-righteous demand.  The judge then terminated natural dad’s parental rights, clearing the way for the judge to award child to natural mom. 

Natural mom went back to testifying about her history with the child, which largely centered on her struggle to provide basic necessities for herself and the child.  She, too, began to cry. Emotionally spent, she looked at her attorney and requested that we take a five minute recess, which the judge granted.  When the break was up, Bill walked back into the courtroom without his client and asked the judge for an additional twenty minute recess.  

 The judge granted the request.

When Bill and his client returned to the courtroom, Bill’s client retook the stand.  Bill asked, “Did you and I have a lengthy conversation in the conference room during the break?”

“Yes, Mr. Beck.  We did.”

“Are you feeling well today?  Do you know what you are doing?”

“Yes, Mr. Beck.”

“You have changed your mind about your request before the court, haven’t you?”

“Yes, sir.  I have.”

“Have I tried to influence you in any way?  Would you like time to consult with another attorney?”

“No, sir.”

“What do you want to do?”

“I want to give up my request to regain the custody of my daughter.  I want to agree to the adoption and I am willing to sign whatever papers are necessary to get that done.  I want my daughter to continue to live with Sue.  It is obvious to me that my daughter will be better off with Sue, than she would be with me.  I know that Sue and her husband love her as much as I do.  Sue and her husband can provide things for my daughter that I will never be able to provide.”

“ I only want a few things.  I want to be able to visit with my daughter one week each year during the summer and to see her on her birthday. I want to get copies of her school work and any awards she might receive.  I also want to know about any illnesses she has.  That is all I want.”

The courtroom was totally silent.  Everyone in the courtroom was stunned.  The court reporter and bailiff began to weep, as did my client and her husband.  Bill and I looked at each other in amazement. The judge, who was almost speechless, looked over at my client and asked my client if the mother’s proposal was acceptable. After quickly conferring with my client, I advised the judge that it was not acceptable as my client had just informed that mother should have more time in the summer and at Christmas than she had requested. After agreeing on more visitation, my client then advised the judge that she would comply with mother’s wishes.

The judge then granted the adoption petition that I had prepared for my client.  The matter was now ended with child going home with my client permanently.

For years after the adoption, I received birthday and Christmas cards from my client, as well as an occasional newspaper clipping about one of the child’s many accomplishments.  Surprisingly, the “two” moms made the arrangement work. Both moms worked as a team whose focus was on raising an educated, well-mannered young lady that they both could be proud of.  

My client told me that the daughter would frequently say how lucky she was to have two moms who loved her.  

 I couldn’t agree more.

Mike out.