Fly Boy and Grandma

That's Fly Boy and my delightful grandma, who's about to be 88 years old in a few days. This photo was taken just after Papa's memorial service on Saturday, which I will write about later.  It was a beautiful gathering and very fitting for a fine man like my dad!  Grandma held up better than all of us! 

Thanks to all of you in my beloved J-land who prayed, and wrote such comforting comments!  Your support meant so much. 

I am hanging in there, since there's still so much to do.  But, the sadness is overwhelming, especially as my family leaves a little at a time.  Pretty soon it will be just Ab and I and that scares me.  I miss Papa so very much and the tears come so easily.  He was such a part of my life for so long.     

Papa............

     John Morgan "Jim" Newman

   January 28, 1936-August 25, 2004

You can read this story in its entirety at http://www.bakersfield.com/obits/story/4900666p-4954904c.html

Quick Update

It won't be long now.  We've all said our goodbyes, and given him permission to go to the other side.

He's got his Mother at his side and she's holding up pretty well for her nearly 88 years of age!  She's been singing to him and we're now playing some Merle Haggard softly in the background.  Pray for us all! 

Thanks so much for the supportive comments.  You all mean the world to me!!

Lisa

24 Hours of Agitation

The past 24 hours have been the roughest since Papa came home from the hospital. 

My Aunt Mary and I took turns watching him while the other one shed tears.  It was heartwrenching to see him so restless. I think he has again become intolerant of his pain meds and he is suffering from psychosis.

By now he has to be experiencing sleep deprivation as well, because he hasn't slept in at least 24 hours.  This morning while I lay dozing on the couch near his bed, I jumped up when I saw him trying to get out of his bed, stretching the IV line to it's limit.  The hospice nurse had told me that I would probably have to move him into the hospital bed before long.  Today was the day. 

Mary, Yvette (my sis-in-law) and I, managed to take advantage of him wanting to get up, and we held him up as he walked on shaky, spindly legs over to the hospital bed.  We got him settled with the rails up for good measure.  

At 0740, I placed a call to the hospice on-call nurse, and it was obvious that I awakened her.  We talked about his agitation and restlessness, and whether it was "disease progression" or the accumulation of the drugs due to poor liver function.  After she arrived and examined him, we decided it was probably a little of both.  She suggested that we give him Thorazine to calm him down, but after what I witnessed when he had Ativan and Haldol in the hospital, I was reluctant to agree to any "anti-psychotic."   We settled on Valium.  Of course, they started him off on 2 mg. baby doses.  After 14 mgs. throughout the day, he is still twitching and restless and we are all exhausted.  He expended so much energy while doing all that movement, that his blood sugar got to dangerous levels.  It was so difficult to get it up again and we had to have the nurse contact the doctor, when 4 tubes of glucose gel and one glucose tablet failed to do the trick and get it up past 45.  I think everything we put in his mouth, was just sucked out by the gastric tube. You'd think that the glucose gel would actually absorb in his mouth and start to work a little quicker, but I guess with as sick as he is, everything is screwed up.  

I also talked with the nurse about the fact that Papa has not slept one wink since taking the Valium and Benedry, she asked if I'd be willing to consider the Thorazine at this point.  I told her yes, since I couldn't bear to see him continue like this much longer.  Unfortunately, this little town does not have a 24 hour pharmacy so the hospice nurse had to call it in to one that's 45 miles away.  It's now 1:25 a.m. and we're awaiting my brother's return with the Thorazine and hoping that it will work the way it's intended.  Papa needs some rest.   

I thought this hospice supervised death would be peaceful.  It's anything but at this point.   

Today's Blessings

While I have lost many close family members over the past 10 years or so, I never "participated" in caring for them in the end of their lives, like I am doing with Papa.  For all it's sadness, there are many beautiful moments and the satisfaction of knowing that he's receiving such loving, gentle care from us and the hospice employees. We should all hope for such an end to this existence. 

The kindnesses and love shown to us by friends, family and neighbors has been a blessing.  It's so comforting to know that people really care and that they'll take a moment out of their busy lives, to show their concern or offer to help in some way.  For example, several of my co-workers and my Uncle Lee, are donating some of their vacation time to me so that I can continue to get a paycheck while taking care of my father.  Since he's been so sick the past two years, I managed to use up most of my leave credits while taking care of him, so their contributions are such a blessing.

Yesterday, we received cards from my staff and co-workers, many of whom worked closely with Papa before his retirement.  I read Papa their heart-felt comments, which I am sure he really appreciated.  My friend, Kathleen (aka "Earth Angel") left some inspirational booklets on the windshield of my car.  She always knows just the right thing to do at the right time!  

He is receiving telephone calls and visitors from those closest to him, including family from long distances.

Today Fly Boy and his new fiance' arrived for his 10th high school reunion and a vacation!  She's absolutely beautiful (a real looker as Papa said), sweet, ambitious and she wants 4 kids!  The mother of my grandchildren, finally!  Fly Boy said he's taking the mother of my grandkids and Ab to an amusement park next week!  Ab's very excited and needs that fun distraction right now. 

My former inlaws, to whom I remain very close, drove Fly Boy up from the big city and they visited with Papa for a few minutes.  While I cried, my former mother-in-law hugged me, with deep understanding as she now has hospice assisting her with her 102 year old father. We had a few laughs about her father's flirty antics with the pretty hospice home health aide.  At 102 years old, you can get away with inappropriately grabbing the nurse and people think it's cute!  My former father-in-law has decided that since he's now 75, he can get started and get it down to a science!

Other blessings.......My brother Noel and his wife also arrived today to spend the weekend with us.  Noel bought dinner for us and gave Ab 20 bucks for the carnival at our Mountain Festival this weekend!  Noel is a chef, and he's agreed to make a special meal for us tomorrow night.  YUM!

Tam's cooked several scrumptious meals for us this week and taken Ab out to the country to feed Jake, her lamb, which is so appreciated. 

Aunt Mary has helped me in so many ways.  She said she does "good laundry" and asked me to let her handle it! I had no objection!  She's right...she does excellent laundry!  The kitchen gets cleaned every day and my house is slowly getting back in order. 

Trish came over after work and helped me sort mountains of paperwork that was stacked up on my dining room table.  She's a task master and without her, I would have procrastinated until it was a fire hazard.  Papers have now been shredded, sorted and organized and tomorrow, we may all enjoy Noel's special dinner around the table.  That hasn't happened in a l-o-n-g time.  You could say it's a Thanksgiving of sorts! 

       

Papa is Home

Given the proper incentive, no mountain, it seems, is too high to climb, no current too swift to swim, if one is a Cherokee.

                 Grace Steele Woodward

 

It's been a full, busy week since Papa came home via the Hospice transport.  He was so happy to be home in his own bed and he slept pretty good for the first couple of days until his pain increased.  He's had some visitors from close family and friends. 

Since it's been so busy, I haven't had much time for my journaling, so today's entry is more of a synopsis of what's been happening. 

Nursing Papa is mostly a 24 hour job but I wouldn't have it any other way.  I don't know how I could do all this without Hospice's help and support.  Tricia, my best buddy is also an angel and helps me every night as we change his TPN (IV feeding) and get him ready for the night.   

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Papa had a very restful night and so did I for a change. In fact, I didn't have to get up once and was up at 0600, ready for a quiet morning, before the rest of the family wakes up.

We have finally got his pain under control. He is now wearing 2 duragesic Fentanyl patches, and I have supplemented with 1-2 Norco every 4 hours, to help with "break-through" pain as suggested by the Hospice nurse. So far, he has not experienced any of the previous reactions to narcotic pain relievers and is resting very comfortably.

He is still lucid when he wakes up and can carry on a short conversation before he’s had enough and is ready to close his eyes. Yesterday, Laura, his current hospice Registered Nurse (GiGi is on vacation) told me to try to limit his visitors to about 5 minutes, because it can really zap the patient’s energy. She said that often they’ll get so tired that they’ll sleep for 2 days afterwards, then rally back again.

Laura was an absolute angel and I felt an immediate connection with her. When she arrived, the cat took the opportunity to run out the front door and she said, "That looks just like my Oreo!" I about fell over and said, "That’s our Oreo!" Coincidence or just a bunch of black and white cats with a name that Ithought was going to be pretty original?

After finishing with Papa, she sat with me for such a long time, while I cried and asked a lot of questions about "the end" and the spirit leaving the body. The spirit question was prompted by something that Rocky that he experienced when he was present for the death of 2 family members. He said that he observed something like a "vapor" leave the body at the exact moment of death. With the first death, he thought he may have been imagining things, but when it happened the second time, he knew what he saw was real. Laura’s answer was that she personally never experienced that when near a dying patient, but she did smell roses once. She said that she has "heard" others say they experienced what Rocky witnessed, and that some people are just more "in tune" to those sort of spiritual things than others.

This morning, Frances, his Home Health Aide, will be here to give him a bath, shave and wash his hair. She is so gentle and caring with him, which is so important right now as sometimes, he can experience discomfort just by being touched or moved.

Yesterday we had a visit from Ed, the Hospice Chaplain. I absolutely fell in love with him. He’s a long and lanky cowboy type and a spry 78 years old. He was easy to talk to and asked lots of questions to determine the family dynamics, while spending a couple of hours with us. Tammy and Abbie were both here and I am so glad that they were able to spend time with him as well. Ab tends to avoid all of what’s happening by spending time with her best friend across the street, but I managed to get her home for his visit and she seemed to enjoy and listen intently to what he said about grief and all. We then spent some time with Papa and held hands and prayed around his bed. Ed is a Mason, like Papa and they had several other things in common, so it seemed to be a good fit.

Since Papa hasn’t been an active member of any church, Ed said that he’d be happy to officiate at Papa’s services if needed. He also asked me if I’d talked with Papa recently about his wishes for burial and the like. I told him that we’d talked about it a few months ago, but I’d again bring it up to make sure that I had right. This morning, Papa seemed to be very alert, so we talked about his wishes. He said that he wanted to be cremated. He said he wanted his body taken directly to the crematory, and no unnecessary, costly preparation. He told me that he didn’t want to be buried in Oklahoma after all. He said that he’d like to be buried here in town, then moved to the new Veteran’s Cemetery when it’s finished in the next few years.

That’s what I was hoping he’d say. I just need to have "him" nearby.

Olympics......................

This information about the Olympics is from Knowledge News...I've always enjoyed the games, but with Papa's medical situation, I haven't been able to keep up with them this time.  When I was a little girl, my Godfather, Jay Honig, was an Olympic official in Track and Field.  Sometimes, he would take me to qualifying events in the Los Angeles area.  When he attended the Olympic games, he'd send me postcards from all over the world.  I am ashamed to say that I don't have a single one anymore.  Probably, they didn't mean much to me at the time, and my mother was not the type to preserve such important pieces of history for me.  She was probably too busy with 5 little ones to think about something like boxing up postcards...........

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~   

Behold! The Statue of Zeus at Olympia,
one of the Seven Wonders of the Ancient World

Cue the Olympic trumpets. The games are back--and this time, they're home. You know the games are Greek. You know their old Greek home was the religious sanctuary of Olympia. You may even know that Olympia was home to the gargantuan Statue of Zeus, one of the Seven Wonders of the Ancient World. But do you know what those ancient games were really like? They were abolished in A.D. 393, Zeus crumbled a few decades later, but the history is still there.

How the Games Began

The Greeks have been praising Nike for thousands of years. That's Nike, the ancient Greek goddess of victory, not the modern sneaker company.

According to legend, the first Olympics began in 776 B.C., with a dusty, barefoot race held during Olympia's Zeus festival. After that, when Greeks flocked to Olympia's rural sanctuary every four years to praise Zeus, they stayed for the thrill of Nike and the agony of defeat. Similar games were held at ancient Delphi and other sanctuaries, but Olympia's games reigned supreme.

Like their modern equivalents, these competitions were intended to reveal the most skilled athletes. But a lack of protective clothing, random pairings that failed to account for size or skill, and few rules made the ancient Olympics into a most dangerous game. Ancient fans were as forgiving as a Russian gymnastics coach, and competitors could die trying to please the crowd.

Battered Ears, Broken Men

Forget familiar restrictions against low blows, kidney punches, and hitting a man while he's down. Ancient boxing was closer to a barroom brawl. Fighters were free to unleash a flurry of blows on a cowering opponent if they felt like it. Rounds didn't exist; men simply fought until one cried uncle or got knocked out cold.

At first, boxers wrapped supple leather straps called himantes around their hands to lessen the impact of their blows. With each passing Olympiad, the straps grew harder. In some cases, metal was added for an especially memorable right hook. It's hardly surprising, then, that in one of his dialogues, Plato refers to boxers as "those with the battered ears."

Wrestlers had to observe a few more rules. No biting, eye-gouging, or genital grabbing, please. But choke holds and joint locks were legit. One particularly violent event, the pankration, combined wrestling and boxing. Athletes fought bare-handed (without himantes), punching, kicking, and grappling to win. On one occasion, an athlete who was strangled to death during a match was judged the winner, and his corpse was crowned with the prized olive wreath.

The Quick and the Nude

The fleet of foot enjoyed prominent status even among champion athletes, as most Greeks had grown up listening to legends of the half mortal, half divine Hercules, who ran great distances as a test of strength. Olympic athletes proudly ran their distances barefoot and naked, but legend suggests that wasn't always so. An ancient story circulated that the tradition of nudity began in 720 B.C. when an eager sprinter simply lost his shorts.

Competitors had four races to choose from, all measured by the length of the 192-meter stadium. The first was called the stadion, a sprint exactly one stadium long. The next race was double that length, while the third was long distance--between 7 and 24 stades.

The other race was the hoplitodromos, an exhausting two- to four-stade sprint by runners encumbered with 60 pounds of hoplite armor. Eventually, nakedness won out there, too, and racers grabbed just helmets and shields. A starting rope ensured few jumped the gun; those who did were beaten.

Chariots of Fire

Greek jockeys also competed sans pants. No saddles or stirrups either. And they never got much credit for being real athletes. As in modern times, it was expensive to buy, stable, and train a horse. Jockeys were considered mere employees. When a race was won, the owner, and not the rider, was crowned with the olive wreath.

The real glamour lay in the chariot races, easily the equivalent of today's NASCAR. Spectators held their breath waiting for a good chariot crash. The four-horse chariot race, called the tethrippon, was the real crowd pleaser--thrilling to watch, easy to bet on, and terribly expensive for owners. According to some accounts, Greek women could vie for the olive wreath in this category as horse owners, though under practically every other circumstance, married women were expressly forbidden to watch the games.

Complaints that the horse races were rigged cropped up frequently. In A.D. 67, the extravagant and eccentric Roman emperor Nero staged a unique ten-horse chariot race. Judges declared him the winner despite the fact that he fell from his chariot and failed to complete the course. Later historians duly struck Nero's name from the list of champions.

And for the Overachiever . . .

There was the pentathlon--"pent" for five events: sprinting, long jumping, javelin hurling, discus throwing, and wrestling. The philosopher Aristotle called pentathlon competitors the most beautiful athletes of all, since their bodies were "capable of enduring all efforts."

Discus and javelin hurling required balance, agility, and strength. The saucer-shaped discus was more or less a lead or stone frisbee that varied in size, while the wood javelin was a six-foot pole with a leather thong near the center that let the hurler keep a firm hold. Long jumpers used barbell-shaped weights called halteres to increase their distance, in a swinging motion that physicists say really does work.

The games concluded as they began: with a sacrifice to the gods. Winners returned home to be feted with banquets, parades, and money. Some were even granted free meals for the rest of their lives. The defeated went home in disgrace.

Claire Vail
August 12, 2004

Want to learn more?
Tour ancient Olympia
http://www.perseus.tufts.edu/Olympics/site_1.html

(photo/painting credit-16th century Dutch artist Maertan van Heemskerck)

Papa's Coming Home-Part II

I headed up the mountain to home, with a heavy feeling of dread, knowing that Papa would not be comfortable in that facility. He was obviously more alert than many of the other patients, and due to his condition he was not able to do much for himself, without assistance. I just knew he wouldn’t get the assistance he needed at the right time. How would he and his IV pole make it to the toilet, having to get through the cluttered room? That is, if he even managed to get himself out of the bed, without help.

My heart was so heavy. But, it was then that I remembered that I left Papa his cell phone. Thank God. I couldn’t believe it as I initially surveyed the room that the patients did not have telephones near their beds and I asked the intake nurse about it. She informed me that the facility had a cordless telephone that was available to the patients, and that if the patient wanted to make a call the telephone would be brought to them if they rang their call button. "Oh right. I can count on that!" I thought to myself. So, with her blessing, I left Papa his cell phone and put it right near his side. Feeling some comfort in knowing that he had his phone, I immediately went to bed once I got home and quickly fell asleep.

I was startled by my telephone ringing at 3:00 a.m. and immediately thought the worst. Someone had died! I panicked and quickly looked at my Caller ID. It indicated it was Papa’s cell phone calling! I thought maybe he couldn’t sleep, but what I heard was no surprise.

"You need to come get me! This place is just not for me!"

I asked him what happened, or didn’t happen to cause him to feel that way. He told me that he was not able to get any staff’s attention, despite ringing his bell. He said he was not getting his stomach medicine as he needed and he just didn’t like the way that they were doing business. I understood, and I was somewhat relieved that he made that decision. I told him that it would not be a good idea for me to pick him at that hour, since he had a catheter and gastric drainage bag that I didn’t know how to handle yet. He needed the IV feeding mixture for home, that had not been refilled since he went in to the hospital. I explained that he also needed other medication that had to be prescribed by the doctor in discharge orders. The HMO doctor and nurse were not scheduled to arrive until 9 a.m. so I assured him that I would pick him up in the morning.

The telephone rang again at 4:50 a.m. It was Papa again.

I could hear his IV pump alarm in the background. He said it had been beeping for hours. Papa said he saw the shift supervisor near the door to his room and hollered, "Hey, I’d like to talk to you for a minute!" and she replied that she’d be right back. She never returned! He was clearly agitated and wanted out of there NOW! Again I tried to explain that we’d be able to accomplish that much better during business hours. We compromised and agreed that I would call my youngest brother who lived in that area, and ask him to sit with him until I could get there. My brother was just getting up for a busy day on a very important project, that he said he really couldn’t miss. He assured me that if it was a true emergency that he’d be there in a minute. I understood and decided to head down the mountain myself. I called Papa back and he said, "Just get here as soon as you can!"

Shortly after 6:00 a.m. he again called and said, "You HAVEN’T left yet?"

I promptly got it together and once again headed down the mountain. It was very clear my Papa needed me. NOW!

 

To be continued………………….

 

 

 

 

 

Papa's Coming Home...........

On Wednesday, our HMO decided that Papa could be discharged from the hospital and sent to a "skilled nursing facility" to regain some strength, through physical therapy and continued medical care. Nothing had really changed in his medical condition, and in some aspects he was worse. But, apparently they considered that he was tying up an expensive hospital bed at his "level of care." Although, his head was finally clear of the effects of the narcotics and his white blood count was down, which showed the infection was getting better with the course of prescribed anti-biotics.

The HMO said that they contracted with the facility and had one wing that was devoted entirely to their patients, to include a full-time HMO doctor and registered nurse-case-manager. The "skilled nursing staff" are not employed by the HMO and that became very evident. From the outside, the place looked wonderful and modern. It was set back in a tree-lined, shady business area of town, but away from the busy main street .

In this section of the valley, the heat can be excruciating and right now we’re having a terrible heat wave with an average daily temperature of 108 degrees. I think it was at least that hot in the facility’s lobby as we wheeled Papa in the door. To give them the benefit of the doubt, it was nearing 7: 30 p.m. when we arrived, so it was likely that the facility shuts down it’s air conditioning in the areas not used, after business hours. There were two, 200 gallon fish tanks in the wall of the waiting area, and I cannot believe that the water was not boiling. The fish appeared pretty sluggish, but I hope for their sake that the aquariums are temperature controlled.

We were told that Papa’s room was 323B, and we followed the young man pushing my dad’s wheelchair down the long hallway that was probably just 20 degrees "cooler" than the main lobby. Of course, since I am menopausal, anything above 75 is too hot for me. The attendant wheeled skillfully through the maze of dazed looking people in wheelchairs, many babbling and asking for assistance, which was generally ignored by the staff. Later, while I rushed down the hall for a quick potty break, I made friends with a frail 93 year old lady named "Polly" and I held her soft, bony hands while she told me about her breathing difficulties, her lost address book and how "they" wouldn’t give her vitamins. For that few minutes, my bathroom business could wait.

In the mean time, the attendant got Papa settled in his bed. He was fortunate to get near the windows and an air-conditioner, of sorts. The room was warm and crowded with all the medical equipment, used by his roommate, Pierre. Pierre; a double amputee just below the knees, looked to be about 65 or 70. He laid in his bed, clothed only in a diaper with his oxygen machine next to his bedside table. His "legs" complete with shoes and socks, were standing at attention, across the room by a wheelchair. For some reason, Pierre thought I was a staff member and he repeatedly asked me for help wanting to be "cleaned" or his water handed to him, etc. The water was not a problem, but I explained that I’d get one of the nursing staff to deal with his other issue. I’m pretty helpful, but sometimes I have to draw the line. Besides, we hadn’t even been introduced yet! J

Papa laid in the bed and I had his chart in my hand for about 45 minutes, until the intake nurse came in, hooked up his IV and took the chart from me. At that point he began asking for his Reglan, (a medication for his acidic stomach) and something for the pain, but they had to call the doctor for authorization.

Repeatedly Papa had to use the toilet, and we’d have to maneuver his IV stand through the crowded room to the restroom on Pierre’s side of the room. He’d then have difficulty getting up off the stool, which did not have a raised toilet seat, so we’d have to call for help. Finally, they showed us the portable toilet seat/stand that he was supposed to place over the stationary stool. Ohhhhh. I think I missed that part in my 30 minute nurse’s training.

We stayed with him until about the time we felt he’d be able to finally get some much needed sleep, thinking he was in fairly good hands and then we headed home.

To be continued…………………

 

Sit Down, Shut Up and Rest...............

I am up pretty early today and have already enjoyed my stress breakfast, consisting of a half box of Junior Mints, leftover from yesterday, and my icy Diet Pepsi.  I'll grab something more substantial from one of the local drive-throughs on my way down the mountain to visit Papa.

It's interesting how our bodies will just revolt and start shutting down, when we don't have the sense to stop and rest.  I just couldn't make it to the hospital yesterday evening, with good reason, I guess.  My poor body just gave out after a very long day and I was in my bed, exhausted and hurting at dinner time.  So, I called my Aunt Mary at the hospital and got an update on Papa, instead of making the 90 mile round trip on top of what I just endured. 

I had a subpoena to appear at a Personnel Relations Board hearing in the big city, which was a 240 mile round trip.  It required that we get up and go at 0630 in order to beat the worst of the traffic.  Since there were 3 of us in the van, we were able to drive in the carpool lane and we made pretty good time, arriving with about 45 minutes to spare. 

When I know I have to get up so early and attend something so important, I always have a hard time getting to sleep and staying asleep.  Probably the anticipation of it all.  It was no exception in this case and I last looked at the clock at 1230, and woke up at 0340.  Wide awake.  Telling my silly self  to hurry and get back to sleep since the alarm was set to go off at 0510.  It didn't work.  However, the good part is that I arrived on time to our meeting place. 

The drive was enjoyable, since the 3 of us ladies really like one another.  I was able to share what's going on with Papa, whom they know since he worked with them previously.  One lady recently lost her mom to Alzheimer's Disease after a 9 year ordeal, so she was especially understanding.  All of us can tell a pretty good story, so we laughed, shed a few tears and the time just flew by. 

After the hearing we drove the surface streets trying to find something different to eat since we were in the BIG city.  We ventured in to Beverly Hills oohhhing and ahhhhhing, seeing how the rich folks live, and then we headed down restaurant row.  After finding that most of the places didn't open for lunch, we ended up settling for an Alcapulco, a mexican food chain.  That was probably our best bet, since we weren't likely to afford some of the classier places and at that point we were s-t-a-r-v-i-n-g, and ready to eat the upholstery in the van. 

Anyway, about Papa.  Although Dr. Black did not personally telephone me with a prognosis, she referred us to hospice and I received a voicemail from someone from there while my phone was on "silent" as I was testifying.  I couldn't stand the thought of talking to her with my co-workers present, so I put off returning her call yesterday. 

When Aunt Mary updated me, she told me that a representative from our local hospice visited Papa in the hospital yesterday afternoon.  She asked Papa if he knew what hospice was and he replied, "No, not really."  She explained it that it served those people who were thought to be in the last 6 months of life, to make them comfortable, etc.  Aunt Mary said that she was unable to see Papa's face, but he indicated that he was interested in their services.  "He knows" said Aunt Mary.  He know's he's dying. 

The hospice representative said that she wanted to talk with all of us when I would be present and said there was "no hurry" and she'd await my call.  I guess I will have to get with her today.  But, I'd still like to talk with Dr. Black first.  I think I will telephone her office and ask her to call me so I can hear it straight from the horse's mouth. 

Well, I'd better get upstairs and fix this face, then head on down the mountain.  Please continue to keep our family in your thoughts and prayers. 

  

Watching Papa.............

I am beyond exhausted. Abbie received her McDonald’s dinner at 10:00 last night after I arrived home from the hospital. My meals have consisted of drive-thru fast food, eaten on the freeway and an occasional piece of hospital cafeteria pizza (actually pretty cheesey and tasty) that I can choke down in the few minutes I have while the nurses are busy cleaning up Papa and they’ve asked me to step out for a bit.

It is the 9th of August and I have yet to pay my bills. There’s at least 3 days worth of mail in the mail box that I haven’t bothered to pick up. No matter. It would just join the stack of unopened mail that litters my house. Oreo sits with her ears back, clearly irritated that I haven’t fed her any of her favorite tuna canned food in at least a week. The boxers are "enjoying" dry cat food until I can get to the store and replenish the pet food for all of them. Ab insists that they "love" Oreo’s dry Friskies. I guess. And, rather than taking care of that, here I sit putting these words on paper. But, I have to.

I read two journal entries in the past couple of days that really touched my heart. Mary Louise at Watching My Sister Disappear writes so lovingly about the devastation of Alzheimer’s and the toll it takes on her and her sister. It got me to thinking about the fact that for the past two years, I have been watching my father disappear. The life is being sucked right out of him. Slowly. Painfully. Most of all, cruelly. Yesterday, at his bedside, my Aunt Mary summed it up so well when she said tearfully, "As much as he’s done for others in his life, this is just so unfair!"

On Friday, they did a CT scan and ultrasound and determined that his abdominal cavity was filled with fluids. They took him in to drain the fluid and removed 7 liters! To put that in perspective, I had to break it down to layman’s terms, using my 2 liter Diet Pepsi bottles for a comparison. That’s 3 and a half bottles full! Can you imagine? The culture came back that the fluid is highly infected. So he has "sepsis" which is making him very sick on top of all of his other issues. They have started a new course of antibiotics to fight the infection.

The past couple of days have been so difficult to watch. He has not slept in about 3 days. Yes, it’s now 3 days. I’ve watched it right along with the nurses.

He does not tolerate or process any narcotic pain reliever like most people. It seems it has the opposite effect on him and the medical staff find it so incredulous. But I’ve seen it over and over, having been at his side during previous operations and hospitalizations. A dose now and then is fine, but don’t give it around the clock, or for an extended period of time, because he becomes a zombie. Wide awake, staring at nothing but the ceiling.

He’s unresponsive and does not recognize anyone, grabbing at things, laughing and talking, pulling out tubes and trying to get out of the bed. And, it’s exhausting to watch, and knowing that a person cannot get better if they don’t rest. My friend Lisa, at Coming to Terms with Middle Age, brought it all home to me last night in her journal entry about watching her sister unsuccessfully fight for her life and having those awful memories linger, way after her sister was gone. I don’t want that to be the case here. I can’t stand to see him suffer and if this is the end, can’t they do something to give him some peaceful rest?

On Saturday, after watching this ordeal and talking with his nurse, I suggested that she ask the doctor if he could prescribe something to make him relax. The doctor prescribed Ativan, an anti-anxiety medication. Me and my big ideas! The medication compounded his problems and we were just astonished as we watched it for two hours. His nurse called the doctor again and explained how he reacted to that medication, so the doctor prescribed Haldol, an anti-psychotic. Wrong! Arrrrrggggghhhhh! It was again compounding the symptoms. I learned first hand about what synergy means when it comes to drug use.

Yesterday afternoon he was finally able to recognize family and respond appropriately to some questions. He was still not sleeping when I left last night. I am praying that the narcotics that are so toxic to him, will leave his body soon and so that he can get some blissful relief.

I am on my way to the hospital, hoping to hear that he had a better night.

Papa and Aunt Mary

My Aunt Mary’s coming to visit! Today! All the way from Oklahoma…..to be with us as we go through all of this with my dad, her big brother. Right about now I can use all the moral support that I can get. Besides, she’s v-e-r-y funny! Hysterically funny! We can laugh until there are tears rolling down our faces. One thing about this family, we’ve got a serious sense of humor. And…it’s a good thing, all considered.

Bless her heart, Mary’s not without her own major medical issues, including diabetes; that’s really taking its toll on her. Just about 3 months ago, she had a benign brain tumor removed and currently she’s walking on two feet that are falling apart due to a diabetes related disease. Walking! The doctors keep screwing them back together and then they fall apart again. Somehow, she keeps walking and laughing. I sure could use a few laughs about now.

According to the doctors, Mary’s brain tumor had been there for a really long time, slowly growing and affecting her in a variety of ways. All of a sudden, she had symptoms similar to a stroke and then the tumor was discovered and removed in a matter of days.

Mary’s doctors were amazed when she was up walking and talking, within 24 hours of her brain surgery. She was cracking jokes with everyone and talking on the phone to stunned family and friends. One of her main topics was how "good" the hospital food tasted, which made us wonder if she didn’t have some serious brain damage. Apparently the tumor had affected the part of her brain that dealt with taste, and after it was removed, e-v-e-r-y-t-h-i-n-g-…..including hospital food was "Wonderful!"

It was at that point, we decided that she could blame everything on that brain tumor. After all, the doctors said that it had been there a very long time! Years. Wouldn’t we all love to have an excuse like that for our behavior!

Oh yeah, we could work that one!

Overweight…well, you see, I had this brain tumor for years and it affected my taste, so I had to eat more to find something that tasted good. Nothing ever tasted good, so I kept experimenting.

Exercise? Well, the brain tumor affected my motivation center, besides I think I was having some motor skill issues associated with the tumor.

Bad haircut? I don’tknow what I was thinking. It was probably the brain tumor.

Argument with hubby? Well, I didn’t really mean to call you a self-centered idiot. I had a brain tumor for cryin’ out loud.

To the kids….Oh, remember that time I put you on restriction for the rest of your life and you thought it was excessive. Yep, the brain tumor.

I just love my Aunt Mary!

Procedure=Surgery

Yesterday didn't go so well. 

The gastro doc had problems with her "procedure" and now she's referred Papa's case to a surgeon. 

Apparently, after she put the tube in his stomach, she couldn't get the other part down into the small intestine due to "loops" and the fact that his organs are just not arranged like most folks', due to all his previous abdominal surgeries. 

Fortunately, the surgeon is very familiar with Papa's insides, although he wasn't the last doctor to operate, so there's been some changes in the "layout!"  The surgeon is going to consult and review all the info from the December surgery before deciding his course of action and said that he'd probably take him in to operate on Monday. 

He feels that it's going to be a tough job to find a suitable piece of intestine to use, since Papa's had so many intestinal resections.  The other problem is the healing process.  Due to his diabetes and the fact that prior radiation has caused such tissue damage on his belly, it's difficult to find a "good" area to cut through and then expect it to heal properly.   

In the meantime, I am concerned about him developing pneumonia because he's coughing and sounding congested, so I asked the nurse to get him checked. 

Although one good thing....Papa said he got a good night's sleep for a change (before the procedure), since they had him really doped up on Dilaudid.  I may have to speak to them about his pain meds, because last night he was beginning to talk pretty crazy, which is typical when he starts getting frequent doses.  Then, if they don't back off a little, he'll start becoming a "management" problem with hallucinations, trying to get out of bed and pulling at all his tubing.  I've seen it so many times during his hospitalization over the years.

Besides just being downright sensitive to the effects,  since his liver isn't working right, he doesn't process it through as fast as others in better health.  So, we get a cumulative problem. 

Well, it's off to the hospital again, after I call work and give them an update.  One positive thing about all this is that I have had some quiet time to sit and review the manual for my new digital camera.  This thing is amazing and I look forward to getting some great pictures with it someday.  I practiced on the flowers I got for Papa!  Problem is, I don't know how to upload them to the computer yet!  More to study!

See ya!  

Update on Papa

Today will be a quick entry as I am again off to the hospital.  I want to be there as early as I can, because today is the day that they are inserting Papa's feeding tube in his stomach.  His gastro doc calls it a "procedure" rather than surgery, but she's having his surgeon stand by in case she gets into trouble among all his scar tissue and displaced organs. 

The feeding tube will have a "port" (my word) to allow feeding directly to the lower intestine, and one to remove the irritating contents of his stomach, which isn't working anyway.  Either way you look at it, she's cutting two holes in his belly.

A very kind, young woman doctor;  Dr. Black, met with us yesterday to get an overall view of Papa's case from us, and then she was to meet with all his other "providers" (HMO speak for involved docs) and try to get a diagnosis and prognosis.  Unfortunately, she called later that day and said that she was unable to make contact with the gastro doctor, so hopefully today, she'll have more info and get together with us then.  She did speak with Papa's primary care physician, and obtained his medical history.  She said that they have a few "ideas" to share with me as well. 

She gave me a booklet and pamphlet on hospice care and one that was all about the tough choices involved in end of life care........forced nutrition and hydration, antibiotics, CPR and life support machinery, etc.

I'll have to say that I really learned alot about the way that the dying body reacts to forced hydration from that booklet, since I'd already had my mind made up on some of these issues, without all the facts.  All my information came from the media's reports on cases in the news, like Karen Ann Quinlan's situation.  It was good to get another viewpoint.  I passed the book on to my youngest brother so that he could be informed and involved, if it comes to that.

Dr. Black said she'd be glad to meet with my brother at a later time, if he wasn't able to be there today when she finally has all the information together. 

This squeaky wheel is finally getting some grease. 

 

Life..........

Sometimes I'll have 4-5 books that I am in the process of reading. I will pick up whatever one suits my mood at the time, until I tire of it.  This time, they all got put aside while I read the one that really captured my attention; I'd Rather Laugh; How to Be Happy Even When Life Has Other Plans for You, by Linda Richman.  I read it straight through.    

It's too bad that this book ended up on the shelves of Dollar Tree because I really got a lot out of it's very simple messages.  It's one that I'll pass on to Tam.  Or, what the heck......I might even spend another buck and buy her her own copy.  I will probably need to reread this one a few times. 

Since I am prone to depression, I am a self-help book junkie.  Whatever works.  It's far better for me to fill my active little brain with helpful words, than bad news, gloom and doom, war and the latest terror threats.  My real life presently provides me with enough challenges to think about.  The author of this book seems to think like I do.  Maybe that's why I liked it so much!

Regardless of what I read last night before slipping into a heavy, deep sleep, I still woke up with the need for a serious pity party.  I am just feeling like my life is coming apart at the seams.  Sitting here with tears running down my cheeks is not going to help a thing, but I think it's probably cleansing.  I'll get it over with and get back to business. 

My house is as messy as it's ever been and I have no time, no energy and no inclination to clean it.  I could have someone come in and clean, but I'd be horrified for anyone to see it right now.  Ab's the biggest mess maker around and since she's here unsupervised while I am at the hospital, it gets worse by the minute.  Last night I told Tam that she needed to come over today and supervise Ab getting this place in shape. 

I just feel that's the least she can do under the circumstances.   

Gotta go!  I have to meet with one of the doctors about Papa's prognosis at 11:00 am.        

HMO Blues~Part II

Well, yesterday I finally got Papa admitted into the hospital where he ought to be.  

Considering the fact that he hadn't improved in the slightest after three days of hyperal "therapy" at home and he was only passing small amounts of urine, I managed to convince his gastro doctor by telephone that he was in desperate need of hospitalization.  But, she was somewhat reluctant to refer us to the emergency room.  She said that she didn't feel he was getting enough of the nutrition and in her words "it's going to get worse" (No spit, Sherlock!) and in her infinite wisdom says to start another bag so he'd be on it 24 hours a day instead of 12. 

Oh, no you don't.  Let me refresh your memory.  In his words, he's had or has everything but West Nile and Leporsy!  In addition to the HEP C that's killing him, he has one kidney, pancreatitis, a dueodenal ulcer, COPD, he's a 68 year old diabetic and he's starving to death at home, weak as a newborn kitten and YOU people are having me take care of him to save a HMO BUCK!   

She reconsidered and said to go ahead and take him to the ER...45 miles down the mountain...and that she'd just have to rearrange her schedule to fit him in for an Endo procedure on Tuesday.  Gee darn!

When I got him to the ER the examining doctor was appalled that the HMO was having us feed him at home with the hyperal, through a "peripheral" line instead of a "pic" line.  He said that the substance had way too much protein to be going through such little veins and that it erodes them.  His comment was, "Well, that was awfully ambitious of the doctor to handle it that way!"  (SWELL!  I knew it wasn't right!)  Then the RN came in and I explained everything to him and he also had a fit about that type of feeding through an IV on the arm!  Now I am beginning to get really mad about the way that we've been treated by this HMO.   

I snuck a peek at the chart and the ER doctor (who is not affiliated with the HMO) listed him in "guarded" condition, which, with alllll my recent medical training equates to....pretty dern sick!  The lab results show that he's in some serious trouble with his BUN and Creatin levels which have to do with kidney function.  Not good.  He also has a high WBC and a low RBC, also not good.   

But wait...the HMO has a "hospitalist" that has to come do his evaluation before he can actually be admitted.  He decides he's in "satisfactory" condition and admits him.  He explains that his entire digestive system has shut down...which doesn't sound too satisfactory to me.....and that they'll start with a NG tube, catheter and then go from there.

Fortunately, he also mentioned a skilled nursing facility once they get the present problems under control, so Papa can regain his strength.  I hope so!  And, I will be his advocate because I am mad and I am not going to take this anymore. 

Well, I must head down to the hospital and see what's going on, or not...as the case may be.