The Elderly End Game

Dear Diary 4-9-09

Wow. Lets start with I am angry and sad all at the same time. I never expected this was going to be the road/highway we would get on. I want to turn around and start this trip over. These moments seem so out of control and difficult. I admit my fatal flaw is avoidance. (and spelling!) With that admission, I am going to try and work out this situation with as much gusto as I can muster.

My Dad woke up and went to Church and the dentist. By the time he got home he was showing symptoms of a stroke such as, holding on to walls for balance and had a very bad headache. The Dr. did a head CT and said, "your Dad's brain is bleeding". The next words sounded like blah, blah, blah... ICU. Okay I thought "they can fix this!"

Brain Bleed turned into endless units of plasma, repeated CT scans and the diagnosis of a brain tumor, most likely a glibolastoma. The ultimate assualt: a cancerous brain tumor. Some words are still banging around in my head: "Unlikely", "Good as it gets", "surgical options", "left side neglect", "small grapefruit" (wouldn't that be an orange?) "80 years old". None of these words seem optimistic, yet I am to remain hopeful and upbeat. Ironic and insulting to say the least.

His brain injury makes him Euphoric. This is almost unbearable. He wants his obituary written. This small request is like cutting out my heart, dropping it on a platter and cutting it up into little pieces. He says "I am going to have brain surgery!" with the same delight a child would express his desire to get a Happy Meal from McDonald's. While I am reassured that he is in good spirits this attitude hardly inspires gratitude for this situation in my heart. My head takes charge of my heart so I don't stop being tender with him and break down and cry. I can sob this pain out when he is buried. For now I will only weep when I am alone.
Brain Surgery is successful in that he didn't die. "Is this a good thing?" I wonder when alone and able to process more. For now, the fact that he is breathing on his own is supposed to be reassuring. I guess any port in a storm. This is hardly enough of a board to float into the ocean of life.

This is me telling the world that the Elderly End Game is hard. Ugly. Universal Experience. Circle of Life. All of that. Yet, I have never felt more useless and vulnerable in my life. I am superfulous in his journey, yet his is mine. I so wanted his End Game to be gentle, not a fight to the finish. Praying seems out of the question. I think that's the anger.

You can watch Jill Bolte-Taylor on www.Oprah.com. Simply type in Stroke or Jill Bolte-Tayor into the search engine on Oprah's site. I watched these two shows and also listened to the radio program when they first aired. The information was invaluable when my dad was struck down. I strongly recommend you watch this BEFORE you find yourself in my situation.

Dear Diary 4-13-09

I have been asked,"how did my dad act before he went to the hospital?" I am surprised by this question because there is so much stroke information available. However, even the hospital doesn't have this information posted. If I can help one family with this post, I will be the happiest person. Stroke and brain injury are very tricky, sneaky in their presentation of symptoms.

These are not the only symptoms of a stroke or problem with the brain. However, if you notice anyone experiencing any of the FAST symptoms, get them to the hospital. Call 911 do not drive them yourself. My dad was unable to maintain his balance and had an extemely bad headache. Also, he had problems with his sight. The hospital has the ability to administer drugs that will help the blood clot in case of stroke that will help to disolve the blood clot if administered within a 3hour period. Usually with a very good result with minimal damage to the brain.

My dad did not have a plain stroke, his brain started to bleed. It was explained to me that it started like a run in panty hose and just kept shreading very similar to how a runner can get away from you if you don't use nail polish to stop it! He was on a blood thinner. The hospital immediately gave him a shot of vitamin K to thicken his blood and also many pints of platelets. His brain continued to bleed for 5 days.

The lost blood pooled in his brain causing additional stroke damage: left side neglect, eye sight problems and a weakness on the left side. Neglect means that the weakness he shows on his left side is because he doesn't know he has a left side. If you sit on his left side, he actually forgets you are there. He "forgets" he is holding something in his left hand and also has no concept of feeling on the left. This means he doesn't know I am holding his hand. In exteme cases of "neglect" the person can forget to put on one shoe or not shave one side of face. This is because the brain doesn't recoginze the whole, it only acknowledges the one side. This is so complicated and frustrating. I hope I am explaining it well enough that if you have a loved one who is experiencing the problem of neglect, you will know they are not faking or playing games. They really have no idea.

Understand that my dad had the majority of his brain damage on the right side of his brain. That caused the euphoria he had and took away his ability to be "logical". If the blood had attacked the left side of his brain he would have lost motor skills on his right side and also would have become much more aggitated and angry.

I guess in some respects his happy state is a good thing. The majority of times when you ask him a question he says "yes!" with much enuthisiasim and doesn't complain at all. I do wonder if he understands the concpet of pain. There is no way I could endure the surgery he has had and have no pain killers. He is so brave and strong. I am the one who needs a dose of courage and a shot of strength.

Dear Diary, 4-15

Brain Surgery. Tumor. Ventilator. Feeding Tube. Gag Reflex. How these words are so simple to type or say. The nurses and Doctors throw them at us like they mean circus, pop corn, elephant, birthday party. Not that any of them have a sense of humor but I don't think they have any idea the impact of those words on my brain. Their seeming lack of empathy is disturbing at best. The blah, blah, blah has been replaced by constant screaming in my head. I want action, I want solutions and answers. DO SOMETHING! MAKE HIM WELL!

No change! That means he hasn't died and yet, not by any stretch does it mean he is "living". At least not living the life he loved and built for his satisfaction. I wonder if he has any concept of where he is, how he is doing, what is coming his way? He growls. That sound used to mean he was upset about something simple like the dog chewed his paper. Now I imagine the worst: his euphoric state has been replaced by an intense fear that he can't communicate. Fear trapped in his throat that try as he might, he can't articulate. It comes out unfamiliar and nonproductive. I have no way to assess this new gurgle and that scares me.

No change? "God, please answer my prayer!" I don't know what my actual prayer is. I am trying to stick with "your will be done." but that isn't what my heart wants. My heart wants the Dad I had before he entered the doors of the ER. There has been a tremendous change. I just don't like it. It isn't the change I want! I know my writting sounds like a 3 year old stamping her feet and I know it's equally ineffective. That does NOT stop me from doing it. I am a child. I am an adult. I am screaming and stamping my feet through my finger tips, typing as if my fingers were on fire.

"No Change" isn't good enough for my childlike fear. I want change and I want it NOW!

Dear Friends and Family, 4-18-09

I know you think you are helping and that's why I am not going to throttle you. I know you honestly want and care about how he is doing. WIth that said, I can't help but feel as if you are doing the slow drive that one does passing the scene of an accident, craning your neck to see the carnage on the roadside.
There is no change is all I have to offer. Every time I utter "There hasn't been any change since the last time you called"....and I let my voice fade out, it forces me to consider there may never be another answer. Do you realize how harsh those words have become? I want to say, he is doing well or the Dr. is optimistic...but he isn't, and they aren't.

I don't don't know how to share how I feel about his condition without sounding like Eore (pathetic Winnie the Pooh reference). I think if you knew that I feel like I've been on the Merry-Go-Round a few to many times, you would think I was insane. I feel frustrated and defeated in my attempt to grab the brass ring that will signify either my acceptance or some progression in his health. Yet, around and around,the spinning never ending, I am getting that carnival ride stomach ache that I knew so well as a child. I go in circles making no more progress than he is.
I keep hoping you will change the subject. I want you to care about me, Understand I feel like I am drowning in medical terms, hospital smells and my own imaginings. None of which are pleasentries that I want to discuss on the phone. I want you to talk about you. It was raining today. Fitting. Even the nuetral subject of the weather is a better topic because some how the rain seems like a shared event. Not nearly as personal as the problem of "no change".

Are you the person who thinks I have the energy, peace of mind or strength to take care of you? I know you knew my Dad longer. I know he worked with you. I know you lived next door for the last 15 years. Yet, these relationships seem to have very little value to me in that this is MY DAD. If you feel bad, I do understand that, but I have one piece of advice, use any other form of support you can find, anyone other than me.

I honestly don't mean to be unkind. But you are asking a fighter who has been laid out in the ring, to the count of 8 to get up and wipe the blood out of your eyes. I can't see you for the tears and pure fear I have in my own eyes. I am black and blue from the words and reality associated with his condition.
Help may be on the way, healing may happen. In the mean time understand my anguish, understand my fear, understand my rage.

This is my dad's best friend, Lacey. I brought her to the hospital before his surgery because I wanted him to have a good visit with her before his surgery.

Dear Diary, 4-21-09

The Doctor took of the bandage that covered the incision. It's about the size of a baseball. Much larger than an orange. The staples are very much like the stitching on a baseball and I wonder how did they make such a round cut? For some reason they also shaved off his eyebrows. I am totally surprised I hadn't noticed before, but he looks even more like a child without them. Surgical persicion. "That's how" Itell myself and am hoping they used equal skill to get the whole tumor out of his head.

Dad says "hurts" often and tries to rub his head. He asked me in his rough language skills if I had a headache too? I told him I did, as I assume that misery loves company. His head has to hurt so much yet he lays on the hospital bed in critical care (more intesive than Intensive Care!) with a sweet smile on his face, not so much complaining about his head just commenting on the facts. I wish he would complain more maybe because then I would realize that he understands the urgent nature of his situation and try harder. Try harder to swallow, try harder to lift his head to the proper angle, try harder to recover. Instead, there is a sense of complacency or surrender in his lack of participation. Has he given up? Has he accepted the situation that I find so unacceptable? I want to give him my strength, my sense of fight. There is no way to tranfer these to him with the exception of encouragement.

Constant encouragement. "Good job Dad!" with a very similar tone that I used to potty train my dog. I don't have children, so I suppose that parents use the same tone of voice and reinforcement to train their children. There is a certain tone of voice that adults use to address babies and pets. That is the tone I have fallen into using with him. Seems condensending in some way. Yet, to yell or whatever hammer one could use to inspire recovery seems to be to harsh to pull out of my emotional tool belt.

I do have a headache. I do not sleep for the scary dreams that invade my subconsious. I have decided that insomnia is the theif that creeps in during the night to steal the next day's productivity. I have no ability to fight the insomnia, my brain will not stop contiplating the "what ifs" that sometimes creep and at other times bang into the walls of my head. Are there answers? I am sure there are, the ones that I come up with in the dark of night are too scary to contemplate, the early morning solutions are too outragously optimistic.

If I found a magic lamp to rub and the Genie holed up inside gave me the 3 wishes that fairytales predict, I think I would ask for the following: 1. Make my Dad well, with a pefect body. 2. Make me more reasonable and accepting. 3. More wishes. I am human after all!

Dear Diary, 4-24

There used to be a show on TV called "Let's make a Deal" with Monty Hall. The basics were you would win a prize and he would try to entice you to trade your prize in for what was behind the curtian. He would say something like "We have a prize valued at $5,000!" Carol Marole would stand invitingly by the curtian to reassure you that the prize behind the curtian was indeed better than the prize you had already won. Sometimes the prize was better, but often it was a mule with a wagonful of hay or a barnyard filled with chickens. Naturally, unless you were a farmer of some sort, these prizes were not better than the original prize you had won. I am not so much reminiscing of game shows of yesteryear, but explaining how I perceive the results of the surgery. Apparently the descion maker decided that was unseen behind curtian number 3 was better than what was already in hand.

I gave Dad a card to sign for Mom's birthday last night. He was able to get 4 letters of his signature but couldn't finish it. He seemed to withdrawl when he couldn't finish. Did I scare him? Did he simply give up and retreat into his head? I don't know what goes on inside of him. He likes to have his head rubbed and lotion put on his feet and hands. He likes to sit up in the stretch chair and be pushed around on his floor. He smiles like a child sees a puppy when some people are around and closes his eyes around others. Watching him is really the only way to gage how he is doing. I am not sure he knows the meaning of the word "no". He says "yes" to everything. I think my questions are starting to sound like nagging. I hate that, yet, as I ask questions, I am looking to see a glimpse of my pre illness dad. I think that person is gone.

He was declared incompetent yesterday. I wish I could say I didn't see that coming, but I did. I have to say that symbolically is the beginning of the end. Why if I saw it coming did it hit me so hard? My stomache seems to be flipping over and over. My body is reacting to that which my mind can't digest.

I wish I had some input to the surgerical decision. I didn't. I have come to think that "life at any cost" was the framework of the decision making. 2 months vs. 10 months seems to not be worth this struggle. The pre op Dad was participating at a much higher level. This post op Dad is pretty much just an empty shell of what he was. Now they want to start chemo and radiation. "What for? Why do this to him?" I mutter to myself when alone. How much assault can his frail body stand and I don't think he understands how disabling these chemicals will be. Could this situation get worse? "Apparently so."

The decision maker in this situation is so ill informed and making every excuse to do anything but focus on the reality. I am not asked for my opinion and have given up trying to participate on that level. I can only make the small bits of life he has more pleasant. I believe I would have said "2 months of this happy and content Dad is far better than the unknown after surgery." After all, the damage done to his brain was a result of the brain bleed. Now the damage and frailty that comes with brain surgery to remove the cancerous tumor, and the results of chemo and radiation simply draw out the process of his dying.He has stage 4 cancer, a glioblastoma. It isn't going to improve the quality of his life.

I feel bad that there was a donkey with a cart filled with hay behind the curtain and that I am not a farmer. I do not see the value of this quantity of life. Quality vs. Quantity is the question at hand. Perhaps every illness vs. cure equation should be evaluated based on what is the result? Do you keep the prize you already have or should you risk it all for what is behind the curtian?

Dear Diary, 4-25-09

THREE NUNS WERE ATTENDING A CUBS BASEBALL GAME..
THREE MEN WERE SITTING DIRECTLY BEHIND..
BECAUSE THEIR HABITS WERE PARTIALLY BLOCKING THE VIEW, THE MEN DECIDED TO BADGER THE NUNS HOPING THAT THEY'D GET ANNOYED ENOUGH TO MOVE TO ANOTHER AREA..
IN A VERY LOUD VOICE, THE FIRST GUY SAID, "I THINK I'M GOING TO MOVE TO UTAH.. THERE ARE ONLY 100 NUNS LIVING THERE.."
THEN THE SECOND GUY SPOKE UP AND SAID, "I WANT TO GO TO MONTANA.. THERE ARE ONLY 5O NUNS LIVING THERE.."
THE THIRD GUY SAID, "I WANT TO GO TO IDAHO.. THERE ARE ONLY 25 NUNS LIVING THERE.."

ONE OF THE NUNS TURNED AROUND, LOOKED AT THE MEN, AND IN A VERY SWEET AND CALM VOICE SAID,
"WHY DON'T YOU GO TO HELL .. THERE AREN'T ANY NUNS THERE!"

He has such a great sense of humor. Today he answered a question with "Is the Pope Catholic?"

As he slept today I held his hand and thought of a few of his sayings that made me smile. Here a few of them. I'm sure there will be more, but before I forget I wanted to write them down.

His take on measure twice and cut once was "Think twice, act once."

He would protest for peace. I always thought you protest war and rally for peace, but....?

"Consider the source." He would say when someone had said something unkind.

"Never expect more than shit out of an ass hole." He said this when he couldn't explain why someone had behaved poorly or he couldn't explain the "why" of the situation.

"Don't run away from, run to." Another version, "Don't leave where you are until you find a destination."

Every year he went to Ft. Benning in Columbus, Ga. We were arrested there for crossing the white line. You can't imagine how funny it felt to be arrested with your Dad!

Today I told him how proud of him I was and thanked him for teaching me how to build my character by setting the example. I don't know if I told him that before today. I hope he knew.

Dear Diary, 4-27-09

I am sitting in my dad's chair working off of his computer, that makes me emotional and leaves me feeling incomplete. I used to sit here and fix his computer problems, find the information he needed or organize his pictures. I felt needed, useful and important. Today I sit here feeling incomplete. My eyes and brain expect him to peek around the corner to ask if I am finished yet.

Intellectually I know that he will never sit here again, probably never enter this house again. Why can't I accept the situation just as it is and find peace in that? People in this part of the country are so Nordic and hearty. They accept disease and death as they would accept a greeting card or a flat tire. I seem to have an emotional rating scale that ranks degrees of happy and degrees of sad. Perhaps it is me who is unbalanced and they are normal? There is a sense of panic in my actions and thoughts similar to trying to find the right key amonst many unfamiliar keys to gain acess to a place of security and safety. Does that key exist? Is there any way to find comfort? Safety? Acceptence?

I stay positive and quiet at his bedside, rubbing lotion on his hands and feet, caressing his head and holding his hand to let him know I am there. He has been able to respond more to stimulous... but then immediately falls back with his eyes closed and his thoughts his own. They say he is making progress and I see some improvement, yet, none of his progress is strong enough to get him to walk or sit up on his own. He has used his left hand and arm to brush away an itch, is swallowing thickened liquid and shows some level of alertness.

Sitting in his chair I can see all the important things he did prior to April 9, 2009. His board room adgenda, his date book and the paperwork that he was working on. His method of organization is the pile system. No one ever understood his pile system except him. He would get very upset if you messed with his piles. He knew exactly where everything he needed was, to anyone else it was just a pile of papers. His camera sits here and I would guess as usual the chip is probably filled with pictures. I am reluctant to even turn it on or put the pictures onto his computer. Mostly because I am not sure I want to see through his eyes just yet.

When my husband died the biggest riddle was his key ring. There were so many keys that I had no idea what they opened. My key rign has always had the house key, the car key and the key to my office. Simple. Not my Jim. He must have had 25 keys on his ring. It puzzles me what part of his life did those keys unlock? I am guessing the paper piles will be the mystery my dad leaves behind. Which pile was important? Which pile did he intend to throw away? Which pile was he simply saving because it amused him? The shredder will see most of his piles as my mother takes over the chair. Paper annoys her. Paper brings me comfort. We are so different.
I do not share even the existance of this blog with her as she would not understand my need to write, my emotions or my perspective. Isn't that oddly normal?

Dear Diary, April 30, 2009

I went to help Dad get settled into the Nursing Home. I am flooded with emotion. Some how that place seems to scream, "End of the Line!" and feels like a speeding train heading nowhere. While it seems nice enough, I get a sense that this is a warehouse for the elderly, infirm and unwanted. A man as generous and outstanding like my father should never be warehoused like last years cast offs.

I'm listening to a playlist I made for him. "Someone to Watch Over Me" is playing. I am struck/shocked at how unprepared I am to tend to his needs. I'm sure that some of these feelings are the same that new parents experience as they struggle with the idealogy of how to raise their children. There seem to be a weath of information on how to give life to your children, not so much on how to usher your parent out of it. The instruction book on life doesn't address the End Game that we are all facing. Maybe because the stark, flouresent lights way Dad is facing the end of his life isn't pleasent, it's almost taboo. Unlike bringing a child into this world, which is hearlded, the death of a parent is almost hidden. Hidden in the warehouse of the old... The Nursing Home.

"Just give me one thing I can hold on to. To believe in this living is just a hard way to go." Written by John Prine. "Make me an angel" I want to be an angel, the one with all the solutions. I've managed my life by being solution oriented, not just letting the flow carry me at it's will. The lesson of Dad's passing is: I am not going to find a solution to this. Death isn't a problem that can be solved. Hanging down my head and crying isn't a solution, it isn't even an option as I am afraid if I start to cry, I won't stop.

Dear Diary, 5-01-09

Dad always said "Maybe's don't fly in_____" The blank filled in with any other month but May. May is here and I am allowing myself to think of the Maybe that exists with him and without him. Some of my Maybe's are unrealistic. Most are in fact. But I imagine and I dream.

I found the following thoughts and they bring me comfort. While they are not my own, these words have given me even more to think about.

"When I deeply contemplate the transient nature of human life, I realize that, from beginning to end, life is impermanent like an illusion. We have not yet heard of anyone who lived ten thousand years. How fleeting is a lifetime! Who in this world today can maintain a human form for even a hundred years? There is no knowing whether I will die first or others, whether death will occur today or tomorrow. We depart one after another more quickly than the dewdrops on the roots or the tips of the blades of grasses. So it is said. Hence, we may have radiant faces in the morning, but by evening we may turn into white ashes. Once the winds of impermanence have blown, our eyes are instantly closed and our breath stops forever. Then, our radiant face changes its color, and the attractive countenance like peach and plum blossoms is lost. Family and relatives will gather and grieve, but all to no avail?

Since there is nothing else that can be done, they carry the deceased out to the fields, and then what is left after the body has been cremated and has turned into the midnight smoke is just white ashes. Words fail to describe the sadness of it all.

Thus the ephemeral nature of human existence is such that death comes to young and old alike without discrimination. So we should all quickly take to heart the matter of the greatest importance of the afterlife, entrust ourselves deeply to Amida Buddha, and recite the nembutsu. "

There is some comfort in knowing that I am not the first to lose a husband, a dog, my brother, my grandmother and eventually my father. My words, the ones that bring me comfort are hell bent on describing the loss, the impact, the profound changes that each of my loved passing have made on me. The wishful, kind, phrases have left me. There is no perspective. These losses are mine and I still grieve. I wish "out of sight, out of mind" was a solution that actually worked.

Dear Diary, 05-06-09

It had occurred to me that the "collateral damage" to his mind that the brain tumor has caused is not going to come back. I guess I had hoped the surgery would actually fix him, returning him to health and soundness of mind. He would heal, do therapy, I would be supportive and just like in the movies, he would come home. What kind of daughter would I be if I couldn't hold my own in this arena? I guess I could have labled that my "sprint", my short term strategy.

Reality has set in today that this illness has turned me into an endurance runner. Today I realized that he isn't going to die at any minute, he isn't going to recover his mind, and that he could live quite a while in the nursing home. These thoughts distress me.

I do not want my dad to die, yet I can't bear to see him this way. His mind was beautiful, quick witted and detail oriented. His words were kind and thoughtful. He worked out 3 times a week. This man reduced to diapers, pureed food and random thoughts. This was not the way I conceived his death to be. In my mind, (dark and twisty that it may be...!), I assumed he would pass away quickly and with dignity. There is no dignity in the nursing home. The care of a person in his condition boils very quickly into the bare essentials: food, water, pills, elimination and sleep. The staff can keep up this routine indefinitely or for as long as his body is willing.

My heart can't seem to reconcile this new person I have to get to know and yet he is the person I have loved as my parent. In one sense I'm so disappointed and sad that he has lost those qualities that I found so attractive. I am sure some part of him exists in there. "Where are you?" I look for something in his eyes that I recognize from before but his eyes have changed. These eyes belong to someone I don't know. How could his eyes have changed?

I have to consider, research and weigh this unimaginable reality. This may be as good as it gets. His mind could stay this way. No. There has to be a strategy in here somewhere? I used to say "Don't use hope as a strategy! Make a plan!" At this moment, there is no plan I could make that would change this. With that said, I am searching for answers, something to build on. Would that be hope? Is hope the only thing left for me to lean on? This end game requires me to have the endurance of a marathon runner. Yet, I do not possess the strength of mind to consider the length of the race.

Dear Diary, 05-07-09

I wish I was feeling anything other than sad today. The Decision Maker and I are constantly at odds and the impact of those conversations leaves me empty and drained. Watching Dad's lack of progress leaves me feeling sad.

Insitictively, I want to run and hide. Be anywhere but here. AVOID is the first line of defense in my emotional arsonal. Where can I go to hide? Would being some where else ease the turmoil I feel inside? The result of running would be .....? I can't fill in the rest of that sentence.

This lack of fury is somewhat of a realief, but what it's been replaced by is not comfortable for me either. Where is the happy? Where is the laughter? Is there something wrong with me because I am seeking to be happy amongst the ruble of the situation? Surely I'm not the only one who can not survive solely on angst? Fear, anger and sad must not be sustainable emotions. The thought being even at the worst of times there must be balance. Time for a smile or a giggle. Gallow's humor and laughing in church come to mind as a proof to my theory.

There has to be a way to combine the unknown of Dad's outcome, the chores of every day life and the ability to find humor and to be social. The solution has stubbornly refused to reveal itself to me.

Dear Diary, 05-09-09

This time is filled with ups and downs. Like a wild roller coaster ride, minute by minute there is another twist or turn intertwined with ups and downs. Equally exciting or in this case disturbing, are the stomach lurches that come with a really wicked ride.

My dad saw the clock hanging on the wall. I never know if he is actually seeing with clear focus anything he is looking towards. I asked if he knew what time it was. He answered with the exact time!How exciting is that? I know it doesn't seem extraordinary but in his condition, it never occurred to me that he could tell time. I've been focusing on all the skills that he had apparently lost and lost sight of the idea that he may have retained some learned information.

My excitement is overshadowed by the rash and fever he has presented us with. I don't think he feels pain which is a blessing and at the same time a curse. He has become dehydrated and lethargic. When the nurse couldn't wake him to give him his meds my heart sunk to the bottom of my toes. After quite a bit of time had passed, he did wake up. Those uncertain minutes crept by so slowly. I could hear myself breathing, felt my heart beating and every thought in my head seemed to process as if my brain had a slow motion mode.

His lack of response made me realize with certainty that there will come a day when his not waking up will be a reality. When that time comes, will I consider it a blessing? Will I feel cheated? What I will be feeling is uncertain. At this moment I secretly pray that if he can't be returned to his life, can this odd, roller coaster timeline be shortened?

My watch stopped yesterday. I didn't notice until I wanted to take his pulse. With the wish that time could stand still, in fact go back to where we were exactly one month ago or fixed with the ease of putting in a new battery, I ask, "Does anybody really know what time it is? Does anyone really care?" Chicago had a catchy lyric..I really want to know the answers.

Dear Diary, 05-16-09

The Farrah Story was on last night. An incredibly courageous and strong woman. She calls her cancer a terrorist. A very appropriate name for the disease of cancer. Today I can't stop thinking about how brutal cancer is and how toxic the treatment can be. I also wonder why does Germany have more progressive treatment than the US? Seems that American's think we are so cutting edge, yet it is the German's who have developed far more effective treatments to attack the terrorist cells.

My dad is has been saying things like, "Fran, you know I love you. You have made these last few months so much easier. I thank you for all of your help." These words stand alone as a father would address his daughter, yet I think they have a deeper meaning to him. I think he is trying to say good bye. I told him we are praying for him and working very hard to bring him home. His response was, "you aren't praying my prayer."

This conversation breaks my heart. I'm not ready for him to give up the fight against the terrorist that has invaded his brain. He has made so much improvement these last few days. He is eating soft foods, sometimes even feeding himself, has been working with a therapist to keep his muscles toned and has even almost stood up. These are all good signs.

I have been tourtured by the thought that he may know that his body is betraying him, that his mind is in there, just not connected correctly to the communication sector, not connected to the control panel that dictates the movement of his body. If he feels trapped inside his mind, trapped inside a body that doesn't work with the ease it once did. Perhaps he thinks he has lost his value. I'm unsure. I'm reassuring. I am going to fight for him even when he can't fight this GBM terrorist.

Then again, maybe he just wants to let me know he will be alright, and wants me to accept the inevitable end? Accept this? Not yet. I can't let go yet. The terrorists CANNOT win without a fight.

Dear Diary, 05-18-09

I spent the day with Dad yesterday. He had such a good day! Visitors, gifts and lively smiles. All were appreciated and in many ways affirmed my Dad's importance to the community and the world. Every person recalled something special he had done or a project they had worked on together. His good works and compassion will out live him most importantly, may live on indefinitely. My hope is the legacy he leaves, the good works he has done, will out live the problems he has strived to correct.

I'm gentle with him. I'm caring and attentive. In no way do these small acts of kindness equal how Dad has approached the needs of others. His ability to inspire change is amazing. The people he has touched and lives he has helped mold are a testiment of his life. To his life... Which ever is proper grammar.

He gets so tired by the end of the day he starts to ramble and then I remember he is still weak and tired still waging a battle, still trying to outwit an enemy that is unseen and powerful. Does the cancer not care? Why would a beautiful mind attack itself with disregard of the outcome? Does the cancer know it's cannibalizing it's very life source? How dumb is that?

I'm so tired. I can't sleep as well as my body needs to replenish itself. The mental toll is now impacting my body. It isn't the "what if's" that keeps my mind swirling, it isn't the "today" that I am contemplating in the wee hours of the night, it's the "what if this happens to me, and the "what can I do better" that are keeping my mind from settling. Those questions ultimately are answered with "I don't know." I expect more from myself than the answer that comes around.

His radiation treatments start tomorrow. What new problems will this present? Maybe the treatment will be the gift of life, maybe the treatment will be the sword that takes his living. Once again, the roller coaster is heading up the hill, the next decent and turn are unknown.

Dear Diary 05-25-09

The Cyber Knife is a radiation treatment that uses lasers to pinpoint the site of the tumor. A mask was made of my dad's face to keep him still during the treatment and is used each time he comes. Each treatment lasts about 1.5 hours and makes him so tired.

Before the treatments started he was very lucid and conversational. His physical therapy was including walking with a walker and his wheel chair behind him. I was so excited about the walking I had tears of joy running down my face. His progress was astonishing. I think the treatments have made him go backwards. He has tried to stand up on his own, babbles about unseen things and to a degree, I think he might be hallucinating. He sleeps a lot and is very tired when awake. My hope is that after the last treatment tomorrow, he will start to emerge again.

I'm not sure what to expect from him anymore. At times he scares me. I'm once again not sure who he is and what is going on inside his head. There are times when I don't think he knows who I am ... at least not immediately. He doesn't know his days from his nights. At times he is disagreeable and terse. At times he is sweet and easy to work with. But for the most part, I can't tell which mood he is in until I'm face to face with him. I want to say that this regression has surprised me...the Dr.'s prepared me for this change so I'm not so much surprised as I am disappointed. Not in him, but in this disease. I thought we had a handle on getting better....Now I'm not so sure that he is going to have the strength to make it. I'm not sure I have what it takes to be there.

Last week I was there 10 to 15 hours a day. This week, I don't know how I will meet those time demands. I'm sore, my arms are so painful and my back is aching. I tell myself I can do this, that if he has to be there, so do I! Pep talks work to pull my mind into the game, they don't help the pain my body is feeling. Part of the pain is my own fault, as I have missed my appointments for pain management. I know I need to take care of myself so that I can take care of him. This thought does inspire me to try to reschedule the appointment, but each time I go to the Dr. I end up down on the couch with ice for 2days. I don't look forward to these appointments. Last time I went the Dr. said he was proud of me for not crying this time. Will I cry this next time?

I know this is "our" battle not just his. I hope I can give my strength to him by not letting him see my fear, my uncertainty. I wish the shadows that haunt the back of my mind would disappear. Can he see them in my eyes? I try hard to keep hiding the negative and accentuating the positive. I've got another day to practice. Another day to perfect my game. Another day to raise his spirits and give him reasons to live and excel.

Dear Diary 05 28-09

I didn't win the lottery. The car is leaking liquids. Worst of all his brain is swelling up. For the last few days we've been having conversations about his being dead. He thinks he is dead. Very odd conversation to be having. He wanted to read his obituary in the paper and was quite sure the people that he saw in the nursing home were there to view his body. At fist I was concerned, then it turned into humor. I couldn't believe he would think that he was dead yet knew he was still looking and talking to me. All seemed so surreal. At some point he will be dead. With that being said, I'm not sure I will be so cavelier.

The Decision maker is making one bad decision after another and I'm not sure what impact that is having on my dad's health. She is in total denial that she is making mistakes. To me, it is ameture hour and frustrating. I think she needs to be in control and always right, even when the toll is being paid by my dad. I wish I could get through to her. Yesterday she absolutely lost her temper yet was completely wrong in both her assumptions and actions. I have to step out of the line of fire and let her act out. I'm too tired to continue to be her punching bag.

Is there a way to beat the grim reaper? Is there a way to turn back time? Change the present? The answer to these questions is NO! I know this intellectually but it doesn't change my desire... I find ways to laugh and lighten my load...I think people think I'm crazy for showing up each day and trying to beat the fear that haunts him now. The process of dying is not one to find humor in, yet, it's too serious for me to deal with each day without finding the smallest amount of sanity in a smile or a laugh. The person that suffers most is the one who can't remove themselves from the problem to see the sunny moment, the peaceful moment, the joy that is within. I will not apologize for the giggle. I will not wipe the smile off my face. It is who I am. It is the essense of me.

Dear Diary, 06-14-09

My dad had a heart attack. The end is rushing at us so quickly. He knows, I know. We know. The final days are here. He isn't going to out run the terrorist, cancer. We lost. We lost with dignity and with spirit. Can't say we didn't try hard or that we didn't show up. The advisary was just better, faster and stronger.

Thanks for reading.
Thanks for being my friend.
Thanks for your prayers.