Day 91 - Ninety-One Days Since your Stroke

Mom, it's been 91 days since your stroke. How do I know? Scrabble reminds me every morning when I open it up. I sure do miss our games together. Remember how sometimes we would have as many as ten games going at once? More typical, of course, would be half a dozen.
  In the picture visible here, it shows 91 days ago that you made your last move. Actually, you did not make a word. You passed. You passed on three games. Why you passed I still don't know. I have this image in my mind that you had just had your stroke, and you were trying to communicate to me the best way you knew how: with your ipad, through the Scrabble app. It was by far the app you used the most. You might be playing twenty games at once all together.
  "Ruins" was the word I made 78 days ago while beside your bed at the nursing home. You had just made the word "Lass." Little did I know that would be the last word you would ever make in Scrabble. Life is strange. When I see the word "ruins", I can admit, yes, my life is in ruins without you. I seem to have lost my purpose. My whole purpose in life these last eight years has been taking care of you. Now I can no longer do that, but I will continue taking care of Nikki for you. It is hard to tell if he misses you, but whenever he is alone in the living room, I can't help but believe he is missing you. And every time I pet him, I pet him for you.
  How eerie it is now to see the word "passed." Now it takes on another meaning. You passed away on September 20th. That was Day 42 since your stroke, so I suppose that would be 49 days ago today. May you rest in peace. I still have not created a tombstone for you, but I promise that I will. I never visited Father's grave, and I don't think any of us ever did. We just do not believe he is there. We always pictured him somewhere far better. That is where I picture you, as well, but I still want to honor your grave, which is right beside by my dad's. It's hard to believe that 30 years ago I used to drive by that cemetery, never knowing that someday both my parents would be buried there. It was especially hard to imagine because in 1982 you were both still living in Illinois, and I never imagined that in 1990 the two of you would retire to Houston. Dad passed away in 1995, and you passed away in 2012.

Day 41 - Did You Mess With the Electricity?

Mom, in the last entry I already mentioned that on Day 41 after your stroke, as you were lying in bed, now sleeping (or unconscious) with the Hospice nurse by your side in your bedroom, not one but *two* transformers blew. The first one sounded like it was about six houses away. The second one was the transformer nearly in our own back yard. It is in the corner of Jim's backyard. Was that you? Were you the cause of the transformer blowing out like that? One hears all kinds of stories about how the spirits can mess with electricity. Again, I hope you were not angry.
  I did not know when you were finally sleeping that night -- and you seemed so restful-- that you would never wake up again. Dear God, did we do the right thing? Just ten hours previously you were fully alert and inquisitive about the medical truck parked on the street in front of our house. Yes, you were asleep, but the next day it would seem like you were unconscious. If we talked to you, could you hear us? The Hospice nurse said that you could, but how could she really know? But for the sake of all who visited you, I hope that you were aware of what was going on.
  Day 42 was a Thursday, September 20th. In the afternoon people started coming to see you. I wish I could list them all, but I cant. Walker was there nearly all day. Several of my sister's friends from Church were there. I don't remember if Vivian was there. In the evening, John and Debbie were there. Katie and her husband were there. They all stood around your bed and watched as you breathed heavily. Now it was plain to see that you had water in your lungs. It gurgled with your every breath. And it is precisely this that makes me question that supposed "oxygen machine" that the hospice nurses hooked up to you. It had a canister of water attached to it so that the air going into your nose was moist. This is what we were told. Mary Jo seemed pleased because your nose had been very dry, she said. But I just wonder if we were forcing water to collect in your lungs? God, I hope that is not the case, and I hope that is not the reason September 20th was your last day on this earth.
  It was about 8:45 in the evening. Most of the people who had come by to see you had left. There were only a few people still in the living room. I was with you in your bedroom with the hospice nurse, but essentially we were all alone. It was quieter. I was rubbing your left hand which was very puffed up, and I was watching you take your every breath. Then, finally, at 9:00, you took your very last breath. You breathed in, then out, and that was it. No apparent pain. No apparent fight. Your mouth remained open. The nurse felt for your pulse, and she told me that you had passed. For a few minutes I couldn't believe it, because there were still some sounds in the lungs emanating. The nurse said that was common. Then I went out to the living room, and I announced, "Mary Jo...she's gone." I wont describe all the activity afterwards. I just cant keep it all straight, and it all seems less important than the days leading up to your death. It bothered me slightly that you were not pronounced dead until about 10:00 when the official hospice nurse arrived. By midnight or so, they rolled your body out the door in a body bag. I would not see you again until September 25th at your funeral mass at Holy Family. I gave the eulogy. It was the hardest thing I had ever done in my life, apart from watching you suffer these last 42 days. Mom, I love you and will always miss you. I will write more here, but it will be less often. I am honored that you took your last breath while I was in the room with you. What we had as Mother and Son was very special, and I do not regret for a second my decision 8 years ago to come live with you.

Day 40 - We Decide to Accept You Into Hospice

Mom, I am not sure I have this day correct. There were a couple very busy days there when you were home. Day 40 would be Tuesday, the same day that Sandra came to help you. We not only had Home Health care nurse come by, but we also had a nurse come from TexanPlus, your insurance. Not only that, Tracey came. She was a representative from TexanPlus, and she sat down with Paul and me in the living room. While you were in the bedroom being looked over by the nurses, Paul and I were discussing your future. Please forgive me for the decision I had to make. We had to decide whether or not to admit you into Hospice. Originally we were going to have you transported to a facility near 59 and Highway 6. But then we decided no, we will keep you at home. It was explained to us that the minute we decided to take you into Hospice, you would be off Texan Plus and back onto Medicare. It was the law, Tracey said. I am sure that from a financial standpoint, Tracey was looking out for the interests of TexanPlus. After all, the combined cost of the last three hospital stays just during the last ten days had to be well over $80,000.
  I am ashamed to say that much of our worries were on how we could afford to take care of you. So when we heard that hospice nurses would be with you 24 hours a day, seven days a week, and it would all be covered by medicare, we all felt immense relief. Imagine that: We were relieved! It did not really sink in that you were dying. In fact, I was asking what happens after 7 days. I guess I thought this would only last seven days, and then we would be on our own again to change your diaper, etc. I remember while Tracey was there, the medical truck came with the bedside commode we had ordered for you. Tracey took one look at it and advised against it. It was unlikely you would ever need it. It still didn't sink in that you would not be alive that long. So I turned the commode away, and the driver took it back to his truck.
  Day 41 was the last day I was able to talk to you. Of course you couldn't talk back, but I knew you were listening. I had your shutters open in your bedroom so that you could look outside. Princess, our female cat, would often come into the bedroom and meow. She basically wanted me to come out of your bedroom and back into mine. Whenever Princess meowed, you would look, as if to say, "Is that Princess? Where is she?" A couple times Princess did reach up to my knee with her paws, and I think you saw her. I considered this a kind of consolation prize for you. You would never see Nikki again because he was too afraid to come into your room, but at least you would see and hear Princess one final time.
  One thing that amazes me is how well you were healing. This is why a large part of me could not believe you were dying. Remember that PIC line they put into your right bicep? That made a black and blue bruise as large as your bicep, and that was now all clear. Remember how puss was coming out of your right eye? Thanks to Mary Jo, that was all healed. In fact, the redness around your eyes had gone away. To me, this meant that you were healing. And I commented to you how well you were healing. Remember how you had dozens of black and blue marks up and down both your arms from every time the hospitals tried to draw blood? All those bruises were completely healed. If you were dying, why was your skin healing so well? You were looking much better to me, and I told you this, and I wonder if by telling you this, was I giving you false hope? Or perhaps it didn't matter. Perhaps you already knew. Perhaps you knew long before any of us.
  Then the medical truck pulled up front, and you saw it before I did. You pointed quizzically to it with your left hand. What was that truck doing in front of our house? What were they bringing? They were bringing an oxygen machine. I explained to you that you were short of breath, and that we were going to get you some oxygen to breathe. Mom, I am so sorry! I didn't know that you would soon be gone. I truly did have hope. Part of me thought that you would show those hospice people. You would live another seventy days, not just seven. You would show them what survival is all about. You were a fighter. You proved that in all those hospital stays under excruciating pain and embarrassment.
  I am not really sure when the hospice nurse arrive. I want to say it was around 1:00 in the afternoon. I forgot her name, but she was very good with you, and she stayed with you constantly. She would even hold your hand. You were, of course, moaning and groaning like you had been for the last six days. While we all thought it was pain, the hospice nurses told us, no, it's not pain. It's anxiety. So the whole course of our mission would shift now: to give you comfort. It all sounded so good. You would be less anxious, and you would be comfortable. You would be given anti-anxiety medicine as well as a little morphine. I remember John came over around 6:30, and he was downright happy. I knew he was relieved that you were getting 24-hour care. Well, so were we all. We as a family could finally relax, knowing that a huge burden had been lifted from us. I am ashamed to say that: that you were a burden. But there is no denying it. I had probably lost ten pounds from not eating, and I think Mary Jo lost about ten pounds herself. We were both running ragged these 40 days since your stroke.
  The hospice nurse would be there until 8:00 the following morning, I think. We all went to bed that night. Then something remarkable happened: the power went off! It was not just our house; it was all the houses down the block west of us. I had heard two transformers blow. That was about 9:30 I think. So, we could no longer use the oxygen machine. And since we had candles it, we could not use the emergency backup oxygen tank they brought over either. That might provoke a fire. But now you were sedated, and you were sleeping, and all of us were all so relieved that you were finally sleeping. In the last six days I don't think you slept more than 30 minutes a day. Now it makes sense that it was anxiety. I remember that same morning when I was explaining about the oxygen, that I had told you that some nurses would be coming to help calm you down. You were oddly calm the whole time I was explaining this to you. You were intensely curious, I could tell. I never once used the word "hospice" with you. I just said that they were here to calm you down. I had mentioned that you were keeping us all awake, and I will never forget how sorry you looked. I didn't mean to lay a guilt trip on you, but I could clearly see you felt bad that this was happening.
  Luckily the temperatures actually started falling. I don't remember a September night that cool in years in Houston. It was September 19th, and it reached down to about 63 degrees. I had my window open, and I was using my Xoom to write emails to John, my buddy in Illinois, and yes, I was even playing Scrabble with him. It was about 10:30 when an electrical crew came to look at the transformer box in the back corner of our neighbor's yard. This was all within thirty feet of my bedroom window, so I could see them all. The crew left and didn't come back for another 45 minutes, and then finally around midnight, the power went back on. I will always wonder if that was you, Mom. They say how spirits can control electricity. Was it you that blew the transformer? If so, was it because you were angry? God, I hope not. I'm hoping it was just a way to reach out to me. Maybe you were already in the astral world travelling to the backyard, and you wanted me to look out the window to see you.

Day 38 - Mom is Released!

Dear Mom, you were at the Sugarland hospital for four days. To their credit, they did keep you an extra day to make sure everything was okay. Originally they were going to send you home on Saturday. I didn't think you'd be coming home until Monday, but then they told us you would be released on Sunday. I rushed to the ATM to get cash for the paramedic truck. It would cost $288 for the ambulance ride home, and it would cost $305 to the hospital for your insurance co-pay. John was there to help me. Mary Jo and Paul were already home waiting for you. If I remember right, it was about 1:00 in the afternoon when we brought you back. You were very fidgety and in much distress. Whenever we asked you where you hurt, you didn't seem to know where. Also remarkable to me was when I asked you while at the hospital whether or not you remembered throwing up blood, you did not seem to remember. Your speech was worse, and you had all but given up speaking. A week earlier most of your words sounded like "kai kai kai." You would repeat that over and over as if each "kai" were a different word to you. But now I could tell that you had lost all hope, and you didn't even bother saying, "Kai." You could still say "yes" or "no", and you could still say, "I don't know", and that was about all you ever said.
  Day 40. I had arranged for a lady to help change your diaper. Her name was Sandra. She was recommended to me by the lady at the medical supply store who had an elderly father that was being cared for by Sandra three days a week. I would need Sandra on Tuesdays and Thursdays, from 9:00 AM to 12:00 noon. She was came that Tuesday, and she changed your diaper. But Deloris was also there, and I learned later from Mary Jo that they put the tube for the catheter through the top of the diaper rather than through the bottom. I had notified Home Care that you would be back home that day, and boy did you have lots of visiting nurses. Sandra was real sweet. She mainly spoke Spanish, so I acted as her translator when she needed one. You seemed to like her. Sandra made sure you got plenty of ice chips. That was about the only way we could get you to drink water. I was not happy that the hospital had released you with the urine bag and catheter, but I suppose that made for less diaper changes, so that would be okay for a while, but eventually I wanted that catheter removed. Of course that would never happen. As the day wore on, I noticed that the urine in the bag got darker and darker. When the Home nurse came to inspect you, she speculated that you might have blood in your urine. When Sandra left at her appointed time, little did I know that would be her first and last day with my mother.

Day 34 - Back to the Hospital!

Mom, Day 34 after your stroke, and after just one day at one home (barely 24 hours), the ambulance had to take you back to the hospital. The paramedics, being from Fort Bend, could only take you to an area hospital, not back to Southwest Memorial where you had your first gastroscopy procedure. That was okay with me since you did not like that doctor over there -- although I never had the sense you even remembered that she was the same doctor who spoke so horribly to you two years ago during your kidney problems. (The picture taken here was on Day 35, September 13. The very last picture that was ever taken of you alive).
  I notified Mary Jo about your being rushed to the hospital. I left home about ten minutes after the ambulance and was there in the ER. It was a much nicer ER than the one at Southwest. The first thing they did was clean you up. You had blood all over you because you had not only been throwing up blood, you were also losing it from your rectum. The process of getting cleaned up was painful for you, but it was also very cold. Why these rooms are always so cold, I don;'t know. But I made sure you got plenty of warm blankets. Then, when Mary Jo finally arrived from work, I went back home. I told Mary Jo that I would be back at 9:00 so that she could go home, get some rest, and go back to work. It was very important that she work, because if she didn't work, she didn't get paid. I was lucky, if you can call it that. I was on FMLA, so I had plenty of time to spend with you. This was not how I pictured spending it. I thought most of my time on my FMLA would be waiting on you at home while you were on your recliner in the living room watching Hardball or Last Word.
  At 9:00 I did return, and as it turned out, we were very happy that the ambulance took you to the Memorial Herman hospital in Sugarland. The ICU there was so nice. It was as nice and comfortable (for guests) as a regular room would be in most other hospitals. And everything there seemed so new. But the best thing about it of all was Angie. That was the first nurse that you had in ICU. She treated you so wonderfully, and she gave you constant attention. Now I understand that this is what ICU is supposed to be, but that is not how ICU was at the other hospital. Angie would pop in every ten minutes and check on you and talk to you sweetly. And she even changed you in a manner that didn't seem to cause you pain. Mary Jo left about ten minutes after I came. It would be decided that night if you would have your second gastroscopy procedure. Basically they go down your throat with a camera and take a look inside your stomach to see where you are bleeding from.
  At around 11:00 that night they wheeled you to surgery, which I think was on the second floor. It was only me in the waiting room. Again I was told that this could be very dangerous given the condition my mother was in. I admit that I fully expected you to die that night. I was mentally preparing myself for that, if one can actually do that. But first the doctor came out to the waiting room to talk to me, and I was not encouraged by his words. Basically he wanted to know why we had brought you to this hospital? Why not Southwest? I told him that the Paramedics would only take you to a Fort Bend county hospital, and we figured that at least both of your doctors could still have visiting rights to see you here. He then explained to me that Southwest hospital had far better equipment and that they would be more familiar with her case. As I said, I was not encouraged to hear this, and I was fully expecting you to die that night. It's a wonder I still had an appetite to find the vending machine to get one of those Texas cinnamon rolls.
  I was expecting the surgery to last over an hour, but I think the doctor was done in just 40 minutes or so. He showed me pictures of inside your stomach, and for the first time I saw the clamps from the first procedure you had on Day 30 at the Southwest hospital. He did find another area where you were bleeding, and he cauterized the area. It was too close to a major vein, so he couldn't clamp it. He seemed confident now that he found all the areas that needed fixing. You went back to your ICU room. I spent all night with you. I think Paul came around 9:00 the next morning to relieve me. That would have been Day 35, which was a Thursday. You now had another nurse, and her name was either Pat or Jan, and she was also a very good nurse, but not quite as good as Angie. But I felt you were in good hands, and now I really felt like yes, you would be surviving all this. You had been through so much, and you were still alive. What would be the point of enduring all this, if God didn't mean to keep you around for another year or two?

Day 76 - Since you Last Played Scrabble

Dear Mom, it's been 89 days since you "passed" on those three scrabble games we had going. As you know, I bought you an iPad two years ago, and it was one of my best ideas ever. Little did I know how much you would love it and use it. It was on your lap nearly all day as you sat in the recliner. You not only used it to read news, but you also got ebooks, you kept tabs on your bank accounts, and you played hundreds of games of Scrabble and Words With Friends with not only me, but with Angela, John and half dozen other freinds and family. It was a great way for me to keep tabs on you while you were at work. Not only could we use the chat feature, but as long as you were making words, I knew you were okay. When you weren't making words, I could usually guess that you were watching Morning Joe or Days of Our Lives, or napping.I look back fondly at the days I would come home from work and find it on your lap while you were nodding off for a nap.
  The reason one of these games shows "76" days is because that was on Day 13 in the nursing home when I gave you the iPad so that you could make a word. That was the day you made LASS. That was the very last word you would ever make in Scrabble.

Day 33 - You Come Home!

Mom, as hard as this is to believe, just 3 days after you were throwing up blood at the hospital, you were coming home. On Day 31, I remember, I spent all day at the hospital with you from 8 AM to 5 PM. The next day I went out and bought supplies for the hospital bed that was delivered to your room. (Your bed was moved to the dining room long before this. That's where Paul had been sleeping). One of the things I got was one of those memory foam pads because the mattress on that hospital bed was so stiff. I was so proud of myself that I had found the right size. I also got diapers and something called an "incontinence pad." This pad served a dual purpose and was very important: It not only caught any urine that might seep out of your diaper, but it also was what we would be able to hold onto in order to slide you up or down the bed. Adjusting you in all these various hospital beds was not easy. It took two people, and we would first have to lie you flat, which was a position you never liked, and usually the abrupt slide upwards was painful to you, but it was something that had to be done regularly because gravity tended to slide you downwards whenever we sat you up in bed so that you could drink water, etc.
  It was Day 33 that the ambulance brought you home. I remember the paramedics -- a man and a woman-- were very gentle with you, and very patient. I first wanted you to sit in your wheel chair. This however was too painful for you, so they put you back on the stretcher and then into your room and onto the hospital bed. We all had mixed emotions. This was one month and one day since your stroke. We were all anxious to see your spirits improve, because we felt that if you were home, you would heal faster. And we all wanted you to see Nikki, the cat that you adored so much, and the cat that adored you. Nikki used to spend hours in your lap every day when you were home during the day in your recliner watching politics on TV. But the reason we had mixed emotions is we didn't know if you were truly ready to be home, and we didn't know if we had the capability to take care of you. We wanted you home, but we also wanted what was best for you. As soon as Mary Jo got home from work, she changed your diaper. I know that wasn't easy for either one of you. It took Mary Jo about twice as long to do this as the professionals in the nursing home. Maybe three times as long. To make matters worse, you had already leaked all over the new foam memory pad that was under the sheets. I had failed to get a plastic liner for the bed, so it was my mistake. We had to remove the foam and take it outside where Paul rinsed it with the hose and set it across a couple lawn chairs to dry. It never did dry because it actually started to rain a little. I went back to the medical supply store and got another incontinence pad, because Mary Jo had to put the other one in the washing machine.
  Paul stayed up with you that night. He would sleep on your recliner, he said. He closed the door to your room because you were moaning and groaning all night. There was nothing we could do to console you. This was not the happy return home than any of us had envisioned! It must have been 2:00 when I went to check on you, and I could not believe that Paul was no where in sight. It turns out that he just couldn't endure your constant moaning, and you were embarrassing him by ripping off your clothes. I learned many days later that this was one thing that dying patients do: rip at their own clothes. I gave you some water to drink, and I went back to my bed. None of us really slept much that night. I don't think I slept more than an hour, and I don't think Mary Jo slept more than two.
  On Day 34 Vivian and Deloris came to be with you. After Deloris left around 11:00 AM, and it was just me and Vivian with you. It was around 2:00 PM that you started to throw up more blood! Again I put the head of your bed up so that you would not choke on your own blood, and I told Vivian to call 911. It was awful. When the paramedics came and removed your blankets, we could see that blood was also coming out of your diaper, so you were losing blood from both ends, this time. Obviously the patch job they did inside your stomach on Day 30, was not a very good job. The ambulance took you to Memorial Hermann Sugarland this time. The question on my mind: How much more of this trauma could you survive?
  And sadly, your cute and beloved cat, Nikki, was too afraid to step foot near your room, so you never had a chance to even catch a glimpse of him during your short 22 hour "recovery" at home.

Day 30 - One of the Worst Sights I Ever Witnessed

Mom, you had just been admitted to Memorial Hermann Southwest the day before, and you were in a room (no longer in ER), and we felt that you were getting better because you were finally getting the liquids that you needed in those IV's. You had gone 4 weeks without eating or drinking much. It was about noon when it happened. I thought you were sleeping, so I was sitting on the bench by the window with my tablet, probably ready to write an email to someone, when I heard this gurgling noise. I stood up and looked over in your direction and saw to my horror, Blood! Blood was gurgling out of your mouth, and you were lying almost flat on your back, so you were choking on your own vomit of blood. Immediately I raised your bed so that the blood would fall out of your mouth and down your chest. The blood was still coming out, and it was coming out fast. I rushed into the hallway and saw no one, so I started shouting, "Help, Help" at the top of my lungs. After shouting for help half a dozen times, I heard someone say, "Where is that coming from?" Finally nurses and professionals starting heading my way. "My mom is throwing up blood!" I told them, and they rushed to your aid.
  After about five minutes, the blood stopped coming out, but you were very pale. I will never forget the look on your face: a total look of vacancy, as if you were not even in your body. Your blood pressure fell drastically, and they brought you to ICU. In ICU they had to give you four bags of blood infusions. Gradually your blood pressure came back up. They would have to wait many hours before they would do a procedure to find out why you were throwing up blood. In the ICU I was asked questions about your DNR, which means "Do Not resuscitate." The very same Indian doctor that you had had two years previously during a kidney problem came up to me and basically told me that I should get things in order, that you would probably not survive. In order to get the procedure for putting a scope down your throat to look into your stomach, I had to call John who was vacationing somewhere near Corpus. I was amazed that the hospital just needed to talk to John to get the okay. They recorded the conversation, John and I were told. We were told that the procedure itself could kill you. But we wanted to fix you, and we knew this was the only way. Was this a mistake? Should I have just told the doctor, "No, do not give her blood. Do not give her any operations. Let my mother out of her misery." Had I said this, I am sure you would have died in just a few hours, and it may have spared you even more misery -- as hard as that is to believe.
  Well, the gastronomy procedure was a success, and they found a large hole in your stomach. To fix it they put two clamps. They also found a couple thin areas, so they prescribed some medicine which would help the lining of your stomach heal. This is when it was made painfully obvious that while you were staying at the nursing home, all the experts, and every one in your family had made a huge mistake. We should have never forced you to take your medications on an empty stomach. You weren't eating but two spoonfuls of jello a day, and here we were giving you about six different medications three times a day. There were many days you refused. I will never forget the look on your face when you refused. You were mad at all of us. You knew better than all of us, didn't you, that swallowing all this medicine, was the wrong thing to do?

Week Four - All Downhill From Here - Our Biggest Mistake of All Made Painfully Obvious

Mom, after having put together this timeline, I can now see that it was week four after your stroke that you really started to go downhill. I already mentioned that it was on Day 22 that it was obvious to me that you may have reached your plateau. God did I ever hate admitting this! Day 24 was a Sunday, and it was not a good day at all. Day 25 you barely opened your eyes all day. On Day 25 you seemed better. You were even alert during Morning Joe. During these days I spent all morning from you from 5:00 AM to about 10:30 AM. Then Paul would come, and he'd stay with you. Paul told me that you were in a wheel chair for three hours that day. Little did I know at that time that that would be the 3rd from the last time that you would be in a wheel chair.
  On Day 27 the Doctor from the nursing home came to see you at 6:00 in the morning. It was strange, I thought, that this huge nursing home only had one doctor, and he was only there two times a week, and usually he was only there a few hours on those two days. But I was grateful that he spent thirty minutes with you. But overall, the day was not a good day for you, and you did not eat much, as usual.
  Day 28 was the end of Week Four, and it was the end of your stay at the Nursing Home. (You had been admitted on Day 7, so your total days in the Home or Rehab Center was 21 days). I remember feeling so positive that this was the day you were going to see Dr. Wang. He had not had a chance to see you since your stroke, so this would be the first time. I was anxious to see how your temperament would change because I knew you really loved Dr. Wang. That appointment was for 3:00. When Transcare came with the van, we hunted around for a wheelchair. The one in your room was way too wide, but after 20 minutes of searching, someone finally found a wheel chair more appropriate. That would be the second to the last time that you would ever sit in a wheel chair again. Of course I did not know this at the time.
  At the time I was afraid that sitting would be painful for you, but I will never forget this day. I will never forget it because you were totally out of it. I had never seen you so listless. You could barely stay awake. While the Transcare man strapped you down in the back of the van, you seemed oblivious to everything that was going on. Normally you would be trying to ask questions, but not this time. Even when he gave you a blanket to keep you warm, the blanket would fall down because you were unable to hold it up. As we drove to see the doctor, during that whole 30 minutes you were sleeping in the chair. Well, I thought, that was better than being in pain.
  When I wheeled you into see the doctor, I was so grateful that the nurse was so nice to you. You did wake up, and we did try to get you to stand up on their scale, but even with the two of us, we could not do it. I had desperately wanted to know how much weight you lost after eating only about 100 or 200 calories a day for the last four weeks. But I will never know. You were sleeping even while the nurse was taking your blood pressure. When Dr Wang came in, you were still sleeping. You would wake up for brief moments when the doctor addressed you directly, and there was a flicker of recognition, but this was *not* the reunion I was expecting between doctor and patient. The doctor spent about 40 minutes with you. Mostly he was talking to me, and most of the conversation I have forgotten, but i do remember that i was seeking his advice on what to do next, because your time limit had been reached at the nursing home, and you would be coming home tomorrow -- or so I thought.
  Dr. Wang was the first person who mentioned Hospice Care. He did not want to tell me that you were dying, but I could tell that he figured you did not have much many more days on this earth alive. So I sorrowfully wheeled you back to the lobby and waited for Transcare to return. They came back quickly, and we brought you back to the nursing home. But that is when I was told that your last blood tests had come back abnormal, and that you would have to go to the hospital! They asked me which hospital I would like you to go to, and I suggested Memorial Hermann Southwest, because that is where Dr. Wang could see you, and that is where your Cardiologist could see you, and that is also where your best friend, Marian could see you. Marian, a 93 year old lady herself, lived in an assisted apartment just next door to the hospital.
  And that is how Week Five of your life started: with hospital stays and a hard fight for your survival. Your blood pressure was dangerously low. They almost took you to ICU that night, but the blood pressure came back up after running some IV's. The main thing wrong was toxic levels of Dixogin. This was one of the medications that you were getting at the nursing home -- one of the medications that you objected strongly to almost every day. Had I known how harmful all these medications would be on a nearly empty stomach, I would have insisted that they stop. You knew better than all of us. You tried not to take them, but nearly everyone involved in your care was making you take these senseless drugs. I am so sorry, Mom! This was perhaps our biggest mistake of all. Making you take drugs even while you were hardly drinking. I don't think you were drinking more than two small cups of water a day.
  But if I learned anything through this ordeal, it was that your HEART was plenty strong. As you know, you had a pacemaker installed in 2004. That is when I came to live with you. I always questioned whether you really needed that pacemaker. In my mind it was the cause of most of your ailments that would follow. But I am no doctor. It was just intuition. Your heart attack in 2004 was, after all, very minor. You didn't even know you had one. These last six weeks of your life proved to me your heart was strong. It was not your heart that ever gave out -- and there were plenty of opportunities for that to happen during very traumatic times, such as lifts into ambulance gurnies, and painful pokes to get blood, and hours and hours of getting your blood pressure readings, and painful diaper and sheet changes, and not two but three operations in your stomach. (I will get to those in more detail future entries)

Male Attendants at Nursing Home

Mom, I love you and miss you. Every day there are just little things that I want to tell you -- things that I would say if I came home from work, etc. But no longer can I share my life with you. It is painful to me that the person who loved and cared for me the most is no longer on this earth. When I went to see the dentist last week, you were not with me. You were supposed to be. It was an appointment that we had scheduled together, just like we had scheduled several other appointments together over the last couple of years. When the dentist asked me about you, I started crying. I told her the best I could that your last days on this earth were brutal. She consoled me the best she could, and she asked me if sometimes I feel your presence. "No," I admitted, "I just miss her." I feel bad that the only dream I can remember with you in it -- since your death -- is a mundane dream in which I was having a petty disagreement with you. Why couldn't the dream be more meaningful?
  But the thing I wanted to mention here and now is how sorry I am that you had to wear diapers while you were in the nursing home. I am even more sorry that some of the people that changed you were males. Granted they were gentle men and they seemed genuinely to care for you, but I just can't help feeling that it could not have been comfortable for you. Comfort is the wrong word. In the first two weeks after your stroke, you literally screamed whenever you were being changed because it meant that you had to be rolled back and forth, and even before your stroke, that would have been excruciating because of your nerve-damaged skin on your legs. Why did you have to go through this daily ordeal three or four times a day? You did not deserve any of this. But again, I am sorry. I felt hopeless then, and I feel hopeless now.

Day 9 - Sitting Up at Nursing Home

Today I have created a timeline of your final six weeks. As you know, this picture was taken on Day Nine. On Day Seven you were admitted to the Nursing Home, so this picture was taken sooner than I thought. In an earlier blog entry I made a statement that you only seemed half alert during these pictures. You sat in this wheel chair a couple hours this day, but you were anxious to get out of it. I thought you would be more comfortable in a chair.
  The question I keep asking myself is if you were already dying at this point? You weren't eating. You had probably already lost 20 pounds by this point. You were just eating a few spoonfuls a day. We will never know. I struggled with the idea of putting this picture online. I may decide to take it down, as I am not sure it honors you in the way you deserve.

Your Plateau: Perhaps August 24, 2012?

Nothing makes me weep more than to think about this: your plateau. I will be investigating this more so that I can better pinpoint the precise day you reached your plateau. As the doctors described it, this was the point at which you would improve the most. By improve, they mainly meant your speech and mobility. It was slightly before this plateau when I brought your iPad into your room. First I let you look at some of the emails you had received. You seemed to be reading them. I take that back: you were reading them. You had trouble holding the iPad, so I set it up on your snack tray with a large picture of water behind it, so that you would not have to hold it.
  It was during this time that I brought your attention to two emails that were from LegalZoom.com. One of the emails mentioned a change of Executor, and the other email mentioned a new Will. The emails were basically reminders for you to complete the process, which I later learned meant that you had to sign them. There were many days that I thought you had created your new will just two days before your stroke, but I have since learned that it was six days before your stroke. Little did I know that these documents had already arrived at the house in large white envelopes. Both Mary Jo and I thought they were some sort of junk mail, so we just set them aside for you to look at when you got back home. We had quite a pile of mail on the kitchen table for you to look at when you got home. Little did either one of us know that that day would never arrive -- meaning that you would never be well enough to sit at the kitchen table and look at your email.
  When I asked you about these emails, your eyes lit up. You wanted to tell me about this, but I could not understand what you were saying. Oddly, I also forgot about this in a few days. It just didn't seem important to me. But about two weeks later I called LegalZoom to find out more info, but they would not give me any info over the phone. I explained that you had had a stroke and were unable to tell me about the documents. But since I could not prove who I was, they could not tell me anything.
  It was not until after you died that Mary Jo opened one of those large white envelopes and saw that it was a new Will. Of course it was not a legal document because you had never had a chance to sign it. But in this new Will, you left the house to just me and Mary Jo. This was a drastic departure from your first Will of 2001 which gives the house to all four siblings. Little did I know the trouble this would soon cause. I never planned to tell John or Laura about the Will because it would only hurt them, but Mary Jo mentioned it to John, so I let John see it. John and I agreed not to show it to Laura. But as days passed after your death, it became painfully obvious to me that your last wishes *had* to be known by Laura -- even though she herself was a stroke victim just four years ago and was still having difficulties speaking.
  I think it was the next day that I opened up a few of your scrabble games on the iPad for you. I wanted to see if you could make a word or two. In a game that you were playing with Angela, you actually dragged the letters and made LA. You also pressed play. Looking at the board later, I saw that despite this being such a small word, it really was one of the best moves you could have made. In another game that you were playing with me, you made the word LASS. You pressed Play, and the word was recorded. You were growing tired at this point, so I didn't pressure you to make any more words. Little did I know that "Lass" would be the very last word in Scrabble you would ever make. Little did I know that this word would be the theme of the eulogy that I would deliver on September 25th.

What Will I Remember What Will I Forget

Mom, today I went through all the text messages that I either got or sent after your stroke on August 10th. I want to be clear in my mind on the chronology of all this. I am worried that I will forget these days, which is ironic because they are all such painful memories. Why do I want to remember the pain? You probably want me to move on and forget, but I don't yet want to forget. I know that I will, though, eventually. It bothers me that many of the days are melding into one another. For example, I do not have a clear idea of when you came home the first time after your stay in Memorial Herman Southwest. I think you were home only a day. But I will write a separate blog entry on that later.
  It bothers me to my core that your final days had to be so painful and traumatic. Of all the people to deserve such a thing, you are not. Your life has been so good. You have been a model of what a mother should be, but you have also been a model of what a woman should be. One would think, if life were fair, that after being a 24/7 nurse for my dad during his final days, that you would bank some credit in heaven and get a free pass that would say something like: "Go straight to heaven. Do not pass go. Wake up from a peaceful dream and meet your maker." But no, that certainly did not happen. One would think the last three years of your life were painful enough to meet the quota for eternal life. But then it occurred to me one morning while driving, and I almost put this in your eulogy, that maybe Angels are made every day, like new Stars, and for those Angels to be really good at what they do, they must suffer so they truly know what it is like when they continue their mission to help other souls. Yeah, you can see why I left that out in a Catholic mass, right?
  Anyway, I actually typed out all those text messages into my online notepad, complete with times and dates. I was sad that so many days were missing. I was also sad that I could not find that small spiral notebook that I kept while you were in the Nursing home and in the hospitals. I kept notes on your progress, and Paul and Mary Jo also jotted down some notes in there. It would help to clarify some things. But I know that I can always sift through my emails. I am sure I have written lots of informative emails to various good friends about what was going on.

Those First Seven Days at the Nursing Home

Mom, you were in the nursing home 21 or 22 days. We were told that TexanPlus insurance would only pay for 20 days. Every day after that would be 150 dollars. We were so concerned about money because none of us had much money. My retirement money would be drained away in just a few months, if you had to stay there longer. This is only one reason we wanted you out of there in 20 days. And for the first week, it sure looked like this would be an attainable target. You were getting better every day. You were not eating much, but you were getting better at talking, and you were getting physical therapy and some days you sat up in bed. I have a picture of one of those times. I look at that picture now, and I see that you were only "half there" mentally. You definitely were not as happy to be sitting up as I was to see you sitting up.
  It was a few weeks later that I was told by a hospice nurse that one of the signs that a person was dying was that she would not be interested in eating. So I am wondering, were you already dying then, and no one told us? Or were you dying, and no one knew? Your vital signs were good, we were told. Your heart was fine, and your blood pressure was not too low. So I am tempted to think that most people did not know you were dying, but I think your will to live just wasn't there. Communicating was so important to you, and you could no longer do that. Yes, your speech was getting better, but it would only be phrases, such as, "I don't know why..." and the rest would be missing. The speech therapis told us that you were one of his best patients. He told us that after you were at the nursing home about seven days. You were getting better everyday, and this gave all of us much hope. I was still working that first week you were in the nursing home, but I had applied for an FMLA that would soon take effect. I will always remember foindly how I would be at the nursing home at 5:00 in the morning, bringing you donut holes, and turning on Morning Joe, your favorite program. You would only eat half of one donut hole most of those mornings, but at least it was something. It always seemed to be something you wanted to try to eat, at least. You would pay some attention to Morning Joe, but it was hard to say how much of it you were listening to. Most of my time was trying to figure out why you were in so much pain. You basically were miserable. About the only thing I knew to ask you was, "Is it your back?" Or, "Do you want me to raise your head a little?" Or, "Is it your right hip that is hurting" Or, "Is it your right leg hurting." Many times you would simply answer, "I don't know." Either you didn't know what was hurting you, or you didn't know how I could help you.
  During those first seven days at the nursing home, I would leave around 6:00 in the morning. Sometimes I would tell you I was leaving. Other times I wouldn't tell you if it looked like you were getting some peaceful sleep. But one thing that I shall always remember is how you always seemed happy to see me in the morning. I was the first familiar face you saw every morning, and I was the last familiar face you saw every evening.
  After work, I would go home and rest a little. I had peace of mind knowing that Paul would be with you most of the day, usually from 10:00 AM to about 4:00 PM. We are all so thankful that Paul was able to be there for you. Then Mary Jo would go see you straight from work, so she would be there about 4:30. Then John would get there about 6:30. Then I would get there at 7:30, and I would stay until 9:30. This was the routine for most of the 21 days you were at the nursing home.