Life and Death

Life and Death

As I sit here mid April 2011, listening to sad songs and crying, I think back to the whorl wind of the last couple months. It is a blur at the same time it is like it all moved in slow motion and I can remember every moment, at least every moment concerning my dad. It started the end of January, my dad had been telling me he had the flu that was going around, couldn’t keep anything in him. He had called 911 one day and they came, told him he had the flu get lots of fluids and rest, in the ER they would just tell him the same thing and send him home.

Then one day the Saturday before superbowl Sunday, I called him because he hadn’t called me. He said he needed to go to the other phone, when he called me back he said he had fallen, I asked if he was hurt he said he didn’t think so, I said any blood he said no, I said hang up and call 911. I waited a while and called the hospital and asked for the ER, talked to a nurse that said they were still checking him out and would call me back. I didn’t hear back so I called again, she said they had transferred him to another area because they were admitting him because they thought he had a heart attack (I knew this was not the case, but a reason to admit him). I decided not to call again it was late by this time after 10 and I was happy he was in a safe place and I could go to sleep. My brother Patrick was out of the country and knew he would not get emails or anything so wrote an email to just my brother Robert The next morning I called and asked for the nurses station but they transferred me to him instead, he couldn’t hear me, he kept yelling, is this Bob is this Amy…they think I had a heart attack. So I hung up and called back and asked for the nurse station again. She had to go ask him if she could talk to me. So he knew it was me…I was checking up on him. She said his enzymes were raised but she agreed with me she didn’t think he had a heart attack, just the stress of it all. She said his blood count was low and they were going to check him for bleeding, they were going to schedule an upper GI. At this point the exact days are a little confusing, but I think it was Wednesday morning at 3 am when I got a call asking me how they could get a hold of the POA, I said the first POA is my brother, Patrick I am the second I can give permission for anything needed. They needed to give him blood, I said of course and asked why he couldn’t give permission, well they weren’t sure why he was this way, the blood loss or the ambian they had given him but he was in England at the moment. I called the hospital twice a day, morning and evening, sometimes got the same nurse who knew she could talk to me and sometimes a new one who would go ask him first, but no matter what I always told them to let him know I called. I was able to talk to him once where he could hear me. They did the upper GI and it was a bleeding ulcer, and they decided to treat with meds. They said they were going to send him to rehab once his blood count came up and things looked better. I had told them please let me know, well all of a sudden I call and they are saying it is that day…thought there was a few more days, never heard from discharge nurse/social worker, but I was given the number and name of the nurse at the rehab that would be accepting him. During all of this I was in constant contact with my dad’s good friend Bob. Bob was a volunteer at the church that would visit him once a week but became more then someone who just visited, he became a friend.

So they moved him to rehab, I understand it was a nice place, I was able to talk to dad there easier, he could hear me on the phone, but like usual I called daily (now just once a day) to check on him. Then of course out of no where….he is going home. I was worried, however I knew he had Bob and his neighbor had said he would give him rides to dr’s. I also found out that they had an nurses aid 3 times a week and a meds nurse once a week visiting. The other plus is now I could talk to him…..

Sitting here writing this, I want to call him, hear his voice and ask him questions so I get it all correct.

Ok so back to the story….he was home for about a week and a half maybe two weeks, in that that time he saw his regular dr and the dr that did the upper gi…one of the dr’s said he might have pre-cancer in his throat (when he fist told me he said cancer). Now by this time it was March, and he was upset, very upset that he was going to be sick for my birthday, that is all he kept telling me and his friend Bob. He kept telling me he was sorry. I said don’t worry about it. By this time ….was back in the country and we talked via phone and email I believe. I updated him on everything with dad he said he can take over anything I need but at this point he believes that one person staying in contact with dr’s and what have you was best not to put pressure on me but he was there. We also discussed looking into a place for dad to move to. I suggested the new VA assisted living place and started researching it. The big thing was he had to be a CA resident, but the lady there said he just needs a utility bill with his name. So I got the paper work and I told the boys I would do the dirty work, I was going to throw down the guilt card, you don’t want me to worry about you, you will agree to this you have no choice dad. I went over my speech again and again.

A few nights later (and at this point not sure what day but I think it was the 12th for some reason I think it was a Saturday), got a call from Bob, dad had fallen again and was being admitted into the hospital again.

This time I was told they would not discharge him unless he had full time care, I told them we were making a plan. Well they discovered he was still bleeding, and talked of surgery, the report I got from one nurse was the he would not do the surgery unless one of his kids was there, the dr said he told him he would not do it unless Amy was there. So the dr and I talked about the surgery. He had explained the two options to dad, laporscopicly (which with dad’s hearing it was orthoscopicly) or by opening him up and that would be the last resort and much harder recovery. So no one was sure when they were going to do it, but they said the end of the week. I did everything I had to at work, worked my butt off. Thursday morning I got on an airplane to AZ. I estimated I would be at his side by around 2, I had let Bob know and he told dad. I got the shuttle to dad’s and then “stole” his car (which I later found out was not registered or insured because both had expired only days earlier).

Now let me go back sort of or a side note…remember me saying dad was upset about it being my birthday, well this was the 17the of March at this point, and my birthday is the 20th.

Ok back to AZ…I have his car and this hospital is easy to get to, two streets to turn onto. Well I go in the main entrance and they say the east entrance, so I go outside and get the golf cart shuttle (they hold about 6 people) to the east entrance. I go upstairs and find his room I walk in and I presume it is Bob and his wife standing there, we introduce. well we know each other and say hello and hug each other, Bob tells me they had gotten there just about 10 minutes earlier and woke dad and his response was “oh not who I expected”, I was about 30 minutes later then I expected. But he really didn’t notice, he was just happy to see me. Well the nurse had come back with the paperwork for him to sign. He and I sat for a moment and talked, he said to me “I figure things are going to change” I said “we have already discussed this, and I think we know where we want to get you into, the VA in ventura but you have to have proof of residency”, he said he still had paperwork from CA…wow that was easy.

So I told him I was staying at a hotel and wanted to go check in, it was down Bell and I had his car, he expected as much. He asked why I wasn’t staying at his place I said I needed wireless internet, he warned me to be careful of the speed on Bell road…so I said I would be back, needed to check into hotel and eat. Well it was spring training time and all the close hotels were booked or VERY expensive so this was quite a ways down, about 30 minutes. Went down was told room would be ready in about 10 minutes so I drove down the road to get something to eat…well it was a long 10 minutes more like 40 minutes. So I go back to the hospital and just sit there relaxing for a while. As we talked he kept asking me if I knew what to do if something happened to dad. I would say yes and he asked again. I finally said I know I get a new TV (I knew what he meant but had to make us both smile) Talked to him when he woke and about 6 decided I needed to head back to the hotel and relax for the night and told him I would be there in the morning.

Went back to the hotel, got a soda and the code for the wireless and got on fb and sent update email to the boys. So tired, but not the best hotel, and not the quietest either. I hardly slept all noise.

Got up showered and got dressed, drove through a fast food to get something to eat and went to the hospital, no idea still what time the surgery will be. So I sat there, waiting. I made a quick trip over to his house to look around and just take a minute. Went back and was told about noon. So I waited and he slept. I had my knitting with me, wasn’t really getting anything done…but its ok. The nurse comes in and gives him a pint of blood, now the last stay in the hospital he had 7 …this time I think he had only had 3 so far. So transport comes in and they have to be careful because they have to make sure the IV’s are in order…..this kid was nice and was good at what he did making people comfortable, I followed. They took us to pre-op, I figured we would be there alone for every, but it was only a few minutes before someone appeared, a nurse, who took me aside to tell me they were going to open him up, that’s why the blood his blood count had dropped and they needed to open him up but the dr would come in and explain it all to me and dad, but she didn’t want me to be startled by the news. This was a small room, now there is a nurse, another person prepping him and the anesthesiologist. The one person is trying to put in an IV and she is not doing good…dad has been poked and prodded a lot…he looks at her and says…you aren’t a good poke…I say you have been poked so much you would think you were on FB…everyone but dad got that one. The anesthesiologist kept trying to figure out who dad looked like..I said Cornel Sanders when he has his goatee…he said no Mark Twain…yeah with no goatee and the weight loss…so he was going to tell everyone he worked on Mark Twain. So the Dr came in to tell dad..with his A team …he had interns that followed him around and dad called them the A team. He explained to dad that they were going to open him up and why. I think back now and even though he said it was fine and he understood I could see his face now he was scared. The anestieialogist and I talked about his history with this and how he had problems coming out of it, I told the story of his by-pass. The dr told us from recovery instead of a room he would go to ICU because they anticipate him having some breathing problems.

So I said goodbye told him I loved him…now I had just looked at his name on the screen there and said something about middle names, asked what his son’s middle name was, figured he knew I was talking about the son that shared his name…but he went on about Robert and on, the last person he talked to me about was Robert I did hear his voice again but it wasn’t him, I will explain more later. So as I left and they walked me to the waiting room area I can hear him talking to the people there about Robert and it made me smile a little. I just remember I kept thinking this is it, he isn’t going to make it through this. I check in at the desk and decided I would go get something to eat. Got the shuttle to the east end, cried as I got in the car a little and drove to fast food to get something small. Went by his place and then back to the hospital to sit in the waiting room and watch the screen. Dad’s minister had come by while I was gone and then showed up while I was sitting there. He didn’t even know dad was there, communication problem he figures he found out the assistant minister had not told him. So I knitted and sat there. Then I decided I couldn’t sit there I had to move and just as I was about to get up and walk the stairs here come the A team…dr says he did good and will be in recovery for a while and then in ICU and I can see him then. Just as the dr leave the anestiaslogist comes around the corner, now I have never had that, but he wanted to let me know dad did good. They said it would be a while before he was in ICU and I could go get something to eat. Well I called Bob to let him know, he said come over have a glass of wine and maybe join them for pizza. I did, it was nice to sit and talk to him and his wife who had spent a lot of time getting to know dad. He joked that he knew more then I did about me…well after Pizza I went back to the hospital and they were just moving him to ICU told me where to go and I headed there, I went into the waiting room and I just couldn’t sit there, I thought I need to check in, well from where I stood I could see dad’s room and them trying to settle him in…a male nurse askes me who I am there for and I say Jack McGaw…now I am a little tired and he says McGaw, well I think he mispRobertounces it and I correct him and he said something back to me like he thought that is what he said…anyway he asks me if I can help settle him down because he is real restless….well this is what happens to dad when he comes out of it. So I go in there tell him to settle down it will be ok..he is restrained because he keeps trying to take the drainage tube out of his nose…now these words I hear that night are the last words he speaks to me. He keeps saying…damit people don’t you understand what I am saying…and quit telling me that (when I tell him to settle down). Now the damit comment, never heard him say before. So anyway, I head to the hotel for the night, get a soda, take a bath (OMG a bubble bath..), log onto my computer and relax. Now remember what time my phone rang about the blood…well 3 am my phone rings, it’s the nurse they need to put him on a ventilator temporally and was told it was only temp. So I said of course and tried to go back to sleep. Got up the next morning, Saturday morning, decided I would get donuts for myself and the staff….got there to see him semi sedated and still restrained, he keeps trying to pull the vent and tubes out. So I spent the day sitting there next to his bed on the computer chatting with people on FB…trying to keep myself busy, and playing the up and down game with dad. He would wake up make some noise I would get up and check on him…the nurse would come in check everything, clean out his mouth, reposition him, he would scoot back down where he was…I would tell him the vent was temp and that everything will be fine and sit back down. The alarms on his machines would go off, she would check it and say it was the way his arm was positioned. I took a small break to get lunch from the cafeteria…but that was my day till about 7 then headed back to the hotel, told him I would be back the next day. Now the dammit comment…as I came back from the cafeteria there was someone in his room I didn’t recognize from behind…well it was the surgeon. I told him how dad was when he was coming out of anesthesia and the comment about damit people, he looked a little afraid, (he only had one intern, who was holding in laughter) he said oh no…I say that in the operating room all the time…ooopps…I thought it was funny.

So Sunday morning yes my birthday, as I am in the shower I go into a panic, thinking OMG they can’t tell him it’s the 20th of March, so I call the nurse the minute I get out of the shower, I tell her no matter what do NOT tell him it is the 20th of march those tears will become tears of sadness instead of pain. She said this is a significant date in his life…I said yes and did NOT elaborate. Well right after I finished getting dressed my phone rang is was Robert wow he has never called me on my bday that I can remember, so me and my brother talked he said he was calling to say happy birthday and see how things were going. We talked about what had happened about the car, that when we move dad I will take the car, how the house looks and just how dad was doing. It made me so happy, it made me believe he really cared about dad.

So back to his bedside after driving through a fast food place for food. Checked out of the hotel and took my luggage to his house and then to the hospital. Set up my computer at the table…and a new nurse. This nurse changed the thing on his arm so it doesn’t go off every few minutes. We talked on and off….one time she and I are standing at the end of his bed and she asks what is the 20th, I mouth my birthday…she mouths happy birthday, I say thanks and explain that he was upset at the thought of being sick on that day and this would just upset him. The game continues…he rustles I get up tell him its ok and sit down. I would always ask if any pain and sometimes he would do nothing other times he would nod no. Well one time I went over and asked if in an pain, he nodded yes…so I told him dad I am going to go down a list and I want clear answers….does you legs hurt, he shakes his head no….does your back hurt, he shakes his head no…does your stomach hurt…he shakes his head no…. does your head hurt, he shakes his head no…are you just being ornery, he gave a clear big yes nodd…I laughed and told him I loved him and I was going to sit down and he needs to rest.

Well I knew I needed to leave at 3 to catch my shuttle coming to my dad’s house. So a few minutes before I pack up my stuff…walk over to the side of his bed and wake him, I wake him enough so that I am sure he is aware of what I am saying and looking at me. I tell him, dad I have to go, I have to go catch my plane and go home to Jennifer. He looks at me a tear rolls down his check, I say dad’s its going to be ok, the tube will be out soon and you will be fine, I love you dad but I have to go. He looks at me and mouths “don’t go”…I say dad please don’t do that to me, I have to go, that isn’t fair dad don’t do that to me, I love you and I have to go, I kiss him on his forehead and I leave…I go straight to the nurse sitting outside his room and I tell her he is going to need her and going to need some sedation or something he is going to be upset, I tell her I am leaving and I told him, she turns around and he is rustling more then ever, she said you go I will take care of him, he will be fine, I walk real fast as the tears start. I just kept saying don’t do this to me dad….Well I get back to his house, and get ready for the shuttle.

Now I am not going to go into my adventures of trying to get home. But lets just say it was an adventure.

So this is Sunday the 20th, and I remember sitting there in the shuttle on the drive home, watching his clock hit 12:01 and saying yes…my birthday is over, my dad is still alive all is well. I really thought that as soon as I got on that plane he was going to leave us.

So back to the routine…calling in the morning, yes he is the same a resting call in the evening same thing, except Monday night they tell me they have removed the vent around I think 4. Next morning, he is doing fine. Then my phone goes dead around 3 Tuesday, I plug it in but missed a call from the nurses…an urgent call that my phone doesn’t tell me about until about 4…I listen to the message that says to call them right away. OMG no…I am sitting in my car crying by myself because I had just gotten in a big nock down drag out with my daughter and had to just walk out of the house. I call them; they say they have to put him back on the vent again, but again just temporary. So I go home and send messages to my brothers, Now my brother Patrick is out of town he had decided to go to Florida for spring training. He says he will call me when he gets home Thursday but to keep him posted. He has Internet on and off. I am keeping them both updates all the time. Wednesday the usual…call in the morning, the same call in the evening and the male nurse tells me that dad doesn’t look scared anymore, he says he looks angry. He also said they have unrestrained him but they are keeping him more sedated and taken his hearing aid out because it was buzzing. I told him to put a battery in it (there are only three packs there) and put it back in him. He said dad isn’t responding much to him. So Thursday afternoon/morning I get a call from the nurse telling me that a dr wants to talk to me because they want to do a tracheotomy. OMG, yes yes of course do anything you can. Then I get home and I get a call from dad’s friend Bob, he wants me to talk to his wife, the nurse had told him what we were doing. She asked me if I understood what it means, yeah I think I do she explained the care it would take and other things if he would ever get off it. She also said and you are aware of your dad’s wishes. OMG yes I am no machines. Man do I need my brothers. Well I had sent them emails about the treach, and even texts…I am sitting there and my phone wrings and it is Patrick perfect timing.

So we talked. I told him they weren’t going to do the procedure till Friday afternoon sometime, he had questions and I am sure the dr told me some of this but I don’t remember and I wrote down what I could, I mean I was at work and went out side to take the call and it even dropped the call. So I called first thing in the morning and talked to the dr, asked the questions and called Patrick back. We talked and decided NO even though it is the question of is this necessary or is this machines we decided no, also a question of quality of life. I called the nurse back and told him no. I also told him you want dad to respond (no response at all, won’t cooperate, won’t do anything for him) you tell him his kids are taking care of his wishes they just need to make sure there are some things in place first…he told dad, and dad responded…he nodded…I told the nurse not only are we not doing the treach we are going to take him off the vent all together soon we just need to talk and figure things out. Now I told them I think three times that we are going to unhook him, when I called to say no, when they called back at 11 to double check (I had….on my office phone and the nurse on my cell phone and my brother heard me) So that night I call to check on him, and the nurse said dad responded to what I told him to tell dad. I tell him again we are going to undo the vent he says you have a pressure mask if you want…OMG no not another option. So Saturday afternoon I talk to Patrick again tell him that and he says I think we just need to do it. Now neither of us made these decisions lightly, we googled we talked to each other, Patrick asked me what I wanted to do, I said crawl into a corner, he said no decision is still a decision. So Saturday he said why are we waiting till Monday…I said I don’t know but not tonight, I don’t want that 3 am call…how about in the morning after my daughter goes to work. Agreed.

Now I was supposed to go to a birthday party this day and texted them to say I couldn’t and what was happening, this was with my second family….they were so worried about me all day they were texting and checking on me all day.

So 10 am Sunday March 27th I call, it is one of the regular nurses he has had. I tell her we want to unhook the vent. She tells me what we need to do now….crap….ok first she has to get a doctor to sign orders (makes sense), and she needs all the dr’s on the case to sign off…really…and we need to set up hospice…OMG why didn’t they tell me this before, I would have done that yesterday. So she will have his social worker on his case call me in a few minutes. So she calls and tells me of two that are real close, across the street, I pick one, and she said they would call me. I am thinking OMG this is going to take them days to call me. I call Patrick and let him know he says the same thing, why couldn’t they have told me before. So they call me in about an hr, and I try to conference in Patrick it took maybe 10 minutes but all were patient with me. We ask questions he answers. Pretty much what it is they have to email me paper work (after the admin person calls me, hope that isn’t long), they will send it to hospital, after they received it they will unhook dad and once he is stable for an hr they will transfer him. This is because one they don’t know how long he will last, and two they can do pain management better then hospital. After we hang up Patrick calls me back I told him I took notes he said he did the same thing, and we are both fine with all of it. So the admin lady calls me, by this time I am getting geddy, and I just talk and talk to her I don’t remember exactly about what, but she said that is what I am here for. She emails me the paperwork I print it sign it and scan it to email back. I called dad’s nurse back and told her where we are at, she said it still might be a while because they have to wait until hospice says they have a bed and everything ok. I told her I want to talk to him before or after they take it out. She told me that she wants me to talk to him after, she wants me to talk him through it, through passing on, and she believed he would not last the hr for hospice. So I waited for the phone call. Prepared myself, went over what I was going to say….hoping I would not break down.

I think it was 4:30 when she called me, she said she had removed the vent and was going to transfer me to his room, she picked up his phone and I yelled left ear the left ear, I heard her say to me the left ear.

She put the phone next to his ear, I said hi dad, I love you. We had them take out the vent and you off the machines; we are doing as you wished. It is ok dad, it is ok now, you can go be with mom and Grammy, and your brothers are waiting for you. I tell him its ok, I will be ok not to worry about me, the boys will take care of me, I will be fine. It is ok …I kept saying this over and over again. I sang amazing grace to him, then I told him I was sorry that I only knew the first verse (it bugged him when people only knew the first one), the I wanted to sing louder so I decided I would go sit in the car. I went and sat in the car, for just over 45 minutes, I would tell him I loved him, that it was ok to go be with mom and Grammy and they were waiting for him with his brothers. I would sing amazing grace as loud as I could. I would just keep repeating the same things again and again. I could hear him breathing, struggling, short shallow wet breaths, I could hear the nurse come suction him out. I only started to cry once, pulled myself together and continued. After about 45 minutes I heard nothing, no breathing nothing…I sat there for what seemed like for EVER, I think it was maybe a minutes. I hung up and called back to the nurses station and told them I need Lisa this is Amy, she will know. She picked up the phone and said he still has a heartbeat it will only be a few more minutes and she will call me back. I think it was about 15- 20 minutes later about 5:55 she called me and said he passed at 5:45. I told her thank you and she asked where he should go I said Science care she said she would call them. I hung up and dialed Patrick I told him he was gone, he said wow that was fast, I said yes for it being such a long day it was fast. I asked him if he wanted to call Robert or if I should he said it didn’t matter he was eating dinner, I said you eat I will call him. I called him and I could tell he was upset, of course. He was surprised it was so fast, I think he thought he would have time to go se dad. So there we are, the three kids fatherless Sunday March 27th at 5:45 pst. I sat there, I don’t think I cried yet, can’t really remember.

I sent a text to my friends at the party to let them know and within seconds I got a text from someone else at the party saying how are you. I told them and they hadn’t even gotten the msg from the person I texted.

Yes this is not the end of my story….but this is the end of this part of my story. The adventures to follow will be another post.