January 29, 2013, day 28

This is the second day I haven't seen Dad. Today I had to take Mom to a Doctors appointment and pick up my Mom's sister, my Aunt Mel at the airport. She has come to stay with us for three weeks and give me a little bit of a break. It seems strangely odd to not see Dad, despite the fact that while living here I have not been here every day and have gone days without seeing either of my parents. Heck, up until these last two years, I haven't lived with my parents since before I left for college. Why all of a sudden would I be upset at not seeing Dad for two days in a row? Because he had a stroke? Because he was seemingly incapacitated? Honestly, it was because over the last couple of years Dad had become one of my best friends. He was the one constant I had in an otherwise tumultuous few years.
I remember the last time I moved out of state. By that point, in living with them, we had gotten into a routine where I would call sometimes during the day and ask what we were having for dinner, because Dad loved to cook. Abosultely loved to cook. However, he HAD to follow a recipe to its exactness, something I found so very humorous, because I was the complete opposite. If the box of pasta said 10-12 minutes until it's done, sure enough the timer went on for 10 minutes so he could then check it. We would sit around and plan out meals days before. PJ thought we were nuts, but it was something we had in common and something we loved to talk about.
When I was ready to move, I remember Dad and I going out and buying a webcam so we could webchat when I was away. I showed him how to use it and we did a couple of test chats using Skype to make sure he got the hang of it. The first day I drove I left on a Saturday night around 4pm and drove until four or five pm the next day. I had made it to Illinois from Maine (and yes I am a ween bit insane). It was early August. The sun was still out and it was warm. My dog Loki and I checked into the hotel and I was unwinding in the room, playing on my computer, when all of a sudden Skype was calling me. It was my parents. I answered and there they were! It was so good to see them, even though I had just left, even though this wasn't my first rodeo in leaving them. Dad impressed me because he did this on his own. He didn't get into computers until only about four years ago and in that time he had defintely come a long way and picked up alot. You could teach on old dog a new trick! We chatted about the weather, my travels during the day and the fact it was light where I was and dark where they were already. Then my Dad, smiling, asked me, "Don't you want to know what we had for dinner?" I laughed so long and hard at that and it made me smile. It was like I hadn't left even though I had.
This recent memory sticks out in my mind so distinctly as something to treasure and I do so much so.
Below is a photo of Dad when he was just a kid. He's the one on the right. I look forward to seeing him tomorrow. That is all for the night dear readers.

January 28, 2013, day 27

Stopped by the hospital today. Dad was not in his room. I found out they had just taken him to vascular care at the hospital for the second body scan in under a week checking for potential blood clots. It was the first day since the stroke I didn't see him and I missed him. However, Friday afternoon I get to sit in on the three therapies he's in right now, Physical, Occupational and Speech. I'm excited to see how he's progressing and to learn the different ways they are helping him to re-learn and regain as much of the independence he had before the stroke. That is all I have for today. It has been a long day. Tomorrow will be here before we know it.  

The new normal

This coming Wednesday will be four weeks since Dad’s stroke. One moment I can't believe what date it is, it's flown by so quickly, the next I feel as if everything has been moving at a snails pace. And this is only the beginning too. This is the new norm, for now. It will change again and again, of that I'm sure.
Dad began rehab in Bangor but within a week complained of a headache. Up until this complaint, he had begun to move his right thumb, index and middle finger slightly and his right leg a little. The same nerve connects our thumbs, index and middle finger, so that is one of the reasons why he was able to move those. I stopped by the hospital as I had been every night after work and walked in to find the Nurse Practitioner talking to Dad. They were moving Dad to the main part of the hospital because the CT scan ordered after the headache revealed two bleeding spots on the brain, one small, the other more substantial in size. If there was some good part of this news, it was that the bleeding was occurring over the spot of the initial stroke. He was having a mini hemorrhaging stroke. I stood in his room, watching as a series of Doctors came and went, Hospitalists introducing themselves asking Dad if something happened did he want them to perform CPR, rehab physicians making quick assessments about his physical ailments, nurses prepping him and his few belongings to be moved. I left the hospital that night not knowing quite what to feel. Just when we were all beginning to settle into this new routine, the complete darkness and unknown was back again in full force.
Dad stayed on what's called Grant 5 (fifth floor in the Grant tower of the hospital) for just over a week. Among other things Grant 5 is, it is also the stroke floor and I knew when he was being moved from rehab that’s where he was going. I work for the corporate office of the hospital, located across the Penobscot River in Brewer Maine and as a result I’m quite familiar with different areas of the hospital. They moved him and monitored him closely and that was all they could do. Dad’s body needed to make the bleeding stop and that was the hardest part to wait for. My good friend Lindsay used to work on that floor and so not only did she know everyone there, she would also go and check on him. It gave me great comfort when I found out her friend Jeanette, who I've hung out with before, was going to be Dad's nurse one particular night. Jeanette even made a point to call me that night and assure me she was going to take really good care of Dad and that he was a sweetheart and adorable.  
The day I found out Jeanette was going to be Dad's nurse was also the day he was approved for mechanical eating with thickened liquids! I am not going to lie about how pleased I was to hear this. It is going to be one of a million things I’m sure I will look back on knowing it would happen. Within days he was approved for just mechanical supervised eating, no more thickened liquids. The thickened liquids were so something like plain water wouldn’t just slide down his throat, and perhaps go into his lungs causing him to aspirate. From the look on Dad’s face when drinking these liquids, he was not a fan. Mechanical eating is mushy food, yet that's really not quite it. The proteins are typically a loosely chopped consistency, usually with some kind of thick gravy to mix in, just to keep everything moist and, well, thick. For me the fact that Dad could eat now was huge. You see, one of the only things Dad ever spent his money on was going out to eat. It was the one luxury he allowed himself and all who would join him. As far back as I can remember, we, as a family, went out to eat. I couldn't even begin to tell you the frequency of this, but it was enough times that I knew it to be part of my childhood and adulthood anytime I was around Dad. It was something that PJ and I had in common with our father and as a result became like our father in this respect. We all loved to go out eat, drink (when we were of age) and have a good time. With him being able to eat I knew it was just a matter of time before he would be eating one of his favorites again, a good medium rare steak.
The aphasia was still effecting his speech and he was inconsistent in his yes’s and no’s. For example, he would nod his head and say no or shake his head and say yes. PJ tried to get him to hum a song, after reading about aphasiacs who can’t speak but can sing words and phrases. PJ did this by humming a tune himself in an attempt to prompt Dad to try this and ended up instead just making Dad laugh, which is never a bad thing! Dad tries very hard to speak and will begin a sentence with “What..” then he pauses. You can tell he’s concentrating so hard but the words are just not coming out yet. Most often when this happens, he will then just shake his head in a humorous manner and mumble some jibberish, to which I say “You still speaking French eh?”
After just over a week on Grant 5, Dad was approved to go back to rehab. Dad had a mustache and in the almost four weeks since the stroke, not only did his mustache become a little overgrown, he had only been shaved once so he was growing a white beard and it was driving him batty. The one afternoon PJ and Mom went to go visit him, PJ went out to the store, bought a beard trimmer and with dad’s approval, shaved off the beard and mustache. All of a sudden my 68 year old father looked so much younger! When I saw him yesterday afternoon I shaved him and asked if he wanted to grow the mustache back. He said yes. I told him by the time it comes in enough for it to be trimmed, he will be able to do it himself.
The chaos of the last 2 weeks, the ups and downs, the waiting and worrying, the laughes and progress are all part of the new norm for now.     

7 days

Sunset from Maine Medical  1/3/2013

Dad stayed at Maine Medical for 7 days. For 7 days we all travelled down to Portland to see him. There were a couple of days PJ couldn’t make it because of prior commitments, there was a day Mom needed a break for herself and stayed home. I had to go. Part of taking care of me was to know that someone, one of us was with Dad, otherwise I would have worried and stressed myself out. No one likes to be around me when I'm stressed out. 
It is a strange site to see someone you know in the hospital, it was the most surreal to see Dad. There he was, someone who loved to talk rendered speechless, someone who could not sit still for five minutes rendered immobile.

We were there so many days it started to become a routine. We would all meet up usually within a half an hour of one another, mom would sit in the room with Dad, PJ and I would go into the waiting room. Between the two of us, PJ and I must have looked up and read any and everything surrounding strokes, whether it was about the patient them self or about the caregivers. Dad slept most of this time. He always did like his naps and now he took full advantage of it. Around noon we would grab Mom and head down to the cafeteria to have lunch. The first day we went for lunch we sat at a table and that table ended up being available every day we went down there. We laughed every day we would turn the corner to see that table available. Creatures of habit we all are, so it became our table, just as the waiting room became our waiting room.

2nd floor waiting room taken by PJ

Another view taken by PJ

They had Dad in a room and on three separate occasions he tried to “escape”, pulling himself out of bed and standing on his good leg. So they had to move him to a nurses room that had someone in it at all times. As Dad became less dis-oriented at the unfamiliar surroundings he was in, he settled into the spot they had him in and wasn't so much of a flight risk. They ended up putting a feeding tube down his nose, because his gag reflex was not working. He ripped it out in the middle of the night. It was uncomfortable. One thing about Dad, he has no tolerance for pain. He never has. As a result of him not wanting the feeding tube down his nose, they ended up performing a PEG procedure that allowed for a tube to be inserted into his stomach and what I called the “feed bag” attached. Then they were at least able to pump his body full of enough calories to sustain him and give him the energy he needed for his recovery.

It was recommended when Dad was well enough to begin rehab, that he be moved to an acute rehab facility and we decided on the acute rehab located within Eastern Maine Medical Center. It is the only one in the state of Maine to be located in an actual hospital, something I liked if the need arose where something went wrong and Dad had to have any imaging done or needed to see a Doctor right away, it would only be a matter of moving him from floor to floor. On the sixth day of Dad being in Portland, on the sixth day of me travelling down there to be with him, we received word that he would be transported to Bangor the next day. I remembering commenting that it never took much to make me happy and I was so happy at hearing this news. When I left the hospital that day I promised to see Dad up in Bangor the following day, thanked the nurses who took care of him saying, no offense to them but I wasn't going to be coming back the next day and left Maine Medical for the last time. I smiled the whole drive home. Now Dad could begin what we all knew would be a long recovery, but an optimistic, hopeful recovery. The following morning, on the seventh day, Dad left Portland and was moved back up to Bangor. It was the first time in a week we all let the air we had been holding in go, if just a little.   

That first day

These are the series of events as I remember them after calling 911, to the best of my abilities.

From the second I realized what was happening, time suddenly slowed down and sped up all at the same time. The ambulance arrived within minutes and the EMT confirmed what I had begun thinking. Dad was having a stroke. Quickly he was whisked away to Eastern Maine Medical Center in Bangor Maine with my mom and I following suit. The drive to Bangor is only about 35 minutes from Bucksport, where my parents live. I tend to estimate time it takes not miles travelled (and I will do this to give everyone a sense of how big the state of Maine is within the proximity of where we needed to travel to and from). I remember being calm on the drive, into what I call “the big city”. I sent a text to my brother PJ who lives and operates a bed and breakfast, The LimeRock Inn, in Rockland Maine with his partner Frank, to call me as soon as possible. He was still sleeping though and so I thought I’d give him until 7 am before calling, if I had not heard from him by then. I was so calm still.
By the time I parked the car and went into the hospital to find my mom (whom I had dropped off at the main entrance), my brother had woken up and called me. Delivering bad news has never been my strong suit, but to be honest who’s strong suit is it? PJ and I had a childhood friend who committed suicide when he was 19 and as I was on the phone with my brother this early winters morning I remembered having to tell him the news of our friend David so many years earlier. I paused for a moment and simply said, “Dad had a stroke and we are at the hospital.” He replied with an almost childlike shock as anyone would when presented with unsettling news, “What?” I truly think in times like this everyone needs the initial statement repeated so our mind can begin to process what has been said to us, so that afterwards we are not questioning did I hear that right or did I misinterpret what was said? I repeated and explained Dad was in the emergency room and as soon as I found out more I would call him. Rockland is an hour and a half from Bangor.
By the time I found Mom in the emergency room Dad was done in triage and was being brought into the room where we were. At that point he still could not speak, only mumbling with the occasional yes/no, could not move his right hand but his right leg he could elevate about 2 inches for 5 seconds. The CatScan revealed a probable blood clot on the left front side of his brain. The Doctor came in and said he suffered a massive ischaemic stroke and since Dad was in the beginning stages of the stroke there was a good chance they could break up the clot in his brain with, as he called them, “Powerful blood clot busting meds.” It's called tPA (tissue plasminogen activator) and there are several different versions of this available. They are part of a group of thrombolytic drugs and there is usually only a 3-4 hour window in the beginning of the stroke where this medication should be administered for it to be effective. We were told Dad was a good candidate and so the drug was administered quickly.
Here's where things get complicated. There is a Doctor at Maine Medical in Portland Maine who does a procedure whereby he can go in with a catheter and remove a blood clot. The Doctors in Bangor had been in contact with the Doctors in Portland and Portland decided to take on Dad's case. The ER Doctor said it worth taking a shot at this and that Dad was a vibrant man. We agreed. So the decision was made to life flight Dad to Portland. A little known fact about Dad is he hates flying. It is probably one of the few things he just absolutely hates. And here he was now being readied to fly in a helicopter to Portland.
Mom and I watched as they got him ready to fly. As of today's date, Dad does not remember the ride he was about to take. As soon as they wheeled him up to the top floor where the helicopter pad was, Mom and I were back in the car. We had to stop back at the house to pick up a few things, first, so we backtracked to Bucksport and then headed to Portland which is two and a half hours from my parents’ house. I had been on the phone with PJ and he agreed to meet us there, he's an hour and a half from Portland. Everywhere you want to go in Maine seemingly takes an hour to two hours to get to if you don’t live right around either, Portland, Augusta, Bangor or Lewiston/Auburn.
I was very calm and very quiet on the drive down, of that I remember. It was cold out, with the clearest of blue skies. PJ had voiced some concerns regarding the stroke, what was going to happen, what could happen, what the after effects would be. I re-assured him to just wait and see, because we knew very little and rather than freak out about unknowns we needn't think of yet, we needed to remain calm. At this point, on the surface, I still had it in my head that Dad was going to Portland, they were going to remove a blot clot and he would just have a long, slow recovery. I wouldn't let myself go to any other darker place. Secretly though, I was doing the same thing my brother was doing and falling apart with a million and one situations and scenarios running rampant through my head. You would never know it from talking to me though. I was on an auto pilot I had learned after an experience with someone who I was involved with that lived in another state. A couple of years prior, I had driven back and forth out of state on three separate occasions, all with disastrous results and each  drive back to Maine had fortified how I was able to function on this, the day Dad had the stroke.
Mom and I arrived at the hospital shortly before PJ. You don't realize how big hospitals are until you have to park and then weave your way through a maze of corridors and floors just to get where you need to go. We were told Dad was in the emergency room, so we went there. The emergency room told us he was up in cardiac intensive care, so we went there and after what seemed like an eternity found him. He woke up when he saw us and waved his fingers on his left hand. They had him hooked up to what seemed like every tube and machine out there. While waiting for PJ we spoke with the Pulmonary Doctor who was, as he described himself, just the backup assistant. He explained that since the stroke was caused by a carotid dissected artery on the left side of his brain they couldn’t go in and do the procedure he was sent there for. Both my brother and I have a close friend who suffered this same kind of stroke (I say “same kind”, even though every situation and person is different) and several years later he is doing amazing. We were told there was also nothing that could be done to repair this artery. The CT scan revealed a large section on the front left side of his brain that was dead. Gone. Not coming back. There was some swelling on his brain and we were told he needed to stay in intensive care until the swelling had stopped and they were sure there would be no bleeding. Once the meds given in Bangor had worked their way out of his system, and there was no swelling or bleeding, they could put him on blood thinners. I’m sure I could be more technical or descriptive in what I’m writing. I’m sure there are details I’m leaving out. But this is how I remember it all.    
The Pulmonologist gave us the impression that there wasn't much more to do with Dad and that he would most likely never be able to live on his own and it was probable he wouldn't recover much more than the way he was now. I remember Mom wept and I had to calm her down. I didn't want any of us to cry in front of Dad, no matter the news or situation. Then we talked to the Neurologist. I swear it seems like Doctors play good cop, bad cop, because as nihilistic as the Pulmonologist was (and he even commented that he didn't want to be a downer but...), was also how much more optimistic the Neurologist was. He had viewed Dad’s chart and condition and felt he would be able to regain some of the motor functions that were no longer there and make somewhat of a substantial recovery. It made me recall a scene from the TV show Lost where Jack, a Doctor, delivers some frank news to a patient and his father chastises him for not being a little more empathetic to the patient.

"You might want to try handing out some hope once in awhile. Even if there's a 99% possibility that they're utterly hopelessly screwed, folks are much more inclined to hear that one percent chance that things are going to be okay."

"That's false hope dad."

"Maybe, but it's still hope."

Personally, I would much rather err on the side of hope every time. PJ made it to the hospital and finally there we were, our little family, standing around Dad, the man who did everything for us, who was everything to us all, now held captive by this crippling stroke.
We stayed at the hospital until it got dark out, helpless to do much more than what we were already doing. Both PJ and I had dogs that needed to be taken care of, Mom needed to eat as she is diabetic. It was agreed that Mom would come home with me that night, and then PJ would take her to his place for the weekend as Rockland was a little closer to Portland and Mom didn't do too well on long car rides. We said goodbye to Dad, assuring him we would be back the following morning and left to begin the long drive back up north. 
When Mom and I eventually got home, it was dark, as dark as it had been when I woke up that morning. I brought Dad's clothes, from the emergency room that morning, in from the car. It already seemed like an eternity ago that everything had happened. As I walked through the dining room where I discovered him on the floor, helplessly trying to pull himself up I paused. Everything was as it had been when we left so many hours earlier, the table, which I had moved to allow access for the stretcher was still out of place, his shoes were still piled in the corner against his closet door. I moved the dining room table back to its correct spot and put his shoes away. So much had happened and not happened. There were still so many questions to ask, so much to process, so much of everything swirling around in my mind. Life can change in the blink of an eye. It did for Dad and all of us on that first day.    

The Incident

For various reasons that no longer matter, that are now long in the past, but that still hold some relevancy to the story I’m about to tell, I have been staying with my parents for the last two and a half years.

To preface what I call “the incident” you need to know my Dad has woken up with me every work week morning I have been living in their house. I have told him on numerous occasions that he didn't have to. “Sleep in,” I would say to him. However, to know Dad is to know he would not ever heed my advice. More often than not he was up before me, quietly opening my bedroom door to take my dogs, Kane and Loki, out and feed them while I jumped in the shower to get ready for work. Spoiled, some would say. I didn’t view it that way and neither did he. Besides, it was in his nature to be up early, to constantly be doing something, to help out whenever he could, however he could. I suppose if ever there was a restless man I knew, it was Dad. Mom always stayed up later than Dad at night and as a result she was always sleeping during these mornings Dad and I had together. Over the last couple of years I came to so thoroughly enjoy these quiet respites with him. He would get up, help with the dogs, grab a cup of coffee and turn on the TV, usually flipping between either the local news, FOX News or the Weather Channel. Everything about the weather interested him. He became my weatherman and I came to rely on him to tell me what the forecast was going to be that day, the highs and lows, the humidity and wind, the rain, snow, sleet or sunshine to be expected. We would talk about the upcoming day and what was on the agenda for them, what we were having for dinner that night, minuscule minutia of ordinary proportions. It was a time I treasure.
The morning of the incident, January 2, 2013 I remember waking up thinking how much I did not want to get out of bed. It was wicked cold outside and I was snug as a bug in a rug to coin an archaic phrase. Strangely enough though, the last week or so I had been getting up before Dad and so despite me wanting to stay in bed, the dogs and I jumped up and started our morning routine. Kane, my oldest dog was aging and suffered from incontinence now and again. As a result the morning ritual with them had reversed, they went outside first and then were fed. It was in the single digits that Wednesday. The kind of snot freezing cold that Maine winters are known for, minus the usual winter wind on this particular morning. The dogs quickly finished up their business and back inside we went. Even they didn’t like it this cold. As I was feeding them I could hear Dad shuffling around in the dining room. Their house had a couple of quirky little things to it, one being the dining room used to be a bedroom so as a result that’s where Dad’s closet was. While in the kitchen, all of a sudden I heard a crash. I said, “What fell?” There was no answer. I quickly went into the dining room and saw Dad lying on the floor between the bay window and the table, a tight spot to have fallen in between. It was a surreal scene. He was trying to pull himself up by the corner of the table with his left hand and he was mumbling. At first I thought he had just hit his head and like when you get the wind knocked out of you and can’t speak right away, he was just disoriented. Then I noticed his right hand was not moving, nor his right leg. I asked him just nod your head can you speak? He shook his head, he could not. In the moment that this had happened my mom woke up, startled by the fall. By the time she walked into the room, I had already changed my opinion about what happened, what was happening and knew he was having a stroke. I called 911. It was 5:40 am.