Friday, June 29, 2012

The visit

Before I talk about the first time I knew something was wrong I want to tell you about something that happened.  As those who know me know, I am an open book.  This means I will tell almost anything to almost anyone as long as it doesn't interfere with someone else's privacy.  What people often don't know about me is that means what you don't know about me or something that has happened in my life, you will never know. I know better than most how to keep something close to the chest so to speak.  You might even say I give the illusion of knowing so much about me that nobody thinks there might be so much more that I am not saying. 

So, this next part is not something I tell lightly only because I don't want to hear it from people who don't believe what I am about to say.  I trust my readers of this blog, though and I know you will understand or at least move past it with a willingness to forgive my indulgence and belief in what happened one day when I went to visit my mom before there were outward signs that things were not progressing as they should.

I brought her cup of soup and we did our usual talking and laughing and planning.  And all of a sudden around her I knew (I didn't see or hear anything, only felt) that her friend Peggy was in the room with us.  Now Peggy had been one of mom's best friends and had died from cancer years before my mom.  I had never seen my mom's heart ache like it did when Peggy died.  I cannot even explain how I knew Peggy was there...I felt her is all I can say.  I knew right then and there that she was there because mom was going to die.  But, I kept this to myself and within a few days had tossed it off as me being exhausted.  I think I did that because I wasn't ready to accept my mom's death.  I also wish I had asked my mom about it. Did she know Peggy was there?  But, I remember I specifically didn't because I didn't want her to worry about her death.  There were so many times in those three months that I didn't bring up dying because I didn't want her to worry about dying.  That probably was a mistake.  Mom knew before all of us and even the doctors that she was dying.  I wonder if she knew on that day.  I wonder if she felt, saw or spoke with Peggy on that day or any other after that. 

It would be a few days after that that mom stopped being able to keep food down.  Michael came for a visit and she told us she had a dream about our dad.  He was in a kitchen and she said, "John, did you come to see me?" and he said, "Pat, I am not here for you. I came to be with the kids.  They need me."  Looking back I know that this was mom opening up the conversation that she was going to die.  But, you see, this was not yet matching with what the doctors were telling us or even what we were seeing. She and I were still talking, laughing and planning.  I was bringing her soup and cheese and crackers everyday.  Sure, she had stopped eating and they were getting worried the leg couldn't heal if she didn't eat but that certainly didn't equal death in my book. 

Our hearts and minds accept what needs to be accepted when we are ready.  I was not ready.  Mom appeared ready but in the next three months she would battle with God a bit about not being ready to leave her family.  It was heartwrencing and yet amazing to watch.  This story is about mom dying, me growing up, and also, about that fact that since mom's death you would never be able to convince me that God does not exist. 

Thursday, June 28, 2012


It gets more difficult to decide what to write about here.  The reason is because events go in no particular order in my head.  I am afraid of writing something that is not truthful, but know that if that happens it is only in the order of the details.  From rehab she went to the hospital so many times and I forget the what and why of each of those times.  I have to remind myself that is not what is important here, but for the sake of the reader I want to be honest that some of these events will definitely be told out of order and sometimes I will have her go back to the hospital for something and that might not have been the time she went to the hospital for that particular thing. 

So, how do you decide on a rehab you say?  Well, they court you in the hospital and you pretty much go with the one who has the reputation and agrees to take the person who is rehabbing.  So we went with one and the EMTs came to pick her up.  I met her over there and I can honestly say that I was not impressed.  The building itself from the outside looked haunted and from the inside appeared to be falling apart.  Mom's doctor was a woman who I believe was russian and appeared to be 70 years old.  I know how bad that sounds but I also know what we went through and I wanted a tough, healthy doctor who could make everything appear better.  Well, mom's doctor came to be a light in the storm and grew a wonderful relationship with her patient. 

We got her settled in and let me say, she was feeling much better.  The only thing that had to remain a constant were the pain pills. Especially needing to have her leg cleaned and rewrapped every single day the pain was more intense than anything I have ever witnessed.  From knee to ankle it was all exposed nerve.  It was important that she have a pain pill 30 minutes prior to the work they would do on her leg.  This would come to be the biggest beef I had with the rehab hospital.  Apparently, they could not quite get the timing of those damn pain pills down and often the work began before any pain pill had been administered and often she was calling for over a half hour for her pain pill.   I actually got so mad that I called the counselor who worked with us in the rehab and said, "If they cannot keep the pills on the schedule I am happy to show up everyday at the time the pills are needed and remind them and if I am working I can call them,"  Interestingly it got a little better after that. 

Physical therapy started right away and mom began to walk with a walker and could take herself down the hall to the bathroom as long as someone was there if she fell.  I began work again and would work until 3:30 and then head right to rehab.  Krista would go stay with our friends until I got home.  Usually they would feed her and I would grab Mcdonalds for myself on the way home.  I stayed as late as I could and often it was such a struggle mentally for me to leave.  I brought magazines and books on CDs and tried to make mom laugh as much as possible.  She needed to eat lots of protein for the leg to heal so I would stop at Elsa's everyday and bring her soup and coffee and myself a coffee.  We made lists of things we would need for her to come home.  A temporary ramp and some different things in her apartment to help her get around until she was fully healed. 

Michael came to visit and brought her outside in her wheel chair and then I realized I could do that too.  The next day I brought her out to a place I could sit too.  It was the PERFECT fall day and we laughed and made plans for the future.  It appeared this had just been a small blip in our path and we were on the way back to our plans for the future. 

It was scary because that leg was going to take a long time to heal.  It was hard on mom because physical therapy was not easy and there were times she wanted to give up.  I can remember one time she got extra mad and said,  "you should have just let me die."  I was so upset but since then I have read so much about people needing to teach themselves to walk again and such, and I realize I was not really sympathetic to her journey at that time.  She was in pain almost constantly and physical therapy doesn't stop because you have pain. 

It sounds better here I know and it was, but it became hard to juggle wanting to see mom and just be with her, plus bring her anything she asked for, the food from the restaurant and do her laundry and get that to her in what she felt was a reasonable time, plus be a good and attentive mom and a good and attentive teacher.  Mentally I was starting to lose it going back and forth each day.  What I really wanted was to stop working for awhile so I could see mom while Krista was at school and then be there for Krista.  I began to contemplate a short leave of absence.  Mom was getting better but she preferred having me there when they cleaned and wrapped her leg.  She needed someone to be on top of them about the pills.  She also needed company and that is what family is all about.  I had some heavy decisions to make.  Little did I know that God had other plans and soon all decisions would be lifted from me only to be replaced with bigger concerns and much bigger decisions. 

Wednesday, June 27, 2012


The doctor came out himself to tell us mom had survived the surgery and was expected to make a full recovery.  Isn't that odd?  You go from waiting to hear she has died to making a full recovery in just a few hours and you wonder, "Did I go all crazy drama all of a sudden or was the drama real?"  They had debrided her leg from knee to ankle to remove the infection.  She had a wound that would need lots of care in the next few months, but the infection was gone.  She should be able to breathe on her own the next day when they took the breathing tube out.  She would continue in this doctor's care until the wound was healed and there was a possibility of skin grafting down the road but the wound had to do some serious healing first.

That was the beginning of what I would come to call the push to get us out of the hospital. The breathing tube was taken out and we sat with our breath held waiting to see her breathe on her own.  It took so long that I was scared they would have to put it back in.  But she did start breathing on her own.  She started to be driven crazy by us hanging around her so we would go read magazines and laugh and chat in the atrium of the hospital.

She was scheduled to come out of ICU and she was drugged to the maximum so we decided to wait to go home until she had made the move.  The problem was that it takes a long time for beds to open up in hospitals and although they wanted the room in ICU, they didn't have the room on the vascular floor.  So, low and behold, she told us to go home and we did. Later that night, possibly 8ish I realized I had the one thing mom really wanted, her glasses.  My then boyfriend, now husband drove me over and I ran into the hospital to give them to her.  They had moved her to the vascular floor within a half hour of my arriving.  I walked into her darkened room and she said, "Oh Jen, I am so glad you are here.  They said I was going in for surgery and then they brought me into this dark room and nobody is around. I am not sure what I am supposed to do."  She was scared and so alone and I kept thinking if I had not come in right then, who would have calmed her?  So, I got her settled and told her it was alright.  Surgery was over.  She was in this room to sleep now.  I then went straight to the desk where they assured me that it was because of the many drugs in her system and there would be some confusion for a few days until the drugs cleared out. 

When I got into our car I started what I call gasp crying. It is the kind of cry you often hold in because it has the power to consume you.  It was so hard to see my mom so alone in that room and so confused.  Eric asked me if I thought I should stay and although I wanted to more than anything, I knew that the nurses were right.  She was drugged and confused and she would sleep soon.  I went home that night, but it would be the last time I made that decision when she was in the hospital. 

And though we were promised a full recovery, for the next three plus months my family and I would come to know that hospital intimately.  It would become the place where we comforted each other as we cried, where we chased down doctors to get answers to our questions, where we complained about the fact that they kept sending her out too soon, and eventually where we said goodbye to our mom. 

For now I am leaving us on the road to recovery.  The next stop was a rehab hospital, but it is not time to go there just yet.  At each place on this journey it is important to stop and sift through the memories.  It is important as I go through this to hold onto to each one just a little longer after I have written it as if it is a bubble out of the bottle that has not yet burst.  I can watch the memory unfold in the bubble and then watch it drift out of my hands and slowly away from me to sit on the branch of a tree every so precariously before it pops and is gone for good.  The memories will never be gone for good, but I am hoping some of the pain associated with them can leave on that bubble.  I don't want to take the pain with me.

Tuesday, June 26, 2012

one in three

The more I write about what happened, the more it sticks with me and haunts me when I try to sleep at night.  And yet, I think if it just all gets out on paper, I may be able to sleep better over all.  I don't think my story is any different than many people out there but its mine and I am choosing to write it.  I don't think my mom is any better than moms of people out there yet she is mine and I am choosing to share her.
The next part becomes a blurr.  Mom was intubated and the machine did her breathing for her.  The ICU is a scary and dramatic place, but the waiting room is like a thousand times better than anywhere else in the hospital.  I really cannot remember what we did or if we even spoke to each other.  I mean I am sure we must have but there is no memory of it at all.  At some point a doctor came out.  How I wish I could pretend to you that I remembered his name, but I didn't.  Nobody's name really mattered to me.  He wanted to have a conference with us.  The PA came out and said,  "That call you needed to make, now would be a good time to call your sister."  Those words held so much meaning and the weight of them dragged me down.  I don't remember if I called Kristin or if Michael did but the next part seems funny in its awfulness.  We decided to do a conference call which basically boiled down to us in a room with the doctor and a phone turned toward him so Kristin could hear what he was saying.  He told us that mom had been misdiagnosed with the pulmonary embolism. That as they watched her leg it had begun turning black.  She was infected with necrotizing faciitis.  For the layperson that would be called the flesh eating bacteria.  Mom needed to have emergency surgery to remove the infection or she would die.  She could die in surgery though.  I remember intaking my breath so much that it made a loud noise.  The doctor left us alone to discuss it.  I cried to Michael that I couldn't lose my best friend.  We picked up the phone.  (at this point I think it was me) and I asked Kristin what she thought.  Her reply,  "I couldn't hear a thing."  This was one of those funny/not so funny things you remember that happen and in your head you say, "Now I have to repeat out loud that she may die."  Oh, I forgot to mention that he came up with a statistic for us.  1 in 3 survive the surgery when it has gone as far as it had with my mom. 
Because it was a conference with us I am sure we must have had to make a decision about the surgery.  Yet, what kind of decision is there really to make?  Definitely die without surgery.  1 in 3 chance of survival with surgery. 
Yet, mom was conscious so he had to ask her too.  He really didn't.  He more told her that is what he needed to do and she said, "do it."  Rather it was probably a nod of her head.  But then he said, "during surgery we may find the infection has progressed and we may need to take your leg.  Do I have permission to amputate your leg?"  That led mom to stop and think and I all I could do was hold my breath.  She was not going to give him permission to amputate.  He asked her if she was playing with her grandchildren before coming to the hospital?  Then he said, "would you rather play with them again with one leg or not see them again?"  Okay, yes he was harsh in this but we all needed her to see it was life without her leg or no life.  I remember exactly how she said it and I wish I could do it for you.  She was like a little kid hearing she wasn't getting what she wanted.  "Fine."  We kissed her goodbye and they moved fast.  She was prepped and off she went.  The doctors prepared us to settle in for the night.
At this point, I think Kristin was making arrangements to fly as soon as possible.  I am sure Michael and I talked, but I just can't remember a thing except crying because I might never see my mom again. There was so much  I wanted to tell her.  There was so much laughter we still had to share.  There was so much I needed her for.  I just was not ready for this.    I think I remember coffee.  I know I remember other people being brought into that waiting room and hearing news that made them suffer and cry.  In that waiting room you were one group of suffering, but also very much alone in your group.  You wanted to tell other people it would be okay and you were all in this together, but suffering is so damn personal.  Nobody can really be in with you except the people suffering over the same damn person you are.  Michael and Kristin were my life raft in this drama and even then, nothing made it better. 
This is probably a good time to bring up God.  Of course I talked to Him through this entire thing, but truthfully, what God gave me during this time was my brother and sister.  Because I could pray with the best of them but I needed human hugs and hearts to make me feel any kind of "this will get better."  Michael and I settled in for the wait.

Monday, June 25, 2012

Where are the doctors?

In preparing for this next post I have done a lot of thinking.  No matter how hard I dig into these memories I just can't always remember the order of things.  For example, I know we called Kristin and filled her in.  She wanted to come but it wasn't quite time yet.  We didn't want her to fly all the way out without more information.  I don't remember when we called Kristin.  I just know that we all decided that we would talk to the doctors and call her again with their advice. 

Mom did not sleep well.  She moaned and spoke gibberish and woke up still in fierce pain which she described as worse.  Mary assured us that all would be better.  The doctors came through at some point and although wanting to feel reassured, the doctors didn't really have much to say to us.  Also, take note, this was a teaching hospital.  Almost never was there one doctor coming through which made it harder (or feel harder) to stop them and really asked questions....and what more could we ask aside from, "Is she going to be okay?"  And what more could they tell us with her pulmonary embolism.  Thank God, somewhere down the road there was going to be a doctor who said, "This pain in her leg that isn't going away, something isn't ringing up right."

At some point, I received a phone call from the doctor's office.  Remember my mom had been at the doctor the day before.  They said one of her blood tests came back positive and she needed to get to the hospital right away.  I informed them that she was there.  They asked what was going on. They told me to tell doctors the results of the test.  They told me to "keep them updated."  When I informed my brother of this, he became enraged that they would ask us to keep them informed.  I remember him calling to complain.  Who cares what they said or how it came out in the end?  The fact is we had someone to be angry with and that helped a lot.  It got better when they called to say mom had missed her appointment that afternoon and I informed them for the second time that she was in the hospital.  I was disgusted with the lack of communication in their office and I was done with them. 

At approximately 1:00 that afternoon, mom started to get really crazy with her gibberish.  She was telling me as she shook with fever that now she knew how her dad died and this was her time to go and on and on.  I was freaked out and Mary called the doctors with this new information.  They informed her they were coming.  They didn't.  Mary called the doctors again at 2:00.  They said they were coming.  They didn't.  My brother and I were both scared and angry.  Where the hell were our saviors?  At 3:00 Mary checked mom's blood pressure and called an emergency.  I don't know how a nurse does this and I assume they can get in lots of trouble if doctors arrive and there is no emergency, but the doctors got their asses there within seconds.  In fact, it was frightening how quickly they were there after Mary checked mom's blood pressure.  The room became a frenzy of doctors in motion ( a whole team)  checking blood pressure, seemingly yelling, "Mrs. Lotane can you hear us?  How are you feeling?"  While in one fluid motion 2 doctors grabbed her bed and started wheeling her to do the door.  I will never forget the physician's assisant (who later helped us come to terms with letting mom go) talking to us as he wheeled her by the head of the bed and the team moved all around him.  The next 6 hours would be critical he said.  They were taking her to ICU where they would intubate her.  We were not sure what was happening still, but her blood pressure had taken a massive drop.  My brother told the PA that my sister was waiting for a call telling her if she should come.  The PA said, "hold off on that call just now.  Let's see where the next six hours bring us." 

Mary was getting ready to go home.  She stopped by the waiting room.  I broke down in her arms yet again and she said, "Its going to be okay now.  ICU is the best place in the hospital because she will have just one nurse who is solely watching over her.  She is in the best place."   Every time I think of Mary I am reminded how we make our jobs what they are. Mary had several choices about how to treat the family of her patients and she had made the choice to make a difference.  I wish I could thank her everyday for her caring.  Because really when your dad has died and your mom needs taking care of...who takes care of you?  Michael, Kristin and I would come to lean on each other more than we ever had.  I would continue growing up.  The journey had only just begun.

Friday, June 22, 2012

The First Day

So, here I am back to the blog.  Before the summer ends it is really important that I work on finishing the story of how I grew up as my mother died.  It is important because people have asked me to do it.  And so here and there there will be other blog posts, but it is time for me to face these memories even when they are not the kind I want to sit with too long.  When last we left this memory, I had called the ambulance and mom had asked me to lie down with her and my one regret was that I didn't stay in the moment more fully.  I repeat that completely because it is easy to forget and I can think of three times in the past week that I was with someone I love but I wasn't WITH someone I love. 
The ambulance came and it was all I could do not to break down then and there.  I was so alone.  I daresay flashing lights make everything more dramatic and mom had her own battle with pain going on and I was scared to death.  I chose riding in the ambulance over bringing my car.  Already life had started to change. My decisions were only living in the now and I couldn't think further ahead than the next minute.  Thankfully, when we got to the hospital she was brought in right away.  Sadly, this led me to believe she would be seen right away which was not the case and her pain soon gave way to a type of moaning that made me frantic to get a doctor.  The problem in the ER is everyone is frantic to get a doctor.  
There are a few things here I would like to stop and mention.  I could not go to the bathroom, nor get something to eat/drink because if I left her there was the chance the doctor would come and I was needed because she was in so much pain she was starting to talk gibberish.  Not one single nurse/doctor/aide offered support for me in that ER.  I was scared, lonely, scared and scared and it would have been nice to have someone say, "Go to the bathroom and take care of you, if a doctor comes we will get you."  It doesn't happen like that in the ER (not where we were anyway) and so I daresay to you that when friends ask what they can do for you, don't be afraid to ask a friend to come give you a bit of a break so that if a doctor comes you don't have to be worried you have missed them for the day!  But, I digress.  At this point is was 3 in the morning and I had not told anyone what was happening except two friends who had already taken on big tasks.  One who had my daughter and was making sure she was okay and got to school and the other who was taking over making my subsitute plans for the day (and eventually 23 days)  so that I didn't have to worry about that on top of my mom.  So before you feel too sorry for me remember that and I will too. In a time of immediate need late at night, one friend took my child and one friend took my job with no questions asked.  The two biggest concerns I would have were off my plate faster than I could say, "please help me." 
Okay, I hate to bring up the anger but here it comes bubbling to the service.  In that stupid ER every single person asked the same damn questions.  Now, I don't need doctor/nurse friends to go off on me. I am sure on some technical level it helps save lives to ask the same questions over and over again.  Really, not even any sarcasm, I am sure there is a reason.  But- when you want action you are ready to take action by ripping a person's throat out when you hear, "and do you smoke?" for the 15th time by a 7th doctor who seems as stunned as you are by the moaning pain.  And I don't remember which doctor finally authorized pain medication but when the nurse came to give it she told my mom what it was and mom immediately said,  "That doesn't work on me."  Now I get it.  The doctor prescribed something and the nurse gives it, but Jesus can we at least pretend to listen to the patient?  So, nurse tells my mom (I can still remember the patronizing tone) that this will, in fact, kick in quickly and she will feel no pain soon.  Guess what?  It didn't and she didn't and then we had to wait a reasonable amount of time before they could give her something else. 
Finally, at about 4 am the heroes arrived.  Oh they were arrogantly wonderful in their assuredness that mom had a pulmonary embolism. They were checking her into the vascular floor and she would be in their care.  I remember thinking, "Doctor, sir, you are younger than me, but if you feel confident you can make my mother well, then by all means do your thing."  I was so frigging exhausted and I just wanted someone to take over.  I have not painted the appropriate picture of how long we sat with her moaning and me not knowing what the hell to do and needing coffee/water and really to go the bathroom.  I needed a savior.  This vascular team seemed to be it and I was not going to ask any questions.  Once they moved, they seemed to move quickly.  They got her to a room changed her medication and then someone new came into my life.  Mary.  Mary the nurse who once mom was settled took one look at me and gave me a dunkin donuts gift card and a pager.  "Go, take care of you.  Mom is going to be just fine now."  I broke down crying and do you know what super nurse did?  She hugged me tight and held on until I let go first.  I prepared myself to make some calls and I left Mary to hold down the fort with mom.  How could I know that the nurse who just saved me was, in just six hours, going to also save my mother? I couldn't, I didn't.  What I did know was that Mary understood familes and understood what I needed right then.  She had taken on two patients and I will never forget her for that.  I walked slowly to the bathroom and to dunkin donuts trying to prolong the call I knew I had to make.  I had considered calling my brother and sister as things were going down but it seemed kind of rude to scare them when they were so far way and there was nothing they could do. I wanted to wait for more information. So now it was 5:30 am and I knew I could call my brother.  I decided to wait on my sister because of the time difference. I didn't want to wake her up, scare her and still have no information other than mom was admitted and they think pulmonary embolism.  I remember hearing my nephew on the line and trying to act normal.  A near impossible task when you haven't slept and are worried sick.  I don't remember much about that phone call with Michael except when he said I will be there between 7 and 7:30.  My big brother was on his way and a burden shared is a burden lifted somewhat.  I made my way to the gift store for a magazine and back to my mom's room where she slept soundly and I napped until Michael arrived.