Thursday, July 19, 2012

The lesson

I will be taking a short hiatus from this blog for awhile.  And by short I mean I have no idea when I will feel like writing again.  My heart is breaking into a million pieces and that doesn't make for a very good uplifting blog. 

If you take NOTHING else away from these posts I have been writing take this.  Memories count.  Make them every SINGLE DAY.  Don't waste a day.  DON'T WASTE A DAY. 

Wednesday, July 18, 2012

We are not alone

As I have mentioned before I only feel comfortable writing about my journey throughout my mother's death.  Everybody experiences situations in their own way and I cannot tell you how my brother or my sister experienced their journey.  I can, however, tell you how the process of their own journey affected mine. Today, lets focus on my sister, Kristin.

Throughout life your big sister (or at least mine anyway) can be your protector, your therapist, your go between when you are a teenager and having a fight with your mom, your ally and your best friend.  Yes, that is true even when you want to wring each other's necks because you are sisters.  You share something that nobody else can share with you.  I am not really sure how to best describe that sister thing but it is amazing because even in being very different people, you share something special in your heart. 

So, my sister lives in Chicago.  For her this made my mother's process much harder because every time Kristin came out to Massachusetts she was leaving her support system.  She was leaving her kids, husband, job and friends to be with mom.  She came to be with mom, but I believe she also came as a support to me.  Even if she didn't to that intentionally that is what she was.  Every time I think of those days, I picture Kristin in one chair and myself in the other and lots and lots of laughter.  Isn't that amazing?  There we are with our mother dying and sisters can laugh together.  Oh yes, mom was laughing too!!!  I also remember when my sister got there mom's hospital room started to look more like it should.  Kristin brought beaded necklaces that her girls had made and they were hanging off IV poles and such!!! 

The other thing that Kristin brought to the table was her anger.  For those who know Kristin she never backs down from her anger and although at times (like when that anger was directed at me) that is scary, in the hospital that is exactly what we needed.  Kristin got things done and wasn't afraid to tell people she was pissed and she was taking action.  That gave me strength to be more pissed at some of the injustices we faced.  Anger in the face of death is absolutely natural and Kristin has taught me it is okay not to back down from your anger and it okay to let people know you feel that way. 

My sister made things easier for me.  In the end, I think that is what siblings are for.  We make things easier for each other.  We hold together in the face of the storm and we don't let go of each other.  When the storm blows past and you look around you, the people closest- that's your family.  Love them with all your heart and remind them you love them every chance you get.

Thursday, July 12, 2012


I am leaving for the ocean (one of mine and mom's fav places)  today and will be back to the blog on Wednesday morning.  Be Well.

Winning Team

My cell rang as I was walking onto mom's hospital floor. I was so tired of seeing "St Vincents" come up on my display.  The nurse informed me that my mom was refusing any more tests.  That if she refuses, they cannot do more to help her.  That I need to come talk to my mom.  "I am almost there," I told her and turned the corner to her desk with a big wave.  She told me the  attendant had come to get mom for a catscan and she had sent him away.  I walked into mom's room loaded for bear. 
"So that's it?  You're giving up?" 
"What are you talking about? I am not giving up." 
She informed me then that they just keep coming to get to her for more tests and she told them she was not taking another test until the doctor came to talk to her about all these tests.  Wow, did I have pride at that moment.  These people didn't want me to talk to my mom because her health was at stake.  They wanted me to calm her down so they could do their job without her being a pain in their butts.  And yet, what she was asking was so reasonable and she had the stuff.  The stuff that says, "I am a fighter and dammit you won't just do whatever you want." 
I walked back to my friend at the nurse's station and told her I spoke with my mom.  "Oh good, I will reschedule the catscan."  "Um, not exactly," I said with pride in my voice.  "We need to talk with a doctor before mom has any more tests.  She wants to know what is going on."  "But we have to go on doctor's orders."  I told the nurse we understood that she has to go on doctor's orders but she would need to tell the doctor that the patient was refusing until a doctor spoke to us that day.  It was the shortest time frame it ever took for the doctor to get to us.  Unfortunately, she was in a quandary because she was giving a bunch of tests not really knowing what was wrong.  Also for the insurance to keep paying for the hospital stay the doctor has to keep ordering tests.  Welcome to frigging America!
The best was seeing mom's smug little smile at the end of the visit when she said, "I will take the catscan now. Thank you for coming to tell me what was going on with my health."  ZING! 
The spunk she showed that day was one of the best times I had in the hospital with her.  The  nurses wanted me to talk some sense into her.  Instead she and I teamed up and staged our demonstration.  It was nice to have a win as a team.  I miss that.

Wednesday, July 11, 2012

What is Hell?

While someone you love is in the hospital life goes on at it's regular pace, but you feel just enough on the edge to know you are not really a part of that life.  You go through the motions and you appear okay to those around you.  But, the only thought that motivates you throughout the day is getting to the moment you can break free and be with that person. 
So, cut to a day when my cousin Lisa and my aunts came to visit.  I was so happy to have family connected to mom, with me!  My aunts are the most fun people, I daresay in the world.  They are filled with laughter (as was mom) and they have the kindest hearts and the best hugs.  Oh, those hugs.  Lisa has all that, too and I was lifted up that they were with me. 
Now, I don't remember the circumstances of going to Dunkin Donuts.  I know Krista was in the car with me and my aunts and Lisa were in another car.  This particular Dunkin Donuts has the worst parking.  I backed out of my spot and got in line behind the guy who was already in line.  We were heading to the hospital, I was thrilled to have family with me, I was feeling positive but my head wasn't on the parking lot, only getting out of there. I was annoyed that the line was so long to get out and the guy in front of me kept putting his reverse lights on.  We sat there what felt like a very long time and then I realize he was waving his hands like a maniac for me to back up.  He was actually backing into my spot.  You could tell he was livid and as I put my window down to apologize he was muttering all kinds of things.  At this point he was backed in spot (which by the way was ridiculous in this parking lot because I had no way to go around him so I had to back almost on to road to let him into my spot.)  I rolled down my window knowing he was angry and calmly said,  "I am really sorry sir, I had no way to know you were trying to back into my spot."  He got out of his car, did not even glance in my direction, and yelled,  "Go to hell Lady." 
Now, on any normal day I would have been just as shocked as I was that day, but something was so weird.  I wanted to (but didn't) yell, "Hey asshole, guess what...I am there."  I debated with all my heart walking in right behind that guy and giving him a piece of my mind.  Like "all that time you were trying to reverse and getting pissed at me that I couldn't read your stupid mind about making a stupid parking lot move, why didnt you just open your door and yell back to me asking me to move so you could park."
I didn't because I had Krista with me and figured guy could be crazy.  Also I had somewhere way more important to be.  Finally, because the mature part of me realized that if he was telling me to go to hell over a parking space, that dude may have been in a worse hell than mine. You see my mom was dying, but I wasn't giving up on life.  I still took joy in what was around me.  I still could laugh. I still could hug.  Preparing yourself to say goodbye is not going to be easy, but we still get to choose how we let it affect us.  I figured that man's hell was worse because he was choosing hate and anger.  I hope he has moved past that in his journey.  I also hope that once in awhile he thinks about that time  and wishes he could take it back.  It is a good reminder to me when I get upset with people to remember I have no idea what journey they are traveling right now. And as mom would say (I was reminded by my aunt just the other day) we have the potential everyday to be Jesus with skin on to those around us.  Think about that for awhile.  Jesus with skin on.  Our potential for compassion knows no bounds.  Amazing.

Tuesday, July 10, 2012

The gift

I need to move away from doctors and hospitals a little bit and just talk about mom's relationship with the world around her.  As we came to the end, and I could not quote you any exact dates or times, but as she came in an out of the acute hospital and when she landed in a new rehab because her former rehab said she was "too sick" for them to be medically able to handle her care, she started to make her world smaller.  I didn't think much of it at the time. I was still living in sharp denial of the end being close.  And some of the friends who read this now, might be surprised at what I am about to say, but she asked me not to accept phone calls for her any more.  So, she stopped answering her phone and while I was there if I answered she wanted me to make excuses about why she couldn't talk.  She told me this was because she needed energy focused on what she needed to do to get better. Only now do I realize she was preparing herself and the people she loved for the end. 
Our conversations became more centered on immediate family and our plans for the future, but not so much her plans for the future any more.  One day when she seemed really sick and out of it I heard a nurse ask her what was wrong and my mom (who was not aware I was outside the door) said, "I am so worried about my kids. I don't know what they will do without me."  It was that nurse who later told my brother and I when we asked about mom's health.  Look she is really sick, but I have seen patients fight hard and get better.  If she has strength of spirit she will get better.
Right this moment, as I write this, I know exactly why that comment has bothered me so much all of this time.  She is wrong.  Strength of spirit does not always mean you fight to be healthy again.  Strength of spirit means you are strong enough to let go.  I believe mom fought with all her might, but that she knew before any of us her time was at the end. I believe her strength of spirit kept her alive long enough for her kids to be ready to say goodbye.  What an amazing gift.

Monday, July 9, 2012

The difference

Yesterday I sat in church and my mind continually went back to my mom.  I was trying to pray for someone special who has been in an awful lot of pain recently and mom kept popping up.  I thought about how much going to church with her meant to me.  When everybody went their own way and it was just her and I at home we had some rough times, of course.  Come on, I was a teenager, but church was always the one place we became partners again.
Mom would sing proudly and that is why I sing so proudly.  Mom would stand up straight and tall and hardly move during the mass and that is why I do the same.  So much of what I am I owe to my mom, but she doesn't know it.  I mean I am sure she knows it on some level, but I just want to sit and talk to her and say two things. Thank you and I am sorry.  Thank you for just everything and I am sorry because now that I have a 12 year old I know what a pain in the ass I was.  I love my daughter with all my heart, but come on she is 12 and some days that means I am counting the minutes until she moves out and into a dorm room.  Let's be real.
So in the middle of reliving my mom's last months in this life, I am struck by the fact that I got so much time with her at the end.  I thank God for that time even with all that pain that accompanied it.  When my dad died it was sudden and unexpected.  I mean we figured he would be dying for about 10 years before he actually did because he was not a healthy guy, but he was living life fully right up to the last as he was trying on sports coats in Sears when he had a massive heart attack.   That was shocking to say the least.  But if I had to tell you which way was better, I would choose mom's way.  Remember it is me choosing not her.  She lived the pain.  She might say something different.  But, you know, we had a chance to relive memories together, to pray together, to sit silently together.  In the midst of the storm that was the end, I did get to say how much I loved her.  I did thank her.  I did tell her I know that she was worried about me but that I would be okay.  Because I told her that, I knew I had to live that.  Making her the promise that I would be okay meant I had to keep that promise and that has made all the difference.

Friday, July 6, 2012

Something must be wrong

As I said when I started blogging about mom's dying, sometimes events will be out of order.  I feel the need to begin with that because today I would like to write about another time I was left waiting and anxious while mom assumed I just wasn't there. 
At this point she was back in the acute hospital.  The infection had apparently spread to her blood stream and now they were going to do a test (I can't remember the name of) to see if any infection was on her organs, especially focused on her heart.  For this test they would be inserting a camera, similar to, but not an upper endoscopy.  She was very nervous about this test and although she was heavily drugged she would be awake and aware during the whole procedure.  Before that though they had to place a new pic line because her arm had a blood clot so they were switching to her other arm.  I asked her if she wanted me involved in that one and she said no.  I waited with her outside of the room with her on her stretcher and me uncomfortable standing in the hallway.  At this point she was pretty weak and each new test brought me concern that it would be the last time I would see her.  Finally, they brought her in and the secretary (different from yesterday's secretary in her sweetness) brought me a pager and said they would page me when mom was finished so that I could roam the hospital.  Roam I did (thank God) because the first place I roamed to was to the part of the hospital they would be doing the next test. I wanted to be sure I knew where it was so I would not be stressed in front of mom. 
After an hour went by I checked in with the secretary who kindly reminded me they would page me when she was done.  Putting in a pic line should not ever take an hour but they had been having trouble with blood clots and her arms were swollen.  After 2 hours though I became freaked out and assured the secretary that if they were still placing the pic there was some kind of problem and I needed to be in there with her.  She agreeably went to check on things and came back with a sheepish look on her face.  They had finished over an hour before that.  She said, "You should be able to find her back in her room."  "Oh no I won't,"  I stated. "She was supposed to have another test and I was supposed to be there with her."  The secretary apologized up and down that I had not been paged.  I don't remember assuring her that it was alright because it absolutely wasn't alright.
I found mom in the next place.  The doctors let me walk right in but they had already started the test and in fact, were almost finished.  The good news they had for us as they sat looking at her heart was that the infection was not there.
We were often getting some kind of "good news" from the doctors and tests that never matched up with what was happening to my mom.  She was dying.  We just weren't sure what was physically killing her.  Once they had used up every test they knew to give her they would sent her back to the rehab hospital sicker than she was before.  To the point that one time the original rehab refused to take her.  She was too sick for them to manage they told us and so we had to find another rehab.  When my sister questioned the doctor about continuing to send mom out when she was sicker they informed us that if there is no test to be done she can't just stay in the hospital.  We just found that so ...GROSS.  When you go to a hospital I always assumed you either died or came home better.  Why was my mom continually going to rehab sicker than when she entered the hospital and yet everybody said she should be getting better.  If they could have just had the knowledge that, "no, she shouldn't be getting better."  We would have made some plans for how she could end her life happily at home.  But we were still dragging her through everything so that she might get better.  In fairness, she was fighting the good fight too.  She wanted to get better and to do that we needed to know what was wrong. 
Meanwhile, mom and I talked about everything under the sun except dying.  Mostly I told her about what Krista was doing and she and I made plans for when she came home.  She was so damn lonely in the hospitals and she got great pleasure when I showed up at 330.  She counted on that time.  I take some peace in that. 

Thursday, July 5, 2012

Where is the fight?

One day when I went to visit mom she was in distress.  "Jen it was awful" she told me about the nurse who changed her dressing. "Her name tag kept hitting my leg and the pain was so intense, not to mention she can get germs in it."  It seemed the counselor in charge of working with us was never actually at the rehab hospital so I left a message telling her that was unacceptable. The next thing I knew that nurse was assigned to a whole different floor.  I know this because I was there everyday from 3:30 to 6ish and she would be getting on the elevator and heading to a different floor. She didn't speak to me and I didn't care.  My head was focused on one thing only...what my mom needed. 
Speaking of that, most often what my mom needed was someone to be with her at doctor's appointments.  This lovely woman was on some heavy pain medication that helped her to forget.  The problem with that is when you have to make decisions about your health care you don't want to be forgetting what the doctor is saying to you.  That being said, I made arrangements to be at as many of her doctor's appointments as possible.  She was taken by rehab transport on a stretcher and I met her there. 
One day she was scheduled to have her leg looked at as they were thinking of when they might start grafting.  This was also when she seemed to be getting sicker. She was weak and unable to eat.  I got out of work as early as possible and headed to the hospital where the appointment was beginning at 3:30.  I had already had some experience with this secretary and so I was prepared for the nasty sneer she had on her face.  I told her my mom was in for an appointment and I was supposed to be with her.  She said, "Well she is with the doctor."  I explained patiently that I knew that but that I was supposed to be with her.  To this day I cannot imagine I am the only patient who needed to be with her mother while the doctor worked with her, but the secretary seemed so very confused.  She told me to sit in the waiting room and she would page the nurse that was with them to see if it was okay.  This next part makes me so mad at myself.  I sat there waiting until 5:00.  I am not sure what it was that kept me sitting there and not asking her what the nurse had said.  All I know is that at 5:00 the nurse walked out with his backpack on and clearly, knowing someone should no longer be in the waiting room because all patients were gone, he asked who I was waiting for.  When I explained to him what I was doing there he got a horrified look on his face and told me to wait right there.  The next thing I know a (I assume some kind of manager) came out and apologized profusely.  You see, the secretary never did page the nurse and so at 4:30 the rehab emts had wheeled my mom out the back door and back to the rehab hosital while I sat there waiting to get in.  To this day I wish I had raged in anger and yelled and screamed.  But I didn't.  They didnt even have me go near the secretary and they got the doctor who agreed to sit with me and tell me everything that had happened during the appointment.  I focused on the goodness of the doctor and not the total ineptness of the secretary.  I drove right to Fairlawn and filled my mom in on what happened.  She was like a balloon that all of the air had been let out of.  She didn't seem angry or sad that I wasn't there. Only really, really exhausted.  She told me not to be mad.  She told me to go home and get rest. 
The great news was the leg was getting better.  That damn leg was driving us crazy.  The big question would continue to be, "Why was the leg healing so well when my mom appeared to be getting sicker and sicker?"   The bigger question I will focus more on in upcoming posts is, "Was my mom giving up?"  In the next few posts you will read more about doctors and nurses telling us mom had to fight.  I think they were wrong.  I think the day I felt Peggy in that room mom was already on the journey to die.  I believe mom knew it too and I get upset with anyone who would insinuate she just wasn't fighting.  Much later, when we found out what was actually happening inside her body I would realize she had been fighting longer than many would have expected.