Is it okay to be mad?

In a recent post I mentioned that I was upset about something and that I would leave it to a future post.  Given how I am feeling right now I think that I will go ahead and talk about this along with other things that I am angry about.  Sadness and feeling lost were things I expected I would be feeling when the time came for my mother to leave us.  I didn’t expect anger to be a dominant emotion though.

Let me preface this with awareness that these emotions are probably quite normal and that I cannot change the past and therefore need to find a way to let go of this type of baggage.  Let me also say that I also realize my anger is coming from a place of deep care and love and that I don’t mean for anyone to take offense by what I am going to say.  Really it comes down to me being mostly mad at myself.

There are a number of things about my mother’s passing that bother me.  The speed at which she passed, the struggle she had leading up to it, how I handled certain things and the things that should have been done, but weren’t.

The most upsetting part about my mother’s death, isn’t that she died (we knew that would happen) but rather how she died.  I am not naive to think would could reverse liver failure.  However, we could have alleviated some of the side effects of liver failure.  You see there was a clear signs and symptoms of her liver failing and had I known what to look for I could have made things more comfortable for her.  In a small way I blame myself for not looking ahead and learning about the various things that could go wrong and what that would look like.  Mostly, though, I am mad at the medical profession for failing us.  Alright I should be more specific.  I am mad at the emergency room staff that looked at my mother a week before she died.  Here is the situation.  My mother was complaining of being super tired.  At first we thought that she was just over exerting herself in the effort to get the house ready for company for Labor Day.  However, I grew very concerned when she started falling asleep in the presence of company.  I thought this was just a return of zombie mom and it was medicine related or something that would go away in a few days.  When mom said she wanted to go to the ER though, I knew it was more than that.  It was Saturday morning Aug 30th when she said this and we changed our plans for the day to instead spend it in the ER.  Here is the first things that really upsets me.  I didn’t go with mom to the ER.  Jodi was down and she really wanted to get an idea of what taking care of mom was like so I told her to take mom to the ER and I would come down later.  I selfishly did not want to wait in the lobby for a couple of hours like normal.  Stupid me being lazy.  Somehow the ER staff got the notion that my mother was there for pain.  Had I been there to check her in, I would have told them that the problem was her lethargy.  I am not blaming my sister or my mother for anything because I have no idea what was done before I got there.  I am simply saying that when I got there, they were searching for a reason for pain when they should have been searching for a reason why she couldn’t stay awake.

So, when I get there and talk with the doctor, she was ordering tests to look for a bilary duct blockage because that is what her blood work indicated.  I told her that her liver counts have been all over the place for the past 9 months and that previous suspicions of gall bladder issues turned out to be negative.  I asked her about the real issue and that was her lethargy.  The doctor said she didn’t know about that and that she things its a problem with the gall bladder.  So off they go on a wild goose chase for this phantom gall bladder issue.  They did xrays, ultrasound, CAT scan and an MRI before coming back and saying there is no gall bladder problem.  I told them that sounds about right and asked what about the lethargy.  The doctor said she thinks it is related to pain medication, wrote prescriptions to increase pain medications, said she is fine and sent us on our way.  Here is the second mistake I made that really angers me.  I didn’t press the issue.  I didn’t dig deeper.  I left there knowing that there is something wrong and didn’t get them to tell me what.  They knew what it was and they did not tell me.  They knew I had medical power of attorney, but did not tell me.  I will explain a little bit more by describing what happened next and you will see why they not only knew, but they purposely sent a terminal woman packing.

This was Labor Day weekend so her doctor’s office was closed on Monday.  I spent the rest of Saturday, Sunday, Monday and Tuesday wondering what the heck was going on with my mother who was progressively getting worse.  On Tuesday morning I called her doctor’s office and asked for the earliest appointment.  They said the earliest was on Friday.  I didn’t like that answer so on Wednesday I went down to the office where they could see I was a person and was serious when I wanted the earliest appointment.  They got her in to see her primary that same day.  Now this is 4 days after the ER trip.  The doctor came in, had the report from the hospital and without hardly looking at mom, said “You are in liver failure”.  The ER report said that she had fluid from her liver building up in her abdomen.  The ER report says this.  They knew what was happening to her.  Her primary said that there isn’t any reversing this and that we should get hospice involved.  Mom was still coherent at that time and agreed.  I started and mom finished asking how much time and he said less than a month.  He said that there is something that we can do for the lethargy.  He said that it was probably a buildup of ammonia in her blood and that we should go down right after the visit to get her blood drawn (he was puzzled why the hospital did not do an ammonia test).  It took until Friday morning to get the results of the test, that is two more days gone by.  The result was that her ammonia level was just over 200 which is very high and was certainly the cause of her lethargy.  The good news is there is a way to stabilize her ammonia levels.  There is a prescription drug called Lactulose which is a strong laxative.  It would be helpful to know that ammonia in the body is a byproduct of protein breakdown in the intestines.  The idea behind the use of lactulose is that if you can prevent this breakdown then no more ammonia will be generated.  There was just one catch, it was already too late for mom to be effective.  If we had known that her lethargy was being caused by a build up of ammonia and that there was relief for that on Saturday when we were in the ER then there would have been enough time to hopefully make things less stressful for mom.  Again, we couldn’t have reversed the liver failure and she might has still died when she did, but there is a good chance that she would have been awake and more alert leading up to that point.  I am so pissed off that the ER knew that she was in liver failure and did not tell us, knew that a buildup of ammonia is common in hepatic encephalopaty and that lactulose could have been of some relief.  Instead they were looking at a terminal woman and just wanted to send her home rather than deal with it.

Now, for those people thinking that maybe going to sleep and not waking up would be a good thing, that isn’t exactly how things happened for mom.  She had many periods where she was awake (even a couple of days prior to her death she knew enough that she wanted to go to starbucks and so we reluctantly took her).  When she was awake, she might have been groggy and weak, but she wanted to be up rather than sitting.  She knew that she was sleeping a lot and she just didn’t want to sleep anymore.  It was torture to watch and must have been even more so for her.  If we could have made that even a little better, then I think that would have been what she would have wanted.  So I feel like my hands were tied and I couldn’t do a damn thing to make this better for her.  If we could have started her on lactulose that previous Saturday then we might have had a more time.

This more time notion is another thing I am upset about.  We knew for many months that the end would come at some point.  When I think of all the minutes and hours wasted not spending time doing something together or not talking about things, it really hurts.  I am disgusted with myself for selfishly wanting time to myself when I should have been spending that time with her.  I have the rest of my life to live, why didn’t we do more when we could.  I realize that we did a lot, but I just feel like it wasn’t enough.  I didn’t get enough stories.  I didn’t get enough video.  I didn’t make the most of the time we had.  I knew going into this that we needed to make the most of it and still we did not.

One of the things mom wanted to do was write each of her kids a letter.  She kept coming up with reasons why she couldn’t do that.  I am mad at her for not doing this.  I need something from her the most right now.  I need whatever it is she wanted to say to me in a letter.  Originally she said that it was too emotional for her to do it, then it was her fingers were to tingly, then it was she couldn’t sit long enough to do that.  Why didn’t she just get that done.  Why didn’t I have the foresight and demand that she do this for her kids.  She was the one leaving, we would be stuck behind.  We would need her guidance from time to time.  We would need a reminder of her love.  I so very much want to look at my mother’s handwriting and know that she took the time to say things to us.  Am I just being selfish and stupid for wanting this?

I hate that I second guess how I did as a caretaker.  I am upset with myself that for all the planning, I feel like we didn’t do any planning.  I get angry when I hear someone say that she is with dad now because I would much rather have her here with us.  Of course I am glad that she is no longer in pain.  I am glad that she is no longer suffering.  Why does that all shift to us?  Why do we now get the pain and suffering?  I am upset that I sound like such a baby.

It is clear that I have some emotions to work through.  I keep hearing that time will heal all.  I sure hope so because I really want to get to that place where I feel glad that I was a part of her life and not sad that I am missing her so much.