Guilt and Shame

The hospice house was tucked in next to a green hill, down a long and winding private blacktop road.  It wasn’t what I had imagined, and it astonished me that I had lived in this town for almost 25 years and didn’t know how to find the house, not even knowing what section of town it was in.

As I parked and got out of my car, I looked at the entrance.  Everything was beautifully and thoughtfully planned out, cared for, tended to.  It was May and there were blooming plants everywhere.  When I came to the door, there was a plaque asking visitors to ring the doorbell.  Everything about this place seemed like a house, not somewhere Medicaid will pay to have you die in peace.

It was an even greater surprise to me that the volunteer who opened the door, was my supervisor from the very first job I ever had in high school.  It was wonderful to see him there, albeit a bit confusing because I never would have thought him to be interested in this type of work.  In “real life,” Charlie was intense and always seemed anxious.  Here at the hospice house, he spoke so quietly I almost didn’t hear him and there was no sound of tension in his voice.

I told him who I was there to see, and he brought me to The Bird Lady’s room.  She looked just as I had seen her last, although much thinner and with a yellowish-grayish cast to her skin.  This was one of her first few days in the hospice house, and she still had her wits about her.  I went over and gave her a big hug, and then noticed her evil sister sitting in the chair across from the bed.

I exchanged pleasantries with her sister, but I was there to make peace with The Bird Lady.  To make peace with who we were to each other in life, and to make peace with the fact that she was days from death.  The evil sister didn’t leave and consistently interrupted our conversation.  The Bird Lady eventually asked her sister to go find her some ice cream, and then I was able to spend a few minutes along with my dear godmother.

I don’t remember well what we talked about, but I do remember I didn’t cry.  I needed to see that she was ready to go, and it was very clear that she was, indeed, ready.  Most of my visit is blurry in my memory, except for a notable scene with her sister.  Something I am ashamed of to this day, something I feel deeply guilty about, something I can never change.

The Bird Lady:  Rose, will you wheel me out to the porch so I can have a cigarette?

Evil Sister:  You know that is against the rules and the nurse will have a fit if they find out.  Rose, you can’t take her out there.  What if she falls?

The Bird Lady:  Rose, will you?

Me:  (looking back and forth between sisters and considering my fear of the rules and my considerable fear of her sister)  I think we should wait until the nurse comes back and ask if it would be okay.  I’m sure they will let you.

The Bird Lady:  (losing control a bit) Dammit, Rose!  I just want to go outside for awhile.

Me:  Your sister scares me, Sondra, and I think we should wait for the nurse.  It shouldn’t be much longer he will pass through.

The Bird Lady:  Rose Talbott!  I have known you your entire life and you have NEVER been scared of ANYTHING!

And thus it went.  My godmother didn’t know the extent of my fear of other people, of the rules, of anything really.  She didn’t know how afraid I was of life in general, and she never would.  What she would know is that I refused to take her outside, as she was literally lying on her deathbed, and I wouldn’t grant that small request.

Denying that request replays this scene in my mind over and over, even years later.  The guilt and shame of it are often more than I can bear.  I could have given her a moment of peace, and I didn’t.  Guilt and shame.

Mercy

If there was ever a time, a desire to be “fuzzy wuzzy” (as in my last blog), it is now.  Right friggin’ now. 

I think I have blogged about my godmother, The Bird Lady, before.  I think when I blogged before, it was about all of the wonderful stories that she would write about her childhood, growing up poor in the South, and then email to all of her loved ones.  Remember now?

The Bird Lady has been in my life since birth.  She has been my mother’s best friend for over 30 years.  She has watched us grow up, and has always been a fixture in our lives, sometimes more than others, but always there in one way or another.  Like a child unwilling to believe, to see, I never thought I would meet a day when she would not be around.  Granted, that day has not come yet, but it is coming soon, all too soon for me to bear.

The Bird Lady has fought a long painful battle with severe osteoporosis and spinal/nerve problems.  She has also struggled with a host of other medical problems, all related to an over 50 year steadfast practice of the eating disorder, anorexia nervosa.

She has been in unbearable pain for the past three or four years, often unable to leave the house for anything other than short periods, at some times unable to leave her bed.  Through it all, underneath it all, she has remained the godmother that I know and love. 

A few months ago, she had back surgery, the details of which I am still not clear on, but basically it was supposed to help her increase her mobility and give her less pain.  She survived the surgery, but has been, from what I understand, from what I refused to hear for quite some time, bound to her bed and home since then.  Her weight plummeted from an already very unhealthy 90 or so pounds to around 75 pounds (she is 5’9, maybe 5’10).  Her heart, already weakened from a heart attack last year and 50 plus years of a raging eating disorder, is failing.  Her lungs, complicated thoroughly from years of smoking, are failing. 

A few weeks ago, she developed a raging infection around her surgery site.  They went in, removed the metal rods that were holding her vertebrae in place, and were planning on putting in longer rods.  They did not.  They did not believe she could take any more trauma, any more anesthetic, so they sewed her back up.  Their initial plan was to revisit the surgery in six weeks.  To make her stronger, to get her weight up, to get her stabilized. 

From there, the details are fuzzy.  A lot of it, I don’t want to hear, don’t want to understand.  Even the aforementioned details are from scraps that I have listened to here and there.  I just don’t FRIGGIN WANT TO HEAR IT.  Because that would be accepting that there is a problem, accepting that she is not going to make it through, accepting that she will leave us soon.

From what my sister has told me, The Bird Lady is done fighting.  She does not want the quality of life that the next surgery would afford her, IF she would even be able to have the next surgery.  From what I understand, the next surgery would be at least six weeks away, if she makes it those six weeks.  From there, it would be IF she survives the surgery, then IF she survives the rehabilitation process.  And then, they can’t give her any sort of guarantee that the surgery would hold, that it would last, that her quality of life would improve.  I believe they are saying that there is a good chance that it would not improve.  

At any rate, she would be in the hospital for at least the next few months, if she were to survive that long, only to go to a nursing home after.  But she is done fighting.  She is giving up.  And I am trying my damndest to understand, to be ok with that. 

At this point, The Bird Lady is going to hospice.  She made the decision Saturday and will check in later today.  Her family is overwhelmed and are doing everything that they can to talk her out of it.  The doctors say that she is of sound mind and that this is not an irrational choice.  She is just done fighting.  Just done.  My sister has tried to explain this to me over and over — she just is not interested, will not accept, the poor quality of life that would be afforded to her if she was to continue fighting. 

And I want to understand this.  I need to understand this, to accept this, to be able to move on. 

But DAMN. 

Up until last Friday, I “didn’t know” that her condition was so serious.  I hadn’t seen her since Christmas, had talked to her on the phone only in passing (and Lord knows that I am beating myself up something CRAZY about the lack of contact, the lack of friggin EFFORT on my part to connect with her).  Apparently things have just been getting worse and worse, and I have refused to hear it, refused to listen to it, refused to ask questions.  My mom says that she was going to tell me how dire circumstances were a couple of weeks ago, but that there was never a good time, because she knew how I was going to react.  I can understand that, from my mom’s point of view.  She was trying to protect me, trying to make sure that I would have the support that I need when it came down to it. 

In my mind, though, I went from believing that Sondra was going to be just fine, to being told that she was not going to be just fine.  In my mind, I believed that this surgery was not a big deal, that she would fight the infection and would be up and working in her flower beds, flying her pigeons, working on stained glass, and playing bridge three times a week again in no time.  I believed this because THAT IS WHAT I WANT.  Of course, we can’t always have what we want. 

I am not in a very good space right now.  I’m trying to come to terms with all of this, but it’s unbelievably hard.  I am still in shock and denial right now.  There is still a large part of me that says that she will change her mind, fight the infection, and wait for the next surgery…and that she will be absolutely FINE afterward.  Unfortunately all evidence points to the contrary, so I am just struggling in my mind and heart with her decision.

My sister tried to explain hospice care to me yesterday.  I think at first (and even still), I didn’t understand exactly what would be the “cause,” if you will, of her death.  People don’t die from back surgery, RIGHT???  No, they don’t.  She is choosing to not fight the infection.  WHAT??  I don’t understand.  Why not?  I just don’t understand.  I can’t wrap my brain around it.  It seems so simple in my head — fight the infection, have the next surgery, move on with life as we know it, just don’t friggin’ LEAVE.  So very selfish on my part.

My sister has also tried to explain to me time and time again, and I am having an inability understanding this, to even hearing this — she doesn’t want to go on, she doesn’t want the quality of life that this would afford her.  But I don’t understand.    And maybe it’s because I haven’t seen her, haven’t talked with her, and just don’t know how bad off she is.  My hope is that I can talk to her and make myself understand what she is feeling, what she is thinking.  I need/want/have to understand so that I can be supportive.  I just don’t know what it will take to get there. 

All I can say right now is, thank God that I have Dr. Love.  He is standing by my side, ever watchful, ever protective, making sure that I am doing what I have to do.  Every minute, every hour that passes by, I realize more and more just how lucky I am to have someone that loves me, that understands me, that cares for me the way that he does.  It is something that I have never had, and I am forever grateful that I found him.  Forever grateful. 

YouTube won’t let me embed this video, so you’ll just have to click on it. 

Joe Nichols, Size Matters