A Cold Hell

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If Hell is a hot place, then sign me up.  The past couple of weeks have been miserable on so many levels.  Hell, right here on Earth.  Underlying all of it has been COLD.  I haven’t been able to warm up.  I have been taking hot baths and drinking tons of coffee.  I’ve made pot after pot of hot, nourishing soup.  I dress in layers and huddle under blankets when I am home.  Nothing I do seems to warm me up completely.

Mom is still hanging in there.  She is failing, but it is a slow process.  We have begun hospice care, and she seems to love the extra attention.  She isn’t in any pain.  Something hovers around the corners of the room, though, and it chills me.  She is often confused, and she has lost her hearing.  Visits are brief and quiet.  I spend more time talking on the phone talking to the legion of healthcare providers than I do to my mother at this point.  Of course, life does not stop while we wait for death.  Four kids, work, my own physical needs, all of these things keep inserting themselves into the mix.

Last weekend T and I took Luke and his girlfriend back to school in Milwaukee.  I couldn’t/wouldn’t commit to going along until practically the last moment.  Mom was stable, and T insisted that I come along.  Luke wanted to show us the house where he would be moving at the end of the semester.  He had been looking forward to the four of us hanging out together on his turf.  It meant a lot to our son.  I knew that, so I went along.

I had been doing a pretty good job of concealing (denying!) the fact that I was sick.  I had too many things that needed my attention.  My mom was dying, for God sakes!  What did I have to complain about?  I pushed through it and collapsed at the end of each day.  The trip to Milwaukee took things over the top.

It was bitterly cold when we left that morning.  I got chilled and couldn’t seem to shake it.  (uh….a fever tends to do that!)  We moved the kids back into their dorms, T and I checked into our hotel, and we all headed out for dinner.  By the time we finally settled back into our room, I was shaking with cold.  I took a hot bath, but I still shivered.  By the time I crawled into the bed, T was concerned.  He wrapped me in his arms and held me close to warm me up.  Eventually, I stopped shivering, but my sleep was fitful.

The next morning, hours from home, I was still freezing.  I tried to ignore it.  I wanted to get out of there as quickly as possible and make the drive back home and to the hospital to check on my mom.  I jumped into the shower, and I don’t really know what happened.  Suddenly T was there.  I had passed out.  My first thoughts were disappointment in myself.  How could I be sick?  I had too many things to do!  I had too many people depending on me.  I couldn’t be sick now.  Not now.

I saw the doctor on Sunday when we returned.  Of course I didn’t listen to his advice.  Take it easy?  Uh huh.  No.  My mother was dying.  I couldn’t take it easy right now.  I was planning a meeting later in the week in Chicago, an important meeting.  Very.  “Taking it easy” was not possible at this time.  Thanks anyway.

I visited my mom, unpacked, did laundry, ironed, and went to work on Monday.  By Tuesday, I wasn’t even able to get out of bed.  I tried.  Believe me, I tried.  At 6:30 a.m., I dragged myself into the bathroom to get ready for work.  I sat in the chair by the counter and laid my head down for a moment.  I thought it would be a moment, but I fell asleep in the bathroom before I was even able to begin getting ready for work.  That was it.  I was toast.  I had to admit it.  I was sick.  I spent the day sleeping, and sleeping, and sleeping some more.

I was back at work the next day.  By now, everyone was looking at me like I scared them.  I must look like hell!  “Why are you here?  Go home!”  I couldn’t.  I had meetings all day in preparation for the trip to Chicago on Thursday.  I had to meet with the hospice staff in my mom’s room later that afternoon.  I had too many things going on and too many people depending on me to go home and be sick.  I pushed through.  I kept going.

On Thursday, I huddled in my seat on the train to Chicago.  I froze the entire time, wearing my layers of clothes, wrapped in my scarf and coat.  At the hotel, I begged for some coffee from the front desk.  A kind woman brought coffee and cream to my room.  I sat on the heating unit, looked out the window, and drank my coffee while I warmed my feet.  I looked down at the people below.  Everyone was scurrying to get where they were going.  The wind was biting and bitter.  I could feel it sweeping into the cracks around the window far above the people I was watching.   I had hoped to see my son while I was in Chicago, but he had been given tickets to a concert.  I told him to go.  I insisted on it, and then I sat in my room crying because I was so cold…and now alone, too.  I had come to the city hours earlier than the others so I could see Andrew.   Now I had four hours to sit there freezing and alone until I met them for dinner.  Once again, I hated Chicago.  The city felt impersonal and uncaring.  I was just a speck, a cold, lonely speck.  Pathetic.  I really, really hate feeling sorry for myself, but I was doing a stellar job of it!

The dinner was work.  Schmoozing is work.  I had to be ON.  We all had to be ON.  It was OK, though.  The whole dance of egos was interesting to observe.  I soaked it all in.  The parrying and the posturing amused me.  Several people attending the dinner had obviously spent a good deal of time in the bar before they arrived, so things were interesting from the word go.  Once again, I was glad that this is my job, but not my LIFE.  While some people live and breathe this kind of thing, I have my secret.  In my heart, I am a country girl.  At the end of all of this, I will be smack dab in the middle of a cornfield, safe and sound, with my ego checked at the door.  The reality of my life, mom, wife, daughter, hillbilly at heart, keeps me grounded.  I was amused as I watched the dance of self-importance at the table.

I was up at 5:30 this morning to get ready for the meeting.  I was excited and the adrenaline was flowing.  This was it!  This was an important step in a development project that I have been a part of for several years.  The results of this project will have a significant and lasting impact on the entire region.  I was/am thrilled to be able to be a part of this process.  The Willis Tower (forever the Sears Tower to me) is where we held the meeting.  As I stood in the lobby, I remembered a time years ago, when Luke was 3 years old.  He had broken his leg months earlier, and the treat that kept him going was knowing that once his cast was off, we would take him to the Sears Tower.  That day, years ago,  had been a victory for him.  Now, years later, I was humbled once again.  As I stood in the lobby, mentally preparing to make my presentation, I took a deep breath.  The Sears Tower!  I was giving a presentation in the SEARS TOWER today!  Well, look at this little country girl!  I squeezed my eyes shut and soaked in the thrill of that moment.  People strode purposefully past me.  Everyone seemed to have somewhere to go.  Everyone seemed confident.  I was a part of that!  REALLY??  Me???  Yet again, I felt amazed by the journey of my life.  The meeting was amazing.  All of the planning and hard work paid off.  More meetings are set for next week, and our project is not only on track, but it is gaining momentum.  I am so very proud (and lucky) to be able to play a small part in this project.

Several hours later when we stepped outside, the snow had begun.  It was beautiful, yet daunting.  This was not going to make the trip home an easy one.  I had train tickets for late in the afternoon.  By the time my train arrived, it would be dark, and I had an hour’s drive to make it back home.  I cancelled my train reservations, and accepted a ride home with a co-worker who had driven to the city.  Once we got on the road, I wondered if I had made a mistake.  It was a white-knuckled four hour drive in the snow.  We saw one accident after another and had a few near-misses ourselves.  All the while, I was freezing.

I’m home now.  It’s pitch dark outside.  No city lights here.  The wind howling up from the fields is the only sound I hear.  I’ve been snuggled under a blanket ever since I got home.  I took a much-needed nap, and I am finally beginning to warm up.  There are many things I should be doing tonight, but none of them will get done.  Tonight I am taking care of more important things with a dose of Great-Grandma’s blanket and a warm, cozy house in the country.

 

 

 

 

 

 

 

A Conversation No One Should Have With Their Own Mother

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We have watched my mother’s health steadily fail for the past six months.  In December she fell and ended up in the hospital.  She wasn’t strong enough to join us for Christmas.  It was my first year without MY family for Christmas, and even though Mom and I have had our issues, not having any parents or grandparents around for the holidays was a very sad thing to face.

On New Year’s Eve, Mom was taken from the restorative care unit to the hospital due to congestive heart failure.  More dialysis, in addition to the three other times each week, helped to relieve the symptoms.  As the days passed, it became clear that she was failing.  Her weight dropped below 100 pounds.  Her mind was becoming fuzzy.  She began to lose control of her bodily functions.  She hid her medication.  She though that she was on a cruise ship.  She thought the nurses were trying to kill her.

I called a meeting with her Nephrologist.  I wanted to know what the long-term prognosis was.  Would Mom ever be able to return to independent living?  The answer was no, yet he still “held out hope.”  Hope for what, I am not sure.  Her kidneys had not functioned  at all for years.  She can no longer walk.  She is on oxygen, and a million different medications.  I’m not sure what his definition of “HOPE” is.  She wasn’t going to regain health.  What he meant by HOPE was that she could be kept alive with extensive medical intervention so that she could linger for a few weeks in a nursing home.  I asked him if anyone had ever considered discontinuing the dialysis.  Well, yes.  Had they ever discussed that with my mother?  Well, no, they hadn’t really thought it would come to this point.  They hadn’t thought that she would live this long.  (So many of years of medical training, and they hadn’t considered all of the possibilities?)  I was shocked.  Well, here we were.  It had happened, and it was time to make some decisions.  What I was looking at seemed cruel.  This was no way for a human being to live….and to be kept alive.

The doctor and I approached my mom with the facts.  We made it her choice to consider ceasing dialysis.  She decided to continue to receive treatment.  I was in support of her decision.  It was obvious that she needed to  let everything sink in.  We all needed to buy some time to make the adjustment to the next step.  Mom was moved back to the rehabilitation facility and would continue to be transported to the dialysis center three times each week.  This was last Thursday.

On Friday morning, I received a call from a nurse.  Mom was refusing all treatment.  She said that she had had enough.  I was at work, had walked out of a meeting to take the call.  I asked the nurse to tell my mom that I encouraged her to go to her treatment and that I would be by to talk to her after work.

T and I drove down that evening to talk with her about what was going on.  I explained that a nurse had called to tell me what had happened, and my mom said, “They should mind their own damn business.”  She said that she was done.  She was tired.  I felt a sense of relief.  I have her medical power of attorney, and I didn’t want to have to make that decision without her consent.  I called Mom’s friends to tell them what was going on and asked them to pay her a visit.  I spent most of my weekend by her side.  It was calm and peaceful.  She slept most of the time.  Sometimes, she was disoriented and asked if Dad was out in the yard.  I tried to get her to drink or eat small bits of food that I felt would be soothing.  We watched “Parent Trap.”  The old one with Haley Mills.

On Monday, something changed.  She woke up demanding to go to dialysis.  Her nurse called me.  They were under the impression that dialysis treatment had been discontinued.  What did I want them to do?  What should they tell her?  Initially, I told them, no….no more dialysis.  Then I stood there wondering what I had just done.  Was I denying my own mother medical treatment when she was requesting it?  I called T.  What should I do?  I asked him to meet me at my mom’s room.

She was angry and disoriented.  She said, “Well, yes….I am going to dialysis.  I will die if I don’t go!”  I was stunned.  We had had moments of peace over the past few days.  I didn’t know what to do.  I stood there feeling helpless.  She lashed out at me.  She said, “I can see by the smirk on your face that you enjoy having this kind of control over my life.  You want to pull the plug.”  I was speechless.  I didn’t know what to do.  I didn’t know what to say.  I looked at the floor and reminded myself over and over not to say anything that I would live to regret the rest of my life.  I looked at her calmly and told her that there was not one thing about any of this that I was enjoying.  I told her that she had made the decision. She asked me where Dad was, and I blurted out that he had been dead for two years.  I burst out crying and had to turn around.  T sat there in the middle of a terrible situation.  I remember him talking calming in a low voice to her, but I don’t know what he said.

When I came back near them, and was more composed, she looked at me and apologized.  She said that she wished she knew where our relationship had gone wrong.  I felt adrenaline flood through my body.  Thirty years of wrong.  How could we resolve thirty years of wrong?  I had been determined to do right, not to let past differences and slights cloud my judgement in making the best medical decision for another human being.  I had been kind and caring.  All of this came out of the blue, and it shocked me.  I have never been so hurt and shaken in my life.  I wanted to run from the room, and running away is not usual for me.  I wanted to melt.  I wanted to cease to exist in the middle of this life of mine.  Too much hurt.  Too much.  I was shaking and crying.  I told her to go to dialysis.  I said that I refused to feel responsible for making this decision to discontinue treatment.  “Go!  Please go.  You don’t have a plug.  I am not pulling a plug!”  I left the room to tell the nurse to make arrangements for my mom to be transported to dialysis.  The nurse looked shocked.  She advised that my mother may not make it through a treatment.

There was another call this morning.  This time it was from the Kidney Center.  They had been surprised to see my mother show up for treatment.  They discussed a feeding tube with her.  They discussed hospice care.  They suggested discontinuing treatment.  They wondered what I thought.  After all, I have that damn power of attorney.  I told them that one of their own doctors had told my mother that there was hope.  Yes, hope for a day, a week.  They didn’t think that she would live out the month even with treatment.  There was a meeting later this afternoon with all of the Kidney Center staff.  They would discuss my mother’s case at that time and call me later.

It was determined that treatment was no longer of any benefit to my mother.  She could continue to receive treatments, but at this point, they may do more harm than good.  A feeding tube would enable her to have a little more time, but my mother had already said that she didn’t want to go that route.  Did I want them to talk to her and arrange hospice treatment or would I prefer to tell her myself?

Tonight T and I went to tell my mother that there was no longer any hope.  A few days, a week, a month at best.  We entered her room, and she was sleeping.  I woke her up and asked how she was feeling.  She was groggy for a while, and we three sat and watched HGTV.  I didn’t know how to begin this conversation.  I was at a loss.  T finally began talking.  Quietly we explained everything.  She just looked at us.  What do you say when someone tells you that it’s real, you are now dying?  Mom, this is it.  There isn’t anything left to do.  I told her that I wanted the time she had left to be comfortable and full of family and friends rather than more and more medical care.  I told her what to expect physically.  There should be no pain.  It would be peaceful.  (I pray to God.)  I asked her if there was anything she wanted.

She asked me if I believed in Heaven and Hell.  I told her no, I don’t.  I said, “I believe life is Hell enough, what waits on the other side is Peace.”

As T and I drove home, he told me that when I had stepped out to talk to the nurse, my mom had asked him if I was OK.  He told her that this was not easy for me.  She is all I have left of my family.  When she is gone, I don’t have anyone else left of my family.  He told her that I was carrying  a burden of guilt, because I didn’t want her to think that I was responsible for ending her treatments.  She said, “Why would Pam think that?”  He reminded her of what she had said the previous day, and asked her not to say such things again.  He told her that we would do our best to care for her, and asked her to leave me with peace.  I was shocked by what he told me.  I didn’t know he would defend and protect me in such a way, and I loved him for being able to say the words that I was not able to speak.

 

The Wisdom To Know

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It seems like a lot has happened since my last blog post.  A lot, yet nothing much at all.  There were no significant, life-changing events, but yet I feel a certain sense of change.  Christmas has passed.  It is a new year.  I am another year older, having celebrated a birthday during my blogging absence.

I apologize for temporarily shutting down both blogs for a period of time.  It was not my intention to cause alarm or concern.  I simply needed a time to hibernate.  I needed a time of quiet reflection.  I suppose I needed solitude.

The holidays were filled at times with deep sadness while other moments were shining with a kind of joy that I have not allowed myself to experience fully in a very long time.

I had ten days of no work, time with all four kids home, happy and getting along well.  I ate too much.  At times, I drank too much.

T and I  rang in the New Year with old friends.  For the first time in years, I was not on stage playing music, but I was one of the crowd enjoying the entertainment.  That made me sad, and it felt odd at first.  Eventually, though, I was out on the floor dancing up a storm.  That night, I belly laughed for the first time in over two years.  The sensation caught me by surprise.  At first, I didn’t recognize what was happening, and it made me laugh even harder in wonder at the privilege of having the experience of happiness and joy flash into my life for a brief moment once again.

Acceptance.

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

Those were words I heard my dad repeat hundreds of times.  My dad lived those words.  They were written and framed in a variety of places in his home so he would never forget.  He was reminded over and over to accept with courage whatever life sent his way.

I have never had a problem with courage.  Many times, I have faced down my fears.  The word CAN’T, the word NO, those were words that offered a challenge to me.  Being told that something was not possible only spurred me to try harder to prove the possibility.  Fighting for what I wanted or what I believed in was never the problem.  It has taken me two years to learn an important lesson.  There are some things in life that I cannot change.  Can’t.  No.  Some things are beyond my power to control.  I know that concept may seem like a no-brainer to some, but not to me.  I thought if I fought hard enough, tried hard enough, I could make practically anything go MY WAY.  Of course, I have always understood that there were things, like death, that were beyond my control, but beyond that, I stubbornly, bull-headedly believed that there was very little else that I could not sway, or fix, or influence.  I was wrong.

While I may have not lacked courage and conviction, something else has been lacking.  A great, gaping hole stood in the middle between me and acceptance.  That gaping hole was wisdom.  “…the courage to change the things I can; and the wisdom to know the difference.”  Two years of struggle, and an unwillingness to admit acceptance into my life, has taught me that WISDOM does not come easily.

Along with wisdom comes acceptance, and acceptance brings with it a sense of calm.  For the first time in so very long, I have had moments of calm and peace.  I have had moments that have allowed me once again to recognize myself, the woman I once was, the woman I hope to be again someday.  Acceptance does not take away sadness or loss, but it has allowed me to occasionally step off of the hamster wheel.  This wisdom has allowed me to stop punishing myself.  Yes, some things are beyond my control.

I now understand why my dad found it necessary to keep the words of the Serenity Prayer near to him.  Like me, he needed to be reminded.  It was a lesson that had not come easily to him, but once learned, he never forgot the value of that lesson.