Grief One Year Later- Pt. 2

Note: There is so much more detail I would like to add to this post, but my fear is that it would take away from the last days of my mom’s life.  

I wish I could say that when I got off the phone with my Dad, I ran around the house packing stuff up and drove 200 miles per hour up the road to get to my mom’s bedside.  But that isn’t the way it happened on that Tuesday.  I had gone to the gym earlier in the morning and went to work.  As someone in outside sales, we were assigned team days to be out “cold calling”- i.e. talking with businesses in the community.  On this particular day, I had gotten ready at the gym and started making my rounds in the North Phoenix area, and had knocked on a handful of businesses’ doors before making my way home just before lunch. Fortunately, Dad called me shortly after I got home.  I gathered a few things, just in case I would be spending the night, called my boss and left him a voicemail, letting him know that something was wrong with my mom, and made my way up to my parent’s house.

As I approached the front door, I wasn’t truly aware, nor was I prepared for what was on the other side.  As I opened the door, I saw my mother laying in her chair in what looked like a sleeping state.  My dad was with her, as was one of the hospice nurses. Connie was a woman of Haitian descent, her accent so thick that initially I had a difficult time understanding her. Connie stood over Barb with a washcloth on her head, quietly, yet firmly, saying her name in her ear.

“Barbara.”

“Barbara.”

“Barb. Can you hear me?”

She was trying to wake her up.

Immediately, what little calm I had left my body.  The situation was grave and in that moment, it felt like there was really nothing that I could do. When the nurse would go to get pain medicine, or my dad needed a break, I would sit next to her and try talking in her ear, hoping that the sound of my voice would wake her up.

I asked my dad what had happened, and he said that in the middle of the night, my Mom woke up with intense pain in her leg.  What wasn’t made clear was whether that pain was from phantom pains or something else, as my mom was a double amputee.  He said that her pain became so intense, and then, suddenly, she passed out.

I remember where I was the day that my Mom told me that the doctors had figured out the root cause of her health complications.  It was a beautiful Saturday morning in June, 2003, and I was living in Brighton, Massachussetts.  As a 22 year old boy, my life was in the midst of dramatic change.  The woman I was living with was actually my ex-girlfriend and, after spending nearly 8 months broken up, one night of attempted reconciliation in early 2003 resulted in her becoming pregnant with twins.   After three years of working road construction during the day and going to community college 3-4 nights per week, the new priorities I was facing immediately became my number one concern. On top of that, I had recently found out that the elderly man who I had lived above and who had rented me his upstairs attic apartment, had passed away. With the sale of his house, I was forced to move, and my pregnant girlfriend was happy to have me move in with her. So here I am, a 22 year old, scared-shitless, soon to be a dad of twins, practically married to a woman I didn’t want to be with, living out of boxes, working a dead-end construction job and desperately trying to get my sea legs under me to figure out when I’m going to get my college degree. On that Saturday morning, I was cleaning up the kitchen when my phone rang.

It was my weekly phone call with my parents.  Normally we had our calls on Sunday morning, but for some reason, this week we were able to connect on Saturday.  The call was pretty typical, catching up on the weather, how everyone was doing, normal parent and son stuff. I don’t remember much of the details of talking to my mom or dad that day, except for the brief silence on the line towards the end of the conversation, and what immediately followed.  My mom started:

“Joey, I have to talk to you about something, but you need to promise me you won’t get upset, okay?”

Those of you who know my Mom know that the words that could follow would either be earth-shattering, or completely inconsequential, and sometimes I could figure out which if I listened to Mom’s voice closely.  On that day, I had no idea- but nevertheless agreed.

“Okay, do you want the good news or the bad news?” My mom would always ask that- and I normally would always pick the good news first.  Today I went with the bad.  My mom explained that the doctors had been doing various tests, and after looking at not just the results, but the current symptoms she was experiencing- the heart attacks, the broken bones, the ulcerative colitis, the sensitivity to cold on her extremities- those were all actually correlated.  The doctors told her she had a very rare disease called scleroderma, and I’ll never forget this next part:

“In latin, scleroderma literally means leather skin, and the doctors told me that my skin will become tight as I age. So the good news is that I won’t have wrinkles!”

I forced out a laugh, and she must have sensed my lack of authenticity. She went on to tell me that the heart attacks would get worse, the amputations would be continue, that the disease would eventually spread to her esophagus, and finally her lungs and heart.  The prognosis was 5-7 years.

At the time my mom told me that, I literally didn’t know what a prognosis was. My thought process revolved around the fact that since the doctors knew what her disease was, that they would be able to treat it and she would get better.  I was in complete denial, and the strength and patience my mom showed in that conversation must have been monumental. She repeated what she mentioned before- that her condition would get worse, and she told me there was no medicine to cure her.  There were things that they could do to treat the symptoms, but those would only go so far.  I started to conceptualize what she was saying to me, and I tried to offer words of encouragement and be positive. She didn’t cry, and told me that she wasn’t going to feel sorry for herself, and that I shouldn’t either.  She was going to love her horses, spend time with Dad, and live her life as long as she could.

She asked me how I was feeling (always worried about everyone else!), and I told her I was fine.  I’m sure she didn’t believe me- she knew me better than I knew myself.  We talked for a little bit and she reassured me that nothing had changed, and that she wasn’t letting anything stop her. I heard what she said, but was having a tough time processing.  Shortly after, we said our goodbyes and hung up the phone.

On the surface, I tried to act fine and rationalized the situation by telling myself that the only difference is that the doctors had put a name onto what her health issues were.  But after I got off the phone and thought about it for a while, it started to eat at me.  I cried like a baby- why did it have to be my mother who got sick? One of the other things that I used to think was “…and my mom isn’t sick with just any old disease or some common cancer that is curable- she got stuck with this ridiculous rare disease that no one has ever even heard of!” I felt that there was an injustice- 99% of that injustice was to my mother, but also to my dad, as well as my sister and me. Mom never looked at having scleroderma as being an injustice. It was just the cards she was dealt.  She just handled every day as a blessing and tried to live life to the fullest.

At the same time, I would be lying if I said my mom never expressed her frustration with scleroderma.  It was extremely rare, but it happened.  She called them her “poor me syndrome”.  She would say how upset it made her that she couldn’t do something, or that she wished she would just “feel better.” We would all encourage her in our own ways, and then she would snap out of it.  I can still hear her saying “you’re right” and can see the smile she would get when she would hear us encouraging her. On that June day in 2003 though, she didn’t need our encouragement.  She was determined to fight and enjoy what life had in store for her.

As I looked at my unconscious mother nearly 13 years later, that conversation never entered into my mind.  In that moment, I was just desperately hoping that she would wake up.  I refused to think that God would take her from all of us without us saying goodbye.

Around 3:30 pm, with Connie, my Dad and I all huddled around her, using a facecloth on her forehead, my mother opened her eyes and looked around, then quizzically said hi, wondering what all the fuss was about.  Her pain medication, combined with the physical issues she had been through over the course of the past 14 hours had left her fairly confused.  She was able to slowly come around and asked us to call two friends to come to the house.  Naturally, they came over as soon as they could and spent time talking with my mom, who by now was acting as if nothing had happened before.  They had some great laughs, and my mom told them that she was starting to get tired.  Shortly after, my mom had fallen back to sleep, but not before saying goodbye to her friends.

As afternoon turned into evening, then to night, Mom laid asleep in her chair.  We again were unable to wake her, and the fear returned that she would  not be be coming back.  As the night got later, my dad and I discussed the need to tell my sister.  Earlier in the day, he mentioned that it may do more harm than good to let Jenn know, and I reminded him that the later we waited, the smaller the chance we would have to make sure Jenn got here in time. I had promised my sister that I would be honest and tell her when it was time, and in my opinion, we had come to that point.  My dad, always deliberate and thoughtful in his problem solving, now had second thoughts, and told me to give my sister a call.

I’m sorry I need to run I’ll write more later.

 

 

 

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Grief One Year Later

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As my family nears the one year mark of my mother Barbara’s passing, I have been looking back and remembering the long journey that took us to the moment of her transition to the afterlife. In reality, it began much earlier than the ten days I’m writing about here. For me, February 14th will always have significance because that was the day my mom acknowledged to me that she was dying.   My hope is that these posts will help others who are grieving the loss of a loved one and provide some anecdotes to prepare those who still have those loved ones with them for the road that lies ahead.

I should back up for a moment and describe who I’m talking about.  Those who know Barbara know how special she was- a prideful Italian-American from the suburbs of Boston transplanted to the desert of Arizona, a  survivor of an entire childhood of child abuse who never let that abuse define her, a nurse-turned cop who loved the Constitution and victims advocacy.  Barb lived nearly 40 years of her life with a condition misdiagnosed as Crohn’s disease and Raynaud’s phenomenon before finding she had an extremely rare and fatal condition called systemic scleroderma, outliving her initial prognosis by 8 years. She was a horse lover who lived every day as if it were her last.  So many times in life, we are told about special individuals- Barb truly was a special woman with strong opinions and a personality that was as fiery and diverse as you could get- and I was lucky enough to call her Mom.

Back to the story…

Valentine’s Day fell on a Sunday in 2016.  I will always remember it because my sons had just finished playing in a baseball tournament, and that Sunday they had played in three games. I had texted my Mom to wish her a happy Valentines Day, and on the way home from the tournament, she asked me if I would like to come up to her house.  Looking back, I am so happy that we were able to spend some time together that day.

With my boys going to my ex-wife’s for the night, it afforded me some time to spend some time, just my mom and I. Over the preceding weeks, we had spent a fairly good amount of time together.  She had started in-home hospice a little over a month earlier, and with my dad needing to focus on work, I tried to alleviate some of the pressures on him by helping with logistics. My parents live off the beaten path, and there were some issues making sure nurses could get up to the house initially, as well as some final doctors appointments.  Still, there was something about that Valentine’s Day that was different.  For one afternoon, there were no distractions.  No rushing, or coordinating with people to make sure nurses were coming up to help her. It was just her and I spending time together.

When I got to the house, my dad was busy doing his normal weekend work around the yard (anyone who has been there knows the work seems endless!)  While he was outside, my mom and I sat in their living room, catching up about the boys weekend, school- the usual stuff moms are worried about. Looking back, it was nice to get her caught up on everything that had been going on. Then, the tone of the conversation changed:

“Joey, honey, do you think you could take me for a walk?”

I was a little hesitant because, although it was sunny, it wasn’t exactly warm and my mom would normally have to be bundled up just for a trip to the car.  But it seemed like she really wanted to do it, so I agreed.  We got her hands and body all bundled up, moved her into her wheelchair, and started a slow walk out the door and down the driveway.

I have a few memories that really stuck out from that walk.  She spent much of it telling me how to navigate the sand/dirt road- she was a horrible backseat driver. 🙂 But I remember her needing it- she kept saying how great it felt to feel the sun and the fresh air.  We got to the end of the driveway, and I asked her if I should turn around.  Incredulously, Mom told me that she was fine, and that we should keep going. I made a slow, wide left turn onto Old Paint Trail, and we started making our way up the slow grade towards Barb’s Trail.

She brought up baseball again- and how she wished she could go to one of the boys games.  I told her that there would be other tournaments and we would make sure that we got her to their next game.  This would be especially hard.  Between the temperature outside, the condition of her heart, her fingers, pain management and the logistics of needing to be catheterized throughout the day, I realized that the chances of her making it were slim, but we remained hopeful.

At this point, we were a good ways up the road, and admittedly, my pace had increased; it was actually difficult to walk at the pace we were walking.  My mind was focused on our conversation, and I found myself having to remind myself to slow down.  I asked her if we should turn around- but again, she said no.

She talked to me about going back to school, and asked me to promise her again that I would go back to get my degree.  Typical Mom conversation- but her tone was different.  I understood how important it was to her (and me, for that matter), and I ensured her that it was on my radar.  Mom was always my number one fan- no one believed in me more than she did. She reminded me that she got her degree when I was the boys age, and it would be a good example to the boys to show them the importance of going to college.

About halfway up Old Paint Trail, I was beginning to get nervous.  Sure, she had the energy to get this far, but I suddenly realized that the farther our trip up the road went meant that we extended our halfway point on our walk. We still had to walk back!  When I explained this to Mom, she agreed, and said she was starting to get tired.  I turned around and started the gradual decent back down the hill.

The next part of our conversation is what I’ll remember most vividly:

“Joey, I have to tell you something.  I don’t have much time left, honey.”

While the Boston accent was still there and the loving way that she spoke was still present, the tone in her voice was different. Normally, the way she spoke would tell me that she was looking for encouragement.   This time, I couldn’t give her my normal response- that she would be okay and push through it just like she always does. I would normally joke with her or say something to lighten the mood. This time, she spoke with absolute certainty. This was not a time for jokes.

Just six weeks earlier, we had talked about her passing away- about going into hospice and what that meant. Mom was so concerned that we would view it as her giving up, and agreed to hospice only on the condition that they would leave once she got better.  She was always fighting! All of us- my dad, sister and I, assured her that she had been through so much, and that we would never look at it as giving up- ever. It took us a while to convince her that we were all on the same page.  Reluctantly, she accepted what we told her, but you could tell that the stubborn, strong willed survivor she was wasn’t willing to give in yet.

I reminded her of the conversation we had about going out on her terms, that I would have stopped fighting years ago and the bravery she showed everyone was an inspiration to those who knew her.  For the first time, we spoke about her passing away in very real, sobering terms. She was worried- about my Dad, my sister Jenn, me and my boys.  I assured her that we loved her and while we would miss her terribly, everyone would be okay and she would never be forgotten.

Mom needed to hear that.  She needed to know that we were going to take care of one another- that we would not just be okay, but continue to live our lives to the fullest.  Thankfully, she was sitting in a wheelchair in front of me as my eyes welled with tears.  She needed those around her to assure her that the journey she was about to take was okay- now was not the time for crying. We shared how much we loved one another, and I told her how proud I was of her.  As we made our way to the driveway, the conversation turned to a peaceful silence for a few moments.  Then the backseat driver came back- instructing me which route to take back to the house. 🙂

The most beautiful thing about my Mom is the level of consciousness with which she always lived her life.  She not only knew her life was coming to an end, but she was conscious enough to communicate with her friends and family that the time was near. For reasons they may or may not be able to control, some people aren’t fortunate enough to say goodbye, and spend time embracing the painful, yet beautiful moments when one passes away. Yet my Mom afforded us the privilege of those moments- and although at times they were incredibly difficult, I wouldn’t trade the ensuing days for anything.

Two days later, on Tuesday, February 16th, my dad called me and told me that Mom had asked me to come to the house.  When I arrived, my mother was unconscious, and we were certain she would not wake up.  However, she was a survivor, and her transition to passing away was just beginning.