Keep The Memory, Not The Stuff

Tonight is a particularly difficult one.  I can’t seem to stop crying – really crying.  Although I often shed tears over the situation with Gram, I don’t often sob.  Tonight I’m sobbing.

Every memory of Christmas that I have – from my earliest to last year - has involved Gram in some way.  Whether it was her dressing up as Santa when we were kids and handing out gifts or her cooking her amazing Christmas turkey dinner, she’s always been there.  Cookie baking, tree hunting, decorating, (the dreaded) Christmas shopping, going the Christmas Eve service at St. Catherine’s to listen to the guy play the guitar that she always liked so much, are just some of the Christmas memories I have.    

I went to the basement today to bring out my Christmas decorations for my own tree (that I finally bought).  As I was pulling boxes off the shelves in the storage area next to my laundry room, I noticed 4 other boxes on the bottom shelf.  I have known these boxes were there and for the last 5 years, I have seen them in passing, but would quickly go about my business, not wanting to deal with them.  I had no recollection what was in them – probably blocked out of my memory by choice.  Those boxes have always been something I’d deal with “someday.”

That someday became today as I decided to open those boxes.  I opened them delicately, as if I had never seen them before and tentatively, knowing how it was likely to affect me.  In them I found all sorts of things from Gram’s house wrapped in newspaper and packed in the exact order of how I frantically proceeded through the house room by room as I packed back then.  I moved frantically then because I knew if I slowed enough to think about the magnitude of what I was doing, I would have broken down emotionally and not been able to complete the task at hand.  Each box that I looked in today was packed from a specific room and area.  And I remembered exactly where every item was back then when I picked it up to pack it.  For example, one box contained items from a specific section of Gram’s kitchen counter - candy dish, can opener, etc.  As I unwrapped each item, I pictured, in my memory, what things looked like back then and for years before.  The memories came flooding back - 42 years of memories of Gram and her house and all of the holidays, birthdays, picnics, Steeler Sundays, or just quiet evenings that I spent there.  Most of my life was spent at that house!  At that moment, I realized the magnitude of what happened 5 years ago.

And so I sobbed.  Then I went to visit Gram.  She was asleep, but I just sat quietly with her.  I get strength from her; I always have – just being in her presence.  How ironic it is that the strength I get from her helps me to deal with her own circumstances.  I returned home and sobbed again.  I sobbed through a whole bag of Hershey’s Kisses.

Tonight I am left with the knowledge that I can’t hold on to things – that memories are not attached to the items in those boxes.  Rather, my memories of Gram and my relationship with her go far beyond any “stuff.”  As difficult as it is, I know that I will need to let go of the “stuff.”  I will, however, always hang on to the memories.

Chubbs

“Sometimes they’re mean toward those that they’re closest to,” Judy, the nurse from Hope Hospice, said on the other end of the phone, as I told her how mean Chubbs was being toward Gram (his mom) and Jude (his wife).  “He’s trying to push them away in some attempt to minimize their pain of losing him.”   Although that may have explained things, it was still hard to watch – sometimes he was downright nasty toward them.  It was, naturally, a really tough time for the whole family, especially Gram.  By early December, we were talking to Judy at least once a day.  Chubbs was a tough customer and there was drama:  Chubbs didn’t want to accept any of the equipment they wanted to send to the house – wheelchair, hospital bed, etc.  It was his own way of denying what was happening to him.  Who could blame him?  Even today, I can’t begin to understand the magnitude of receiving the news that you’re dying in just a few months.  Who can grasp that?  Gram didn't show it, but I know she was devastated.

Twelve years ago today, December 15, 2002, Gram lost her only son, Burnett Berberich, to Pancreatic Cancer.  (Gram called him Chubbs, Chubby, Snoop or Snoopy.)  He was diagnosed on August 6 of that year.  He lived only a little over 4 months.  Sadly, his was the type of cancer that had no real options or treatment.  I was at the cancer specialist with Chubbs and Jude when he was given his prognosis.  Chubbs sat on the edge of the exam table in the exam room and Jude and I stood on either side.  The doctor came in and put the film up on the light board and then immediately pulled it back down with one hand and turned around.  He was face to face and eye level with Chubbs.  “I’m sorry,” he said, almost emotionless.  “I suggest you get your affairs in order.  You have about 4 months.”  I remember my heart sinking in that moment as I held back tears and noticed the combined look of disbelief and devastation on Chubbs’ face.  We had previously been told it was Pancreatic Cancer, but this was the first time we knew what to expect.  The doctor went on to describe how painful the disease is and how some people had lived as much as a year or two, but their tumors were in the upper end of the Pancreas.  He then went on to say that even when some patients are treated by surgery – the Whipple Procedure- the tumors ALWAYS came back.  There was no cure and no real longevity.  When the doctor finished, Chubbs’ responded the way that those of us who knew him would have expected him to respond:  “You mean I won’t make it to next May so I can collect Social Security?”  “No,” the doctor said.  Chubbs would have been 65 the following May.  He had retired at 62 – early.  He had finally had enough of the buyouts, mergers and constant changes at the cement plant where he had worked for many years.  Chubbs, who was always known for being cheap and saving all of his money for retirement, sadly enough, only got to enjoy about a year and a half of his long-awaited retirement.    

Although Gram maintained her tough exterior throughout the process, I know that losing the son she loved so much was devastating for her.  In fact, in hindsight, I wonder if Gram was really able to truly grasp what was happening.  She was never one for showing emotions so it was hard to tell.  I rarely saw Gram shed a tear.  I remember only two occasions:  when Pap died and when Chubbs was dying.  In both cases, the episode was very brief and controlled and she never sobbed.  The fact that his disease progressed and took his life so quickly was traumatic and difficult for all of us to grasp.  After it was over, it felt like our heads were spinning to try to catch up with all of the events and emotions of the previous four months.  For Gram, I often wonder if the trauma of losing Chubbs could have even triggered her dementia.  It seems unlikely, but one never knows.  It was shortly after his death that she began to exhibit symptoms.

Gram tried hard to keep Chubbs eating while he was sick.  It was very hard for all of us to watch – a big, strong, muscular guy, who always enjoyed eating – whither into someone who struggled to eat a tablespoon of mashed potatoes.  She tried making all of his favorite meals in hopes that he’d eat.  Sometimes he would.  Most times he couldn’t, especially near the end.  She didn’t quit, she remained steadfastly devoted and persistent. 

It was Friday afternoon, December 13, when things took a turn for the worse.  Chubbs had been filling up with fluid a lot.  He went to the hospital weekly to get “drained.”  Thursday, the day before, he had been drained and that night, Jude made a spaghetti dinner.  I ate with them that night, as I often did, and Chubbs actually ate well - for him, anyway.  He commented that it was because he was drained and didn’t feel as bloated.  “That was the best meal I’ve had in a long time,” he remarked with a big grin after he finished.  That made Jude (and me) happy.  Little did we know it would be his last meal. 

Late in the morning on that Friday Jude called me at work and said that Chubbs couldn’t get off of the toilet.  I told her I’d come and I hung up the phone and went to tell my boss I had to go.  When I arrived at Jude’s house, Chubbs was in the recliner.  Jude explained that a guy came to deliver hospice supplies and she asked him to help and he did.  However, things went downhill from that point.  Chubbs became more restless as the evening went on.  He also began to have pain. (Uncharacteristic of those with Pancreatic Cancer, he had not previously had much pain.)  Judy, our hospice nurse, told us to begin administering the Morphine that she had placed in the refrigerator on her first visit, knowing that we'd need it later.  They were oral syringes, so Jude and I began the ritual of taking turns administering it in Chubbs’ mouth every 1 ½- 2 hours.

All evening, Chubbs was on some mission it seemed.  He would not sit still.  No matter where he was, he wanted to be somewhere else.  When he was in the kitchen, he wanted to be in bedroom; from there he wanted in the living room, then the kitchen again.  Around and around we went -me helping him out of the wheelchair and walking him to his destination each time.  I struggled, too, because at this point he had quickly filled up with fluid again so he was heavy and awkward.  But I persisted as did he.  This went on for hours.  Late Friday night, he finally sat down in the big brown leather recliner that he had bought a week or so before just for dying and he calmed down.  The Morphine began to take effect.  We had been in touch all evening with Judy.  “He’s running,” she said.  “What?” I replied.  “He’s running from death.  He’s scared and he hasn’t accepted it.”  “Oh,” I said, surprised, but also thinking she was right.  When he finally sat down, I guess he had found some acceptance.   

Chubbs wanted to die at home.  While he was sick, one of us was always sure to bring Gram over to visit and spend time with him.  While she was at home, Gram spent much of her time making meals that Chubbs liked.  She would bring those meals to Chubbs when she visited.  She wanted to be close to her Chubby.

Gram was there Saturday, the next day.  Early in the day, Chubbs was in and out of consciousness.  During the day, the “death rattle” started and we knew time was running out.  We all sat in the living room wondering when he would take his last breath.  Gram would occasionally leave out her characteristic deep sigh – the one during which she typically whispered an “oh shit,” thinking no one heard.  We sat and we talked and we waited and we wondered.   Gram, Jude, Mom, my sisters -Michelle, Tara, and Heather- all of us.  We were tired.  We were scared.  We waited.  And if anyone left the room, they’d come rushing back in as soon as there was any type of noise from Chubbs.  We continued the Morphine ritual.

At one point, I saw some tears in Gram’s eyes.  Without calling attention to them, I said to her, “Mum, come over here and sit with him and tell him you love him.”  I know that her doing that would be one of the most difficult things in her life.  Gram just didn't say the words “I love you” – not to anyone.  She would say, “Me too” if you said it to her.  That was the most you’d get.  But she did walk over and she sat down in a chair next to the recliner.  She held Chubbs’ hand and she bent her head down near his chest.  I heard her talking to him, but I couldn't hear words and intentionally didn't listen.  I didn't for one second want Gram to feel embarrassed for saying anything that she might have been saying.  It was too important.  I suspected she would need to reach back to this moment once Chubbs was gone and take solace in the fact that she said what she needed to.  After a few minutes, Gram stood up and said, in her strong way, “Well, there’s nothing else I can do here.”  She put her coat on and was ready to go home.  Mom took her home. 

By the end of Saturday, Chubbs was completely unconscious.  Sunday came and everyone was back in our respective seats.  Chubbs was still hanging on and we did the same ritual – we all sat there afraid to leave the room and waiting for the moment to come.  Hospice Judy called and was surprised that Chubbs was hanging on.  She suggested that we let him know that it was OK for him to go.  “Tell him,” she said, “Tell him that it is ok for him to go.”  We did.  She also suggested that we leave the room.  “The hearing is the last thing to go,” she said.  “Although he can’t respond, he can hear.  He doesn't want to die with everyone around – especially Michelle, Jude and his mom.”  Judy knew the bond that Chubbs and Michelle had.  It was that of a father and daughter.  She was his princess.  So we all left the room.  But as soon as Chubbs would groan, we’d all run back in.  This went on for hours.  As it got late and everyone got ready to leave, Michelle called out, “Good night, Chubbs.  We’ll see you tomorrow.”  Michelle, Mom, Heather and Gram left and got into their cars to go home.  Only Jude and I remained and as we stood in the dining room making our way outside to smoke a cigarette, I noticed something.  I turned to look at Chubbs and at that moment, I said softly, “Jude, look.  He’s taking his last breath.”  I don’t know how, but I just knew.  The family had barely pulled out of the driveway.  Hospice Judy was right.  He waited.

I saw something beautiful that night -a lightness; a relief came over Chubbs' body as he exhaled that last breath.  The pain and burden were gone.  It was as if I was watching him leave his wretched body.  I walked over and placed my hands over his eyes, said goodbye and closed them.  "Goodbye Chubbs.  Rest in peace."

Oh Christmas Tree – Gram Style

Some years ago, perhaps 10 or 11, before the onset of the Dementia (or perhaps it was even a result of the early onset), during a visit to Gram’s house, I noticed a big stack of boxes in her laundry room.  There, in the middle of the floor, stacked high, were the boxes containing her Christmas decorations and tree trimmings.  It was July, so I was obviously curious.  “What’s all this,” I asked.  “I’m throwing it all out!” she exclaimed.  “I’m cleaning things out and I don’t have room for that shit here.”  “Oh,” I said, thinking she’d never really throw the stuff away, because I had tried to help her throw other stuff away before and she would pull it back out of the garbage.  To my surprise, she did throw it all out – ornaments from years and years ago, lights- the big, round frosted ones that I always loved so much (and that you can’t buy anymore), the liquid lights that bubbled liquid while they were lit- all of it, gone.  I was surprised, disappointed and saddened.  My fondest childhood Christmas memories were those that involved Gram and there were always decorations and a beautiful tree with lots of presents under it.

Gram always cooked for Christmas Day and I spent the day there with her and Jude.  (When Chubbs, Gram’s son was alive, he too, would be there.)   As Christmas approached that year, I kept asking about a tree.  “No, I’m not getting a Goddamn tree.  Why do you think I threw out all that shit?  I’m not doing that anymore; I’m tired of it!”  “It’s Christmas,” I’d say.  “We need to do something.” 

At one point, unbeknownst to me, she had gone to Walmart and bought a 3-foot fiber optic tree on a little stand that rotated and gave off light through a prism.  The branches were very fine and coated with a white substance to mimic snow and as the base slowly spun, the fiber optic strands lit up in beautiful colors.

 

One night when I was visiting, I brought up Christmas again.  “I can’t believe we’re not even going to have a tree for Christmas,” I lamented.  Making no comment, Gram marched into the laundry room and came out carrying a box.  She pulled the tree out of the box, plopped it down on the end table that was next to the sofa, and said, “Now there, there’s your Goddamn tree!” 

And so it’s been every year since then.  Each year as I pull the tree out to take it to Manor Care, I can’t help but to smile as I remember that day.  

Bad Feeling

It is not the first time I have had this feeling – a bad feeling – like the end is near.  This disease is such an emotional roller coaster.  Gram goes through phases; she’s down for a few days, then back up and about and crazy.  She stops eating for a while, and then just as quickly as she stopped, she starts eating again.  One never knows at this point.  Her hospice record – being placed on and discharged twice – demonstrates this idea well.  I look at each visit as potentially the last.

She slept all day they told me when I called earlier to see if she was awake, in the hopes of bringing her a fried chicken dinner.  “She is not,” the person on the other end of the phone said.  “And she will not wake up.”   When I subsequently arrived and went to her room, I pulled back the blankets to see if she needed her diaper changed.  She opened her eyes and kept them open for a while.  But she was despondent and distant.  Her eyes looked at me and beyond me at the same time – as if she saw something else.  I talked to her and she just stared at me.  I turned the TV on and she just stared at that.  Her facial expression was blank- vacant.  I sat with her for a while, her eyes jetting back and forth between the TV and me, but as if not seeing either.  She dozed.  The room was so hot that I was down to my T-shirt by the time I left.  Gram, on the other hand, was covered in blankets.  There was an occasional deep sigh and groans, but no movement.  I hate seeing her like this.

I got up to leave and kissed her on her forehead as I always do.  “I’ll see you in the morning,” I said, as I always do.  She nodded and in a whisper voice, mumbled some words that I could not make out.  She closed her eyes once again.  As I walked out, I thought, God, I hope I don’t get a call tonight. 

Amazing Woman

 “Manor Care missed call & voicemail,” I saw as I picked up my phone to log my weight lifting results into the Crossfit App on my phone.  There was also a missed call and voicemail from Michelle.  My heart sank and my mind told me something serious happened if both the home and Michelle called me.  I ran into the bathroom at the gym to listen.  “Michael, this is Carol calling from Manor Care.  Your mother fell tonight and appears to have hit her head on her nightstand.  Please call me back as soon as possible.”  The message was different from the usual, she fell but she got right back up and kept going and we’re monitoring her and there’s nothing to worry about and call us back if you WANT to, message.  I didn’t even listen to Michelle’s message, which I later learned had nothing to do with Gram’s fall.  I called Manor Care back instead.  Carol told me that they found Gram lying on the floor in her room with a big gash on her forehead that was bleeding.  According to Carol, it looked like she hit the nightstand.   They had a call into Dr. Benz to see if he wanted to send her for a CT scan of her head.  “Ok,” I said.  “Call me back as soon as you hear from the doctor.  I’m on my way.”  I left the gym.

When Carol called me back to tell me that Dr. Benz did want to send her to Passavant for a scan, I was already on my way over.  “We’re calling the ambulance now,” Carol said.  “I can ride with her in the ambulance, right?” I asked.  I heard Carol turn from the phone and ask her colleagues.  “No, family members cannot,” I heard them say.  “No,” Carol said, repeating what they said, not knowing that I had heard the background conversation.  I could feel my frustration build; exasperated by my own fear and sadness, I’m sure.  This could be it, I thought as I drove.  At this point, anytime could be the last.  I was afraid of what I would find when I got there.  Was she in pain? I wondered.  Even though, she doesn’t seem to feel pain and rarely complains of any, I hate to imagine her hurting.  She seems so helpless in her current state.  She needs me there to speak for her; to take care of her, I thought.  I felt myself getting defensive.  My job is to protect Gram and ensure she’s safe and that she doesn’t get scared and freak out.  I take that very seriously.  It’s what she did for me as a kid.  Therefore, I needed to be in that ambulance.  Furthermore, I’m her Power of Attorney and make all of her medical decisions.  I always get frustrated when medical people insist on asking her a bunch of questions.  She can’t even understand them, let alone answer them.  I always feel like that’s humiliating to her and I want to protect her from that humiliation.  (I’m sure, in reality, the humiliation is my own projection of how I feel about it FOR her.  It’s unlikely Gram feels that way.)

When I walked in, Gram was sitting in the wheelchair in front of the nurse’s station, like she would any other day.  She was by all accounts, her normal self.  She was talking gibberish and her hands were flailing about as they do when she gets on a “rant.”  Several of the staff members were waiting for me when I arrived and they were all sincerely concerned about Gram.  It’s touching how so many of the staff members there love her.  And I know they do, because I observe how they interact with Gram.  What I see they couldn’t fake; no way.  “I hope she’s ok,” Carol said lovingly.  “Me, too,” “Me, too,” others echoed.  “She looks fine to me,” I say.  “She’s amazing!” I exclaim; “Amazing!”  “She sure is!”

There have been so many others over the years – at Elmcroft and Manor Care- that have fallen and within a couple weeks died.  They broke a hip or some other bone, suddenly got Pneumonia and died.  I was always surprised when I’d inquire about someone who I was accustomed to seeing around a lot and I’d find out they fell and subsequently passed, all within a couple weeks’ time.  Gram IS amazing.  She falls at least a couple times a month.  Most aren’t serious.  She falls on her ass or rolls out of the wheelchair.  In most cases, she gets up, mumbles some expletives, such as “Goddammit,” “Shit,” or “Son-of-a-bitch,” and she goes about her business. 

In fact, I’ve had conversations with Manor Care in the past about Gram’s safety in such matters.  They’ve tried putting her in a rocker wheelchair that prevents her from getting up.  She spun herself in circles trying to get out of it.  I couldn’t bear the thought of her tied down in any way.  I know Gram.  She would hate that.  Therefore, I offered to sign some sort of waiver – to absolve Manor Care of responsibility if Gram falls and dies as a result.  I know she’d rather take her chances- even if that meant falling and potentially dying – rather than be tied down.  That would be cramping her style and totally out of character for the person she always was and is.

Thank God for my sister, Michelle.  She, too, gives me strength.  I called her immediately as I was driving over to the home.  She calmly asked if I wanted her to meet me at the hospital.  “Yes.  Thank you.”  Michelle is always there when I need her.  She offers support and she is the voice of reason during those times that I get emotional and/or crazy.  I’m so grateful for her.

The ambulance ride was fine.  I expected Gram to be scared and therefore difficult in getting onto the stretcher and then into the wagon.  She was perfectly calm and cooperative.  In fact, her vitals were probably better than mine:  blood pressure 140/80, temperature 98.6.  There was an older man who drove the ambulance and a younger guy and girl who rode in the back with me.  When they first arrived to pick Gram up, I, being in my defensive stance, demanded, “Just so you know, I am her Power of Attorney.  I make all of her medical decisions because she can’t.  And I will be riding with her in the ambulance!”  I had to apologize later for acting like such an arrogant dick.  “It’s completely fine, the guy said, it’s good that you care so much.”  They, themselves, were amazed at Gram’s resilience for her age.  “So she was last in the hospital in September of 2011?” the young man asked.  “Yes,” I replied.  “That’s when she was supposed to die and was put here to do so.”  “Really?” he said, surprised.  “Yes, and that was over 3 years ago!” I exclaimed.”  He continued, “This is her first trip to the hospital since then.  That never happens to a nursing home patient, especially someone her age!”  “I know,” I said, “And she’s been on hospice twice and discharged, too.  She’s an amazing woman.”

When the doctor came into to examine Gram, I inquired about the purpose of this CT scan.  I learned that they were checking for bleeding in the brain as well as any additional injuries to the head or neck.  I further questioned the doctor because I was trying to understand what the treatment options would be.  He informed me that if there was bleeding, we could do two things.  First we could opt for surgery in which they would drill a hole in her skull and fix the source of the bleeding.  Secondly, we could do nothing.  He said that in some cases, nothing ever comes of it.  In other cases, the patient dies.  “Is it a painful way to die?” I asked.  “It can be,” he replied.  I told him that the surgery option would not happen for sure.  “Let’s just get the test done and go from there,” he said.  I agreed.  He put some type of “glue” on the gash on Gram’s forehead where she had the golf-ball sized lump and left the room.

We spend 3 hours in the ER.  Gram slept a little at first.  When she came back from the test, though, she was awake, talkative and raring to go.  Michelle and I had a nice conversation while waiting for the test results and occasionally Gram would interject her own conversation – mostly gibberish.  She was so pleasant.  Even though I was scared, I very much enjoyed spending the time with both of them.

The doctor came in to tell us that the results of the CT scan were fine; that there was no bleeding or injury to the head or neck.  The only abnormality was the significant brain shrinkage that is characteristic of Dementia.  A huge sigh of relief ensued.  Michelle and I asked if we could take Gram back in her car instead of waiting for a wheelchair van (which could take hours).  The doctor said we could as long as we felt we could handle getting her in and out of the car.  We did.  Gram was very impatient while we waited for Michelle to pull her car up to the entrance.  She was then hesitant to get into the car, until Michelle got in first.  I guess she felt it was ok then.

When we arrived back at Manor Care, I was touched to see a wheelchair in the lobby with a sign that said, For Gram Berberich, Michael. How kind of them to make sure to bring a wheelchair upstairs for us.  Of course, Michelle and I completely missed it at first and “stole” someone else’s wheelchair that was left at the door.  We’d use it just to get Gram downstairs then bring it back.  When we saw the one with the note, we got Gram up and plopped her down in that one and made our way.  

Downstairs, her “fan club” was waiting for her as we wheeled toward the nurse’s station – several nurses and aides, who were anxiously awaiting her return and so happy to see that she was ok.  Gram was ready for them, too.  She was looking for the “party.”  We surmised that she would probably be up most of the night.  She was.