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.

Carlisle's Friends

Below is a letter that I wrote to some of Gram's long-time work friends on November 21, 2010.

I hope this finds you well.  I wanted to take a few minutes to write to you about Betty Berberich – my grandmother; or Mum, as everyone always called her.  You were an important part of her life for so many years and I wanted to give an update on what’s been happening with her, since you’ve last had contact.

About 5 or 6 years ago, we began to notice that some things were changing for Mum.  Her memory began to fail her and there were occasions where she found herself not remembering being somewhere where she had been many times before.  Initially, we didn’t think much of it; we thought it was a natural part of the aging process.  After all, she was close to 90 years old.

            As time went by, she began to forget more things.  She also began accusing neighbors and family members of things – often things that didn’t even make sense.  She became paranoid and angry and her thinking became more and more irrational.  She refused any testing by her doctor at first.  In time, however, she agreed to some brain scans and they revealed significant shrinkage in her brain – Alzheimer’s.

            Her living alone became problematic when she began to do dangerous things like lock herself out of the house, catch coffee pots on fire, and cook the same meals over and over.  Although I was going there every night to check on her and make sure she ate and got her meds, it was not enough.  The day that she got herself into the bathtub and couldn’t get out for over 10 hours was the day that I decided that she needed 24 hour supervision.  I hired some aides to come and look after her when I or Judy (her daughter-in-law) couldn’t be there.  A little over a year ago, I bought a house in Shaler and moved her in with me.  This brought us closer to Judy who could come during the day and help out.  My mother often took her on weekends.   With Judy and Mom and the aids we were able to keep her safe and secure for about 7 months.  She continued to get worse though – she became incontinent and she became too much for the aides to handle in the shower and bathroom.  She also began to get very nasty and sometimes despondent.  Although I had spend a lot of time over the course of a year or so looking at assisted living facilities that might be an option, I just wasn’t ready to place her. 

            In March of 2010 after finally realizing that I was not longer the person who could give her what she needed and best care for her, I made the most difficult decision of my life: I placed her in a facility.  It was a very scary and difficult time for all of us.  I never for one second wanted Mum to feel like she was being abandoned or that no one cared.  We planned things out in such a way as to move some of her personal things into the facility first.  I hung several “familiar” pictures on her wall and tried to make her room as similar to her “home” as I could. 

            I thank God every day that the move went as well as it did.  She never once seemed to even notice she was in a different place and now, 8 months later, she has yet to ever express to me anything about being there.  The facility is close to me so I visit almost every day and the family also visits quite often.  Sometimes we take her out for dinner or bring her home for a visit.  She is thriving in the environment.  She’s become quite the little leader – always trying to round up other residents to plan an “escape”.  The staff loves her and they engage her constantly – whether it be with setting the tables or cleaning up after meals or helping with the snack cart.  She still loves to raise hell and she endearingly does so with the staff quite often.  They laugh and she laughs.  I never would have thought that she, of all people, would thrive in this environment. 

Mum’s memory and cognitive ability continue to decline.  She still recognizes most family members, but sometimes gets confused as to how they are related to her.  She often talks about people that are deceased as if they are living.  We’ve learned not to argue with her as it causes her distress.  We simply go along and change the subject if we need to. 

Her physical health is good.  She gets around very well.  She has some issues with clots in her legs and they swell and sometimes she get sores on them, but the doctor and nurses are able to treat that effectively.   The physical therapist says he’s never seen her do so well. 

Anyway, my intent in writing this letter was to simply let you know how Betty is doing; in case you’ve wondered over the last few years or if you may have tried to contact her and were unable to do so.   Through the years, she always talked very fondly of you.

Sincerely,

Michael Burroway

I Won't Leave You Mikey

When Gram was first placed at ManorCare on September 14, 2011, my family and I were convinced she was placed there to die.  She had just spent 3 weeks at UPMC Passavant in the ICU and was recovering from both a C-diff and a urinary tract infection.  She was in a bad way – lifeless, almost unconscious.  While she was in the hospital, I was called twice by her PCP and told she would not make it through the night.  “She’s more dead than alive,” her doctor told me once; “She’s made a decision to go,” she said another time.  “I’m sorry,” she said to a blubbering me who had to muster up every ounce of strength to maintain even a little bit of composure at work where I took the calls.  I failed, of course.  I spent a couple nights at the hospital, wondering when and how I would lose my Gram – the person that I was terrified of losing since I was a young child and first understood what death meant.  I had never been able to imagine my life without her.  I still can’t.

It was a tough night getting Gram settled in that night.  The bed in her room was an oversized model and it was broken.  It seemed the place was understaffed and we waited what seemed like forever to get a new bed. Aida, the nurse, was there that night, I remember.  Sandy, one of Gram’s favorite aides was, too.  With their help, we finally got her into a working bed and settled.  She slept.

The next night, September 15, the most amazing thing happened.  The following conversation took place and it struck me at the deepest place in my soul and it moved me such that I will take it to my own grave.  I’m also so happy that it took place.

It was just the 2 of us in her room, which was lit with only the light above her bed.  It was very quiet and I was attempting to feed her dinner.  She was very weak and barely awake, but for the first time in a long time, she was completely coherent.  (Most of my life, I called her "Mum" as did most people. "Gram" came about more recently.)

Gram (moaning):  “I have a lot of things wrong with me, Mike.  I don’t want to live anymore.  I wish I was dead.”

Me (after a pause and mustering up strength):  “Well, you know, Mum, its ok if you want to die.  You don’t have to keep living.”

Gram:  “I won’t leave you Mikey.”

Me (sobbing and trying to hide it from her):  “Its ok. I’m ok.  I’ll be okay.  I’ll take care of everything. You don’t have to worry about me...or anything.”

Gram (after a little pause):  “So, I don’t have to worry about dying?”

Me:  “No, Mum, you don’t have it worry about dying.  It’s ok.  Everything will be ok.”

Me:  “You know I love you, right?”

Gram:  “Yeah, me too.”

Gram (sighing):  “Ok, Mike.”  (Pause)  “Night, Mike.”

Me (kissing her forehead):  “Good Night, Mum.  I love you.”

Gram: “I love you too, Mike.”

She peacefully went back to sleep.   I sat quietly with her for a while before I left.  I expected her to die that night.  I couldn’t sleep at all as I kept waiting for the call.  She didn’t.

Gram really needed to have that conversation that night.   I know that.  She needed to know that I would be ok.  It was always important for her to take care of me and make sure I was ok.  She did that night.

Teddy

I picked Teddy up from the groomer yesterday afternoon and as I’ve done the last couple times, I took him over to visit his “Mommy.”  Gram was asleep again, though; in bed.  I woke her and said, “Teddy’s here."  “That’s not Teddy,” she snapped, her eyes barely open and her head barely cocked to the side enough to even look down and see him.  She turned her head back and went immediately to sleep.  Stefanie came in Gram’s room to meet Teddy.   She hadn’t met him before, but heard a lot about him.  She laughed as she told me that every time Gram sees a dog, she calls it Teddy.  Meanwhile, today I bring Teddy and she tells me it’s not him.  Go figure.

I remembered the day we sat in the attorney’s office.  I laughed as Gram told the attorney that Teddy should be written into the Will to go to me.  With her devilish grin, she turned to me and winked.  I smirked, “That’s fine with me.  You will WAY outlive him anyway.”  Of course, the idea of a nursing home NEVER occurred to me at that time.  Who would have known!  Needless to say, I have Teddy.  I’ve had him for the last 5 years.  Prior to Gram going to ManorCare, she was at Elmcroft assisted living for a year and a half.  Prior to that, she lived with me for about 8 months.  When I moved her in with me 5 years ago, Teddy, of course, came long. 

When I remember back to that day at the attorney's office, I think Gram probably knew something was going on with her.  One day, out of the blue, she surprised me by asking me to take her to have her Will done.  She also wanted to pre-pay her funeral and buy her headstone.  I was surprised because I had asked her about having a Will done in the past and she just seemed to bypass or change the subject.  She had a seriousness and determination about her this time.  I agreed to take her.  It was probably 10 years ago.   At that time, none of us knew the extent of her disease or where it would take us.  She had memory lapses, yes, but she was in her 80’s after all and they seemed very “normal.”  She still had command of her cognitive facilities.   

In hindsight, though, Gram did me a huge favor.  In one day, we had her Will, Living Will and Power of Attorney documents drawn up.  We visited the funeral home and prepaid her funeral.  (Gram had cashed in her life insurance policies some years before.)  She also selected and purchased her grave marker.  She didn’t need cemetery plots.  She had purchased 4 of them back in the 1950’s at Mt. Royal Cemetery.  Gram made me her financial Power of Attorney.  She also made me and Tara, my youngest sister, her medical POA.  I remember saying, “Make it Tara.  If we ever got to the point to make any serious medical decisions, I’ll be too much of a mess.”  Funny how life gives you what you need as you go along.  I’ve had to make certain medical decisions for Gram along the way.  I’m sure there will be more.  I’m not a mess.  In fact, I’m very strong and capable.  I know what’s best for her.  Ultimately, when the time comes and Gram decides to call it quits (and I DO believe she’ll decide when she’s had enough), I only have to make a few phone calls and everything will be taken care of.  I’m grateful she did this for me. It was always important to Gram that she take care of me.  Her doing this was not a coincidence.

Back to Teddy:  Teddy, a 75-pound black Lab and Chow mix is Gram’s last baby.  She got him when he was 3 months old; a shelter dog.  Because he would be a big dog and Gram hadn't had a big dog in years (her last dog, Bobo, was a Poodle Bichon mix and lived to be 16), I built a 5 foot chain link fence around a portion of her back yard.  That way, she could just let him out the back door.  Jude, my aunt, helped me with the fence, since it was February and cold and she felt bad.  Gram, though, being Gram, often still insisted on trying to put a leash on Teddy and walk him outside the fence.  "Go ahead," I'd say, "If he sees a rabbit or something, he's going to rip your arm right off your shoulder."  Deaf ears.  Teddy, however, is amazingly gentle and doesn’t have a mean bone in his body.

Teddy went through obedience training.  It was required when we got him from the Western Pa Humane Society.  They taught him things such as heel, stay, sit, down, etc. – all things that are important for the dog’s safety.  Gram wouldn’t participate or work with him during the sessions; she had me do it.  She was content to wait until we got home and teach him her own non-essential tricks, such as “speak” and “bark his age.”  She confused him.  To this day, I still laugh when I say, “Teddy sit” and he “speaks.”  And he keeps “speaking.”   

Gram loved Teddy and he loved her back.  Their relationship was touching to watch; symbiotic in fact.  Teddy was devoted to Gram and took his “job” of caregiver very seriously.  He was gentle with her.  He slept on the bed with her but was always cautious when she moved.  As soon as she stirred, he’d get up, move himself until she got settled back in, and then gingerly lie back down.  If he moved, he was careful not to scratch her or hurt her.  If she was in the chair, Teddy would lie by her feet.  When she ate, his head was on her lap (begging of course). 

Teddy frustrated Gram sometimes, though.  Gram always loved dogs with insatiable appetites.  She loved to feed them, whether it be their own food, leftovers, special treats she bought – whatever.  She always loved dogs that loved to eat.  She’d sneak and feed them from the table (then deny it when she was busted).  Teddy, to her dismay, though, was not a big eater.  This drove Gram nuts.  At times, she’d put his food down and he’d walk away or he’d eat just a little and walk away.  Gram would then yell at him to eat.  Sometimes she’d pick up his bowl and chase him with it, screaming, “Eat it, Goddamn you, eat it!”  Teddy, unknowing, would look at her and slowly turn and walk away, adding fuel to the fire.  Let me be clear, Gram was not abusive to her dogs – or any animal for that matter.  She could however, scream and chase with the best of them.  When Teddy first came to live with me, I couldn’t seem to get him to eat.  I soon realized that until I yelled at him, he wouldn’t eat.  Over time, thankfully, he has gotten over this.

But the disease has taken a toll on Teddy, too.  Until things started to get bad and I began spending more time at Gram’s house, I didn’t really know what was going on there.  It was just her and Teddy.  But what I learned was that Gram got her nights and days mixed up and often would sleep all day.  When she went to bed, she’d take Teddy upstairs and close the door.  The door was such that it had to be pulled to be opened to get back downstairs.  Teddy had somehow learned to open that door upstairs and let himself down to get to the water that was in the dish in the kitchen. 

I noticed, also, when I took Gram grocery shopping, that she was always buying bacon and eggs.  I kept checking the refrigerator because I couldn’t imagine how someone could go through bacon and eggs like she did.  One day, I walked in and saw a whole bunch of bacon and a couple of cooked eggs in Teddy’s dish.  Then it hit me – she was cooking for Teddy!  As her disease progressed, Teddy took on almost a human quality to Gram and I often heard her referring to him as if he was a person.  She “cooked for him” like she did for my grandfather when he was alive.  I also learned that bacon and eggs was one of the few things that Gram could still remember how to make at that time.  So she made it over and over again.  Teddy, the beneficiary, ate a lot of bacon and eggs.

Teddy and I left last night, having not been able wake or interact with Gram.  We’ll try again next time.

Sawing Logs

I arrived late last night for my visit with Gram.  It was around 8:45pm. It was dim and eerily quiet in the place as I walked down the hall toward Gram’s room, looking around for her as I always do.  I never know where I’ll find her when I arrive - in someone’s room, on the other side of the floor (Long Term Care section), behind the nurses’ station or in the lunch room asleep in her wheelchair.

The Gay One was walking out of someone’s room as I walked by, maybe his own.  I don’t know.  It was the first time I saw him standing.  He startled me with his tallness and his abrupt appearance in the doorway to the hall.  “Hello,” he said, as if he himself seemed caught off guard.  He and the Hot One were the only two up and about. 

The Hot One, like the Gay One, is a younger guy, 50’s probably; handsome.  The Gay One is loud and talkative and clearly demented.  But until tonight, I thought the Hot One was only here for some type of rehab.  He’s very quiet, so it’s been more difficult to determine.  Tonight, though, I noticed the ankle bracelet on his leg.  It’s the tell-tale sign of a dementia patient, the Scarlet Letter of the disease.  Anyone who has memory issues has to wear the electronic sensor so that if they try to escape out of any of the doors, it sets off a piercing and loud alarm throughout the entire facility.  “House arrest” we call it.  Gram wears the sensor.  Luckily too, because, of course, she has set off the alarm on several occasions trying to escape through various doors on the floor.  I was saddened to learn that the Hot Guy also has the disease.  It’s so tragic.  I hate this disease.

Surprisingly, I found Gram in bed.  She’s a night owl so it’s not unusual to find her wide awake and busy at 9pm.  Tonight, however, she was asleep – “sawing logs,” as she would say – mouth wide open and snoring, surrounded by stuffed animals that where clearly placed there by the staff.  I took a photo of her with my phone to post to Facebook, but when I looked at the photo, I decided not to.  When she sleeps like this, with her mouth wide open and so small against the bed, she looks dead.  With the room being dark, it was even worse.  I quietly put the laundry away, gathered up the dirty clothes and proceeded out.

As I walked down the hall, the Gay One, now in a wheelchair, called out to me, “Father, Father!”  He was visibly confused and highly agitated.  He didn’t wait for me to respond; he frantically kept quickly wheeling by.  The Hot One was in his wheelchair, oddly turned toward a corner, awake, but just staring at the wall.  I hate this disease.

The tall and stocky, middle-aged nurse with glasses, whose name I don’t know, said, as I walked toward the elevator to leave, “She sleeping?”  “Yes,” I replied, “I didn’t want to wake her, so I just got the laundry.”  “She was cantankerous earlier; she must have tired herself out!”  I laughed and it reminded me of the old days.  When Gram lived at home, she would tire herself out all the time.  She would go and go and go -all day, starting several projects - inside, outside, wherever.  Then she’d cook dinner and clean up afterward.  She would completely exhaust herself.  “Now I’m gonna sit down and watch my show,” she’d say with a sigh as she plopped down on the puffy chair in front of the TV.  Within 5 minutes, the snoring would start.  I’d look over and her head would be back, mouth wide open.  Sawing logs.  

Randomness

“That’s Gramma’s grandson,” I hear as I walk past the two guys sitting in front of the nurse’s station as I leave tonight.  It was the gay one that said it.  Demented.  The guy he was next to was a rather handsome guy, probably there for some type of physical rehabilitation.  He didn’t seem demented.  I laugh to myself, of course, the gay one is next to the good looking one. 

I’m touched that so many people know who I am at ManorCare.  It’s because of Gram.  For the first couple of years she was there, random people would approach me and say, “You must be Mikey.”  “Yes.”  “Gram talks about you all the time.”  Gram is the only person that calls me Mikey – and the only person I let call me Mikey.  At that earlier time, Gram was able to make sentences better and hold conversations so she talked about me so much that people just knew me – staff, visitors and other patients alike.  It always made me smile when someone would approach me.  I knew Gram was talking about me again.  I also know that it wasn’t always good.  And that also made me smile. 

My mind wanders as I walk down the long hall toward the elevator and think about the gay one: 

Where DO old and/or demented gay people go?  You don’t see them in nursing homes or assisted living – at least I haven’t.  Maybe they hide themselves well.  Maybe their generation was better at “fitting in” and not being “obvious” – OUT as we say.  Maybe they all become sugar daddies and find young guys to take care of them so they can die in their own homes.  Who knows?  I know where one is tonight.

It’s actually tragic – this gay one who is so friendly.  He’s young – probably not much older than me – mid 50’s maybe.  I don’t know his story, but he is clearly demented.  Is it Alzheimer’s or some other form of dementia?  I don’t know.  It’s simply tragic.

As I slowly proceed to my truck and drive home, my mind takes me back and I remember two other tragedies:  

“Hello, come here!  Come here! Come Here! Hello?” Ernie would say as he lie in the hospital bed next to my grandfather’s at St. Francis hospital.  As I walked behind the curtain to his side of the room and stood at the base of his bed, he would sit up in bed, “Ptui! Ptui!”  Yes, with all the power of his upper body slinging forward, he would spit at me.  Actually, he would spit at anyone he could get to step to his side behind the curtain.  Either that or he would pull back his sheet and expose himself.  “Fuck, fuck, fuck.”  He seemed to get a real kick out of the shock factor of his behavior, like a kid who was just told NOT to do something, but wanted to push the envelope and of course, do it anyway.   It was funny, but sad.  It was pathetic.  Ernie was another tragedy – an example of what Alzheimer’s can do to a young man – a professional.   The disease doesn’t discriminate.  At that time, Ernie was in his 50’s and an orthopedic doctor.  But most of the time his brain was mush and his behavior – well, crazy.  I remember once, he was completely lucid.  Gram was having an issue with her leg.  He had her sit down and examined her.  He mumbled a few medical terms and told her what he thought was wrong – totally normal.  This disease is a roller coaster; one of extremes and contradictions. 

There was another, too.  I forget his name; also young, probably late 50’s and another St. Francis roommate of Pap’s.  (Pap spent a lot of time in St. Francis hospital.  I often took Gram to visit or picked her up, so I spent a lot of time there too.)  This guy was very late stage Alzheimer’s.  He didn’t talk; he made noises.  He squirmed in bed.  He had a tracheal intubation and his hands were usually strapped down so he couldn’t pull out the tube.  One particular night, he was frantically squirming in his bed, shaking his head back and forth.   It was enough to make me look over behind the curtain and notice.  He wasn’t strapped down; his tube was out of his throat.  I was young and I guess I thought it was intentional – that maybe for tonight he could remove and re-insert the tube as needed.  I don’t know, but I didn’t say anything to anyone.  It wasn’t long before some nurses came in rolled the guy out on a gurney, sheet over his head.  Dead.  Tragic.  I should have told the nurse when I saw the tube out.  I killed this guy.

Gram was in bed tonight when I arrived.  Lying on her left side and raised up on her left elbow staring at the TV as if it was some foreign object she’d never seen before.  CSI: Something or Someplace was blaring.  Her room was dim, only the TV lighting it.  She squints as I walk in, “Who’s that?” Pause.  “Oh, Mikey!  What were you doing?”  “Nothing,” I reply.  She turns back to the TV.  Captivated by it, she speaks random words and phrases and occasionally points to it. 

She’s holding a stuffed Ape and a stuffed Dragon.  She undoubtedly pilfered them from someone else’s room.  She’s famous for wandering into other peoples’ rooms and taking things, even wheelchairs!  She strokes and pets the ape.  “I like this,” she says over and over.  Then suddenly, “Don’t do it or I’ll smack your ass!  You’re a bad boy!”  She picks up the ape extends her hands out as it hangs from her grip.  Then back in front of her, she caresses it gently, “I like this.”  “He’s cute.”

Stefanie and Gary, two more of my favorite aides, stop in.  “We’re going to come in soon and get you up, ok?”  It’s 8:30 at night, but they both smile and acknowledge that she is wide awake and will be getting up anyway, so they might as well do it for her.  I laugh.  Gram mumbles some sounds toward them and laughs her devilish laugh.  “We’ll be back in a little while,” Stefanie says as she walks out of the room.    “She’s nuts!” Gram retorts, looking at me and gesturing disgust with her hands by flinging them out in front of her.  Immediately she turns and starts obsessing over the sheets on her bed.  She straightens them and she slides her hand across them as one would do to get the wrinkles out.  She’s focused on fussing with the sheets.  It’s a remnant of her past; of her 40 years of pressing bridal gowns for Carlisle’s Bridal shop.  “Donna Lee would like this,” she mumbles.  Donna Lee is my Mom, her daughter.  Gram talks about Donna Lee a lot, too.  She refers to lots of people as Donna Lee, especially my sister Michelle. 

Her attention goes back to the TV.  She’s enthralled by it. 

Aida walks with a glass of orange juice.  Aida is the night nurse.  She was there the night Gram arrived three years ago.  I didn’t much like her at first, she seemed cold and uncaring.  I’ve since learned that she’s actually the opposite.   Aida has endured her own pain; the pain of losing a son.  I understand her much better now.

Aida hands the glass of Juice to Gram.  Aida and I know it contains Gram’s meds.  Gram, as always, is suspicious of it.  “What is it,” she asks, with a look of distrust and suspicion toward Aida.  “It’s juice,” Aida says and I reiterate.  Gram reluctantly takes the glass.  As Aida leaves the room, Gram turns to me and slowly raises the glass to her mouth, smelling it suspiciously.  “It’s juice,” I say, “Just drink it.”   She does.

Gram has always been suspicious when given her meds.  I was always the one who could get her to take them.  She trusted me.  Early on, the staff would even call me and have me talk to Gram on the phone so she would take her them.

Gram goes back to the TV and the sheets.  She’s now holding the ape inside her arms.   I kiss her good night.  I tell her I love her.  “Where you going?” she asks.  “I’m going to work.”  Ever since Gram has been in a facility, the easiest way for me to leave and for her not to get upset, is for me to say I’m going to work.  She always understood that so she would accept it.  It’s a lie, but I've learned, with this disease, that sometimes lies can prevent a lot pain and turmoil.   "I’ll see you when I get home.  I love you.”  “Ok.”

“Get The Pie Out Ella!”

I arrived today to find Gram asleep, sitting in the wheelchair at a table in the lunch room.  Lunch was being served, so I tried to wake her to eat.  I called her name.  I shook her.  Nothing.  “She must have pulled another all-nighter,” I say, smiling, to the aide serving lunch.  She does that.  She’s nocturnal these days. 

The aid serving lunch said, “Don’t worry, she’ll wake up for me, she always does.  I have a loud voice.”  I said, “Ok.”  She came over and as she got right in Gram’s face, yelled, “Gram!”  Pop, the eyes opened.  Gram mumbled a few not-so-nice words in the aide’s direction, looked down at me (I was now kneeling on the floor beside her wheelchair) and mumbled a few more obscenities and random words, then turned her head and went right back to sleep. 

I hate visiting at meal time and I usually don’t do it.  Today, I just wasn’t paying attention to the time. 

I remembered during my visit how things used to be.

Gram always loved to feed other people.  She loved to cook.  She would always make enough for an army, my Aunt Jude and I would say.  She wouldn’t have it any other way.  After Sunday dinners, you were required to take leftovers home.  Required.  If you didn’t, Gram would be insulted. 

For most of my adult life, I went to Sunday dinner at Gram’s every week.  She made delicious meals.  Roast beef, meat loaf, pork roast, chops, sauerkraut and amazing soups.  Her mashed potatoes couldn’t be matched.  She creamed vegetables.  Creamed corn was my favorite and she often made it for me.  I would pour it over my mashed potatoes.  She always made my favorites.  “Here Mikey, I made corn for you.”  There were sweets, too – pies, cakes, cookies.  She loved to bake, too.  “Get the pie out, Ella,” Pap would say after a wonderful Gram dinner and as we drank freshly brewed coffee and waited for dessert.  Pap called her Ella.  It’s short for Elizabeth, her real name.

Things began to change as Gram’s disease progressed.  Sunday dinners took on a new twist.  They were subtle changes at first.  “I forgot to take the Goddamn vegetables out of the microwave,” she would exclaim after we had all finished dinner.  Roasts were sometimes over cooked.  Side dishes were sometimes cold and often forgotten.  Things tasted different due to missing ingredients that she forgot or because she used sugar instead of salt.   Gram was always so good at timing, ensuring that things got done together so everything was hot when we sat down to eat.  That began to change and sometimes the food was cold.  Overall, there was a sense that she was trying so much harder to do what had previously been second nature to her.  Sunday dinners became a struggle.

“What’s all this?” I ask, upon walking in the door and seeing 2 meatloaves on the counter both charred black, one still in the pan.  Farther, on the other end of the counter, was a large bowl of cabbage and carrots for coleslaw next to a bowl of lettuce she would use to make her famous hot bacon dressing salad.  She was sweating and appeared flustered and turned to me just as she was putting the mayonnaise on the lettuce salad instead of the slaw.  My heart dropped and tears burned in the back of my eyes as she immediately realized her mistake, stopped dead in her tracks and looked at me like a child who, after giving her all, had just let down her parents in a grand way.  That look burned into my memory.  I would see it again and again.  It is hard to describe – discouragement, disappointment, embarrassment, frustration, fear, anger, and sadness all wrapped up into one horrified, but at the same time, lost, look that hit like a serrated knife directly into my heart.  “It’s ok Mum.”  (Almost everyone who know Gram, called her Mum at that time, including me.)  “We can go out to eat.”  “No Mikey,” she said in a soft, weak, almost whisper of a voice, mixed with a sigh of disgust.  “I have a roast in the oven.  I just need to make the Goddamn potatoes.”  “Ok.”  I  help her get dinner together.  I want to save her any more embarrassment or stress. 

I miss those Sunday dinners.  I miss those delicious meals, too.  Most of all I miss that Gram so much.  My sisters wrote down a few of her recipes, but most were not salvaged and are somewhere lost among the bad circuits and missed connections and confusion in Gram’s ever-shrinking brain. 

Meal times here are hard for me and it’s why I try to avoid them.  There are a couple reasons.  First, I get very frustrated because I can’t get her to eat.  When she lived with me, I could always get her to eat and do almost anything.  I knew her; I knew how.  She trusted me.  “I’ll see what Mikey thinks,” or “I have to check with Mikey,” she would often say.  But here, at Manor Care, I can’t get her to even eat.  So I get frustrated and I get sad.  I know she needs to eat to live, but I can’t make her do it.  Secondly, I’m a distraction to her.  As I said, Gram loved to feed other people.  When I visit at meal time, even if she is hungry, she is consumed with trying to give me her food instead of eating it.  It’s just best that I not go during mealtime. 

Sandy, one of my favorite aides, reaches over and puts a glass of chocolate milk in front of Gram then she takes her now cold hand and places it on Gram’s cheek and neck, like they often do playfully.  This time Gram wasn’t playing.  She let out a few more grumbling obscenities, put her head down and went back to sleep.

As Sandy began to walk away, she said to me, “She hasn’t been eating, you know.”  “Oh,” I say, surprised.  “It’s been like this for a couple of weeks.  She drinks, but she just won’t eat.”  My heart sinks.  We’ve been here before – twice actually.  Gram stops eating, loses a bunch of weight and is placed on hospice.  Both times before, she subsequently began eating again and was discharged from hospice.  My heart hopes this is just a temporary thing.  My brain knows it could go either way.

WTEA 2014

I don’t normally partner up or join groups when I participate in events that represent causes that are close to me, such as the Walk to End Alzheimer’s. 

Today, as I was surrounded by thousands of people, I was alone – deep in my own thoughts, distant.  You see, this event, this disease, are very personal for me and today was very poignant and solemn as I remembered.

My earliest memory in life was with Gram, at my aunt’s wedding.  Representative of my fearful self at that time, I was hiding behind her pleated skirt, only occasionally peeking out to see what was going on.  She was my strength and my protector then.  She still is now. 

The irony of today was that it was a time for me to remember – at an event for memory loss.  I remembered where we’ve been over the years since this disease first started with Gram probably 9 years ago; all the stages, most of which were textbook,  that have led up to today – late stage.  I remembered when I determined she could no longer live alone and how I had to introduce help to a staunchly independent woman.  I remembered when I moved her into my house and subsequently to assisted living.  I remembered the day I had to move her things out of the assisted living facility, knowing that she needed skilled nursing and would not be returning.  I bawled my eyes out as I packed up her room.  I remembered the days of Gram’s Sunday dinners and how much I miss them – all the fighting, too.  I remember taking her grocery shopping and hating it so much.  Damn, what I wouldn’t give for a Gram shopping trip today.  I remembered all the Christmases - those that wouldn’t have been complete without her.  Thanksgivings, Easters and birthdays – I remembered all of them.  I miss all of them.  I miss all of them the way they used to be – with Gram. 

It was also a day for me to think about where we are today:  Gram’s memory is gone.  Her ability to make complete sentences is mostly gone and sometimes she simply makes noises that aren’t even words.  She doesn’t remember most people.  She remembers me – my name, but can’t always remember how I fit.  Sometimes, I’m her husband, sometimes, her son.  The other day, she actually referred to me as grandson.  BUT, she is physically active and healthy; she has no pain.  She is happy.  She is loved.

Lastly, for a moment today, I wondered what the future holds.  Then I stopped myself.  I know what the future holds.  What’s more important is that, as much as I miss the “old” Gram, I am happy and honored to know the “new” Gram.  I am also grateful to still have her with me. 

Since I was a child, I have feared losing Gram.  Today, I don’t so much because she’s been slowly leaving me for years and thus, easing me into it.  They say Alzheimer’s is the long good-bye.  It is.

Grateful

Tonight’s visit with Gram was, on the surface, uneventful.  She was sitting in the wheelchair in the lunch room sound asleep.  She gets like this after a few days of activity - activity that is nothing less than amazing for a woman of her 97 years.  She walks and wheels herself all over the facility; she visits other patients in their rooms; and she sometimes gets behind the nurse’s station as if she works there.  It’s a pattern; she goes and goes for a few days and nights (she tends to be a night owl) and then she stops and sleeps to recharge.  Sometimes she sleeps for a couple days.  It’s a deep slumber.  In fact, when she first started sleeping like this a few years ago, I would find myself checking to be sure she was alive.  Her breathing becomes so soft and shallow and her body so still that I would put my head on her chest to ensure she was breathing.  I’ve learned to never try to wake her either.  The one and only time I tried THAT, it took a long time for her to respond and when she did, she almost killed me!  I sometimes wonder when she’s in this slumber, if she’s taking a peek at the “other side.”  It seems like she’s not even there - her body is breathing, but she’s not there.  In fact, I joke about that, saying she’s checking out the other side for a bit.  She comes back, though, because she’s not quite ready to go there.  And believe me; well all agree that SHE will decide when it’s time for her to go. 

It wasn’t quite so uneventful in my head tonight, I suppose.  As I sat there with her, quietly, I thought about how grateful I am for the care that she gets there.   Gary, Stefanie, and Chris were the aides on tonight.  Gary and Stefanie have been there for a while, at least a few years.  Chris is newer.  They are all my favorites.  They love Gram.  They care for her as if she was their own family.  They feel like family to me too.  Rightfully so, I go there often and see them more than some of my own family.  I always try to thank them for caring for my Gram.  I can’t thank them enough, though. 

Gary and Stefanie came in as I was getting ready to go and we talked for a few minutes.  They joked that it was time for them to get Gram changed and ready for bed and that they would get beat up when they tried to do so.  They were really not joking though.  Stefanie has been bitten at least once by Gram and they’ve both been punched.  The laughed and told me that once she’s changed and lying down, she’s completely calm and sweet.  Regardless, they take excellent care of her.

Gram fell twice in the last two days.  I get calls every time she falls, which is probably twice a month on average.  It’s required by law, I believe, that they call.  Gary, Stefanie and I were talking about this, too.  It’s amazing how she just gets up and continues along her way.  People her age don’t do that!  They break bones and die.  We talked about how many people we’ve seen who fall and within a couple of weeks, they die.  Gram is remarkable.  Her first fall this week, she tumbled out of the chair and hit her head.  They said she used some profanity, got up, and then went about her business. 

Last Visit With Dad

April 4, 2014

This month marked the 12th anniversary of the death of my Dad.  William M. Burroway died in April 2002 of throat and lung cancer.

Tonight I was reminded of some memories and I was shaken to my core when some of those emotions came flooding back.  Dad was abusive – emotionally and physically.  He was an alcoholic who never found his way to sobriety.  He was a sick man in so many ways.

Four months prior to his death, I went to visit him in the hospital.  It had been 23 and ½ years since I spoke to my dad.  The last words my dad said to me when I saw him at 16 years old rung in my mind over and over for all of those years.  As bad as that was, it drove me to succeed – to prove him wrong.  He said that day, “What are you going to do when you graduate high school?”  I said, “I’m going to college.”  He replied, “You’ll never succeed.  You’re nothing but a little faggot.”  When I left that day, I said to him, “The next time I see you will be at your funeral and the ONLY reason why I’m even going to be there is so I can check your pulse and make sure you’re dead you son-of-a-bitch.”  Turns out, it wasn't the only reason why I went to his funeral.  Read on…

The impetus for my visit that December night in 2001 was a phrase that someone I knew back then said one evening.  Liz said, “Hurt people hurt people.”  Sadly, Liz since took her own life and thus went to her grave never knowing how her saying those words that night would change my whole life.  You see, throughout all of my teenage and adult years, I carried around an image of my dad as an ogre – someone who had and who could still hurt me; someone who was bigger and more powerful than me.  Liz’s words made me stop and think that maybe my dad didn't have it so well with his own drinking parents.  For the first time in my life, I felt I might be able to find forgiveness.

A very dear friend of mine offered to go with me that night over to Montefiore Hospital.  Dennis didn't go into my dad’s room, but waited for me downstairs.  I will always be grateful for Dennis being part of that night.

 I was terrified, but when I walked into his room, my dad was clearly surprised.  Oxygen tubes in his nose and a tracheotomy in his neck, he said, “Of all my kids, you are the one I never expected to come and you are the only one that did come.”  I said, “I’m not here for you, I’m here for me.”  Beyond that, we made small talk about how my mom, brothers and sisters were – he was very interested in how my sisters’ lives turned out.  He was interested in how my life progressed.  Oddly enough, I found myself, after everything, still seeking my dad’s approval.  The words were not spoken, but I could see in his eyes, he was proud of me; he was truly happy that I came.  In hindsight, I hope I gave him a little peace that night – only a few months before he died. 

It was that night that I learned that my dad had 22 children.  That’s what he said.  I chuckled and stated that I thought it was only 18. 

After about 40 minutes, things fell silent – we were out of things to say- so I said that I had to go.  Dad stood up and reached to hug me.  Upon doing so, his pajama bottoms fell from his thin, frail body to the floor.  I hugged his 70 pound body and felt his shoulder bones in my hands.  I turned away so he wouldn't see the tears.  It was at that moment that the image of the overbearing ogre that I carried in my head all those years was replaced by an image of a frail, pathetic, small man that could no longer hurt me (or anyone else).  I realized that I could love this man – not necessarily as my father, but as another human being; one suffering from the disease of addiction; one who was going to die a sad, lonely and pathetic death after living a life of the same.  The seed of forgiveness was planted.

It was a few days before I actually felt the impact of that experience.  I learned what true forgiveness felt like and how it really was about me letting go.  A huge burden was lifted from me and my life was forever changed.  No more did I walk around with the constant feeling that the other shoe was going to drop.  No more was I terrified of letting people know me.  So many fears disappeared that week.

My family was concerned that I saw my dad that night and that I went to his funeral.  But, the fact is, I could forgive my dad.  I didn't mean that I condoned his behavior for even a second.  It only meant that I could let go of the past – of something that I couldn't change.  

2014 Walk to End Alzheimer's

I don’t normally partner up or join groups when I participate in events that represent causes that are close to me, such as the Walk to End Alzheimer’s. 

Today, as I was surrounded by thousands of people, I was alone – deep in my own thoughts, distant.  You see, this event, this disease, are very personal for me and today was very poignant and solemn as I remembered.

My earliest memory in life was with Gram, at my aunt’s wedding.  Representative of my fearful self at that time, I was hiding behind her pleated skirt, only occasionally peeking out to see what was going on.  She was my strength and my protector then.  She still is now. 

The irony of today was that it was a time for me to remember – at an event for memory loss.  I remembered where we’ve been over the years since this disease first started with Gram probably 9 years ago; all the stages, most of which were textbook,  that have led up to today – late stage.  I remembered when I determined she could no longer live alone and how I had to introduce help to a staunchly independent woman.  I remembered when I moved her into my house and subsequently to assisted living.  I remembered the day I had to move her things out of the assisted living facility, knowing that she needed skilled nursing and would not be returning.  I bawled my eyes out as I packed up her room.  I remembered the days of Gram’s Sunday dinners and how much I miss them – all the fighting, too.  I remember taking her grocery shopping and hating it so much.  Damn, what I wouldn’t give for a Gram shopping trip today.  I remembered all the Christmases - those that wouldn’t have been complete without her.  Thanksgivings, Easters and birthdays – I remembered all of them.  I miss all of them.  I miss all of them the way they used to be – with Gram. 

It was also a day for me to think about where we are today:  Gram’s memory is gone.  Her ability to make complete sentences is mostly gone and sometimes she simply makes noises that aren’t even words.  She doesn’t remember most people.  She remembers me – my name, but can’t always remember how I fit.  Sometimes, I’m her husband, sometimes, her son.  The other day, she actually referred to me as grandson.  BUT, she is physically active and healthy; she has no pain.  She is happy.  She is loved.

Lastly, for a moment today, I wondered what the future holds.  Then I stopped myself.  I know what the future holds.  What’s more important is that, as much as I miss the “old” Gram, I am happy and honored to know the “new” Gram.  I am also grateful to still have her with me. 

Since I was a child, I have feared losing Gram.  Today, I don’t so much because she’s been slowly leaving me for years and thus, easing me into it.  They say Alzheimer’s is the long good-bye.  It is.