"More Dead Than Alive" – Five Years Later

“Unfortunately she’s more dead than alive at this point,” were the words I heard coming from the other end of the phone from Dr. B, Gram’s PCP.  I was at work and upon hearing those words, immediately began to cry.  “I wouldn’t expect her to make it through the night,” she went on as I sobbed uncontrollably in front of my colleagues – AGAIN!  This was the second time in as many weeks that I got such a call from Dr. B.  Gram had been taken from Elmcroft Assisted Living to the Emergency Room due to a Urinary Tract infection combined with a C-Diff infection.  The earlier conversation with Dr. B. went as follows, “Your grandmother has made her decision; she’s ready to go.  She’s given up and probably won’t make it through the night.”  Needless, to say, I spent a couple nights sleeping at the hospital. 

After three weeks in Intensive Care at the hospital and in a barely conscious state, we were told by the hospital social worker assigned to her, that Gram had to leave the hospital and we should seek out a skilled nursing facility.  Due to the C-Diff infection, Elmcroft would not take her back and she was too sick for assisted living anyway.  Being prepared, as I thought I was, I quickly handed over my top three choices for facilities.  You see, I had previously done my research according to what the literature and other social workers had suggested, and select my top three. Unbeknownst to me and despite what the social workers and literature told me about selecting those top three choices in advance, I was surprised to find that it really didn’t matter.  (By the way, I never really found any of the social workers very helpful.  It was probably because I had done so much of my own research though).  My top choices were those that, based on my research, were given ratings and reviews by individuals as well as regulatory agencies.  Obviously, my choices would be those with the best ratings.  These facilities, naturally, were full and had waiting lists for beds.  One had a three year waiting list.  “She’ll be dead by then!” I retorted when they told me on the phone.  (Little did I know, she actually WOULD NOT be dead in three years.  Read on.)

After all three of my choices were nixed, I was told by the social worker that the only facility reasonably close with a bed available was ManorCare.  I agreed to move Gram there.  (The other thing they don’t tell you in the literature is that time is of the essence.  You don’t have much time to find and place your loved one.  Once the hospital (insurance) decides you are out, they’ll put you on the street if they have to.)

Gram arrived by ambulance to ManorCare late the evening of September 14, 2010.  It was a long day getting her discharged and transported from the hospital but the ordeal had only begun.  Emotions were high already, too, since we believed she was simply being put at ManorCare to die.  When she arrived, she was left in a gurney and dropped off in the hallway where she remained for what seemed hours.  The facility was clearly not appropriately prepared or staffed for her.  She was eventually assigned room 141.  She was taken back there and we quickly realized that not only was the bed over-sized (for a very large person), but it was also broken.  We requested another bed.  Again, we waited and we waited.

Just as has proven to be representative of the staff at ManorCare over the years, a young female CNA finally came to our rescue.  She single-handedly dragged the broken bed out of 141 and then took it upon herself to search and find and empty room with a bed.  In a few minutes, she came back frantically pushing the bed she found into Gram’s room made it up for her.  Fortunately for Gram, she was asleep the whole time and thus oblivious to everything that was going on.  The CNA sought out help, returned with two others and the three CNA’s proceeded to get Gram into bed, finally.  Gram slept.  We left.

Gram spent the better part of the next three weeks barely conscious.  Her deep sleep scared me as I thought she would be leaving me soon.  Day after day I visited, waiting, wondering, talking to her and trying to come to terms with the inevitable and searching deep inside for the strength and gratitude to get me through this process. 

I soon learned, however, that Gram’s journey at ManorCare had only just begun.    Somewhere around three weeks, Gram awakened and began talking.  She almost immediately became restless and wanted to get up and walk.  She began to eat.  The staff engaged the physical therapy team and before long Gram was walking the halls.  In fact, she was eventually cut off of physical therapy because her insurance would no longer pay for it.  It was fine, though, according to the PT staff, because she was getting  more exercise walking the halls that most of even the staff!

The rest is history!  Over the five years, Gram has had her ups and downs – moved to hospice and discharged – TWICE!  She mostly doesn’t walk anymore, but she’s managed to master the wheelchair and at any time can be found somewhere around the first floor wheeling herself with one hand and pulling along the wall rail with the other – her feet moving back and forth so quickly, she appears to be running while sitting.  Although her mind is mostly gone and the disease has taken her ability to consistently make complete sentences or to recognize people, at 98, Gram remains physically strong and healthy (ask any of the Aides who attempt to shower or dress her or put her to bed).  I fully expect to be celebrating her 100^th birthday with her (if I make it, that is).

What a miracle and inspiration coming from this woman who, five years ago, was put there to die!

Irony                                                                                  

I left Crossfit feeling defeated and sorry for myself. I've had persistent pain in my right shoulder that has recently gotten worse.  I originally thought it was residual from the bicep tendon I ruptured in January.  However, it hasn't gone away and lately I've started thinking it’s a Rotator Cuff issue.  As I drove to Manor Care to see Gram, I was thinking about the impending MRI that I’m having Friday and wondering what the results will be.  A Rotator Cuff injury – even without surgery – is a long recovery.  If surgery is needed, it’s much longer.  In either case, I would likely need to consider giving up Crossfit.  That angers me.  And that, along with the work-related drama that’s occurred over the last few weeks has exacerbated my anger. Poor me.

As I walked my cranky ass into the facility, Sandy directed me to Gram who was down the hallway near her room.  As I approached, I noticed something odd; she was wheeling her wheelchair down the hallway with her eyes closed!  As I snapped a photo of her, I couldn't help but to smile.  This woman always cheers me up!

We sat in the hallway in front of the nurse’s station and Gram toyed with the bottle of Gatorade that she stole from me.  She drank some, but mostly just kept taking the lid off and putting it back on. 

While we sat there, I heard Harry, who was down the hall, singing, of all things, “The Sun Will Come Out Tomorrow.”  (I had previously referred to Harry as the “Gay One,” since I didn't know his name and he struck me as such.  Then, for a while, I wasn't so sure.  It could have just been that I interpreted his over-the-top friendliness as gayness.  Tonight’s rendition of that show tune, however, may prove my original notion to be correct). 

Sandy brought some ice cream for Gram.  It’s funny how something as simple as watching Gram eat ice cream can lift my spirits.  She’s so much fun to just watch.  She was so focused on getting the hard ice cream out of the container with the plastic spoon that she was deep in her own world, stopping only occasionally to offer some to me.  (I would graciously say, “No, thank you.”)  As she devoured the ice cream, I was catching a glimpse of red on her fingers out of the corner of my eye.   At first I thought it was blood.  Then I remembered that Monica had painted her nails last week and what I was seeing was remnants of the polish.  Again, I smiled.

As I prepared to leave, Chris, one of my favorite aides, stepped behind the nurse’s station and I overheard him saying that his blood pressure was very high – something like 160/120.  That’s crazy.  He's 31!  Stefanie told him to sit for a while.  He said he didn’t feel well. Eventually, the whole gang gathered around the station – Gary, Carol, Sandy, Stefanie and some others.  They were all concerned about Chris and urging him to talk to his doctor about it.  I was concerned too.

But amidst all the commotion at the nurse’s station, Gram was still quietly going about digging the ice cream out of the cup and eating it.  Then, once again, in the background, Harry began blurting out “The Sun Will Come Out Tomorrow.”  I kissed Gram on the forehead and said what I usually say, “I have to go to work; I’ll see you when I get home.”  “I guess,” she retorted, still intensely focused on the ice cream.

As I walked down the hall and toward the exit, my mood was better.  I thought, “Yes, this too, shall pass.  The sun WILL come out tomorrow.”  I opened the door to go outside.  SNOW!!

Hang Time

Perhaps my favorite story that perfectly epitomizes the dynamics of Gram and Pap’s marriage is one that took place when Pap was bedridden after having lost his second leg from Diabetes.

I was staying at Gram’s house at the time.  I vividly remember sitting at the dining room table while Pap was in his hospital bed in the makeshift bedroom/hospital room that had once been Gram’s living room.  Gram’s house was small and she enjoyed open concept living long before it became desirable and trendy.  Pap’s bed was along the wall in the living room and therefore could be seen from anywhere in the kitchen and dining room.  Gram resented having lost her living room to that damn hospital bed.  So much so that, the night that Pap died, Gram said to me, “I want you to call first thing tomorrow morning and get that Goddamn bed out of my living room.  I want my house back!”  I did.  She got her house back.

That day, I was sitting at the table facing toward Pap’s bed and reading the paper.  Gram was getting him up into his wheelchair as she did religiously every single day.  “He’ll get bedsores,” she would say in her disgusted voice, “Like he had when he was in that damn hospital.”  (Gram used to get so angry about the care that Pap got during his many, many stays at St. Francis hospital.  Non one could care for him the way she did.)  She used a Hoyer lift to get Pap up out of his bed and into his wheelchair.  Although he was perfectly capable of helping out by rolling and lifting some of his own weight, he usually would not.  He’d lie there like a dead body and let her do all the work.  This, of course, angered Gram.  She would swear profusely and talk under her breath, as if he could not hear her, the whole time she was doing it.  The Hoyer had a gray, square canvas material sling that was about four feet square.  It had grommets on each corner where the chains would attach.  Gram would roll Pap to one side, slide the sling under him, then roll him to the other side and pull it through while rolling back to center.  The sling had to be centered under his body in such a way that he would be balanced while he was being lifted.  Once the sling was under his body, Gram would wheel the lift so it was centered over the bed.  The lift was designed so that the base could be slid under the bed so that the top was extended over the bed.  She would connect the four chains to the sling and then to the hooks on the top of the lift.  Once connected, she would lock the brakes on the lift, then grab the handle and pump him up.  Once he was high enough to clear the bed and the wheelchair, she would unlock, push and turn the lift in such a way that she could lower him over the wheelchair seat. 

That particular day, Gram had gotten Pap into the lift and pumped up.  Since he had no legs, he looked really funny dangling and spinning back and forth as he hung there.  Suddenly, I glanced up and Gram was gone.  “Where the hell did you go, you Goddamn bastard?” Pap squawked at that very same moment I looked up.  Then, from behind the closed door of the bathroom comes, “I had to take a Goddamn leak, you son-of-a-bitch!  You’ll just have to wait!”  I looked down at the paper I was reading and pretended to not be paying attention, while I held back my laughing.  I made sure not to catch Pap’s eye so he would not see me laughing while he dangled there helplessly.

Gram eventually came back and they continued the bickering and name calling until she got Pap into his wheelchair and over to the table where she would then make his breakfast. 

To this day, I still laugh when I remember that day.  I love to tell this story.

For Better or Worse

“You coming you stupid bastard?” Gram blurted out as she wheeled her way toward the door that leads outside in the back of the vending room in the Long Term unit.  “Come on, I’m going home!” she continued, partially twisting around in the wheelchair so that I knew she was addressing me. 

For the past couple of weeks, Gram’s been living up to the name that the first aide she encountered at Elmcroft Assisted Living affably gave her the day she arrived back in March of 2010.  “Spunky” stuck with her throughout her tenure at Elmcroft – not only in name, but also in demeanor.  But lately, she’s not only spunky; she’s been downright nasty, at least with me. 

One of the most amazing things I find about Alzheimer’s disease, is how Gram can look right at me but see someone else.  Granted, there are times that she sees me as Mikey, the little boy, and others that she sees me as Michael, the grown man, but in those cases, I’m still me.   But the times when she sees me as a completely different person, such as her dad, or her son, or as it was this past week, her husband - these times really amaze me.  She not only calls me by their names, but she also treats me the way she treated them.  It is very real to her and I have learned over the years to never try to argue these things.  It only upsets her.  I go with the flow.

To me, it’s clear that her comment above and her general nastiness toward me lately, were actually directed toward Pap, my grandfather and her husband – the person she saw when she first looked at me that night when I arrived and found her in the vending room.  That’s exactly how she talked to him – and him to her for that matter.  And the angry, hateful look on her face was typical of how she looked at Pap when she was angry. 

Gram and Pap were married 56 years when he died in June of 1994.  They bickered constantly.  I would best describe their marriage as a love- hate relationship, one characterized by lots of yelling.  “Why don’t you take a good suck on my ass,” was one of Pap’s favorite comebacks when Gram was screaming at him.  “Go to hell you son-of-a-bitch,” she would reply.  The words “Goddamn,” “son-of-a-bitch” and “shit” flowed as naturally out of Gram’s mouth as they might out of a truck driver’s.  (They still do).  There was just an emphasis and loudness added to them when arguing with Pap, which was often.   Perhaps the funniest part of their arguments was when one or the other didn’t hear what was said and would go off screaming and ranting about what they thought they heard, only to get even angrier when they found out they were screaming at the other about something that wasn’t even said.  When Pap became bedridden and would remain that way the last 10 years of his life, the words, “I’ll kill you, you son-of-a-bitch,” could often be heard coming out of Gram’s mouth as she catered to his every need and cared for him around the clock – even though in many ways, he was perfectly capable of doing for himself.  His general laziness, constant demands and disregard for her needs would get her fuming.  Once, when he was trying to manipulate her in his usual way -by saying he wished he would die- she surprised him.  “I wish I would just die," he whined.  “Me too!” she snapped.  She didn’t mean it; at least I don’t think she did.  Another time, she got so frustrated; she grabbed the pillow and held it over his face as if she was going to smother him.  He really was a piece of work.

Nonetheless, throughout their marriage and despite their bickering, Gram took her wedding vows very seriously.  “In sickness” was underscored in Gram’s marriage.  Pap was often sick and as much as she may have hated it at times, Gram was devoted and always there taking care of him.  During the many, many times he was hospitalized at St. Francis hospital, Gram, who never got a driver’s license, would find her way to the hospital by bus or whatever to be by his side.  Often she was getting a bus there after working a long day herself.  She would sit religiously at that hospital until visiting hours were over.  Even though the time was spent bickering, she was there.  It’s doubtful to me that Pap would have done the same had the situation been reversed.  The night Pap died, he did so shortly after Gram had left, which was a few minutes before visiting hours were over.   When I got the call and hunted her down to tell her of his passing, she responding immediately by saying, “I should have stayed.  I shouldn't have left early.”

We used to joke with Gram that she was keeping Pap alive so she could keep his pension coming.  There may have been some truth to that, since Pap, who had a very nice pension from his job, chose to take the entire distribution while he was alive rather than leave a portion for Gram to receive after his death.  “I’m taking everything I can get while I’m alive,” he used to say.  Gram’s income was cut in half when Pap died. 

Gram told me once that if things were, back then, like they were today, she would have divorced Pap.  I wonder.

Even today, Gram will sometimes say, "I have to get home.  Daddy's gonna be mad if I don't make supper." (She often referred to Pap as 'Daddy').  She was an old school wife who took that role very seriously.