The Final Journey, Part 2

Thursday October 6, 2016

As I sat in the evening and contemplated the decision I made earlier to put Gram on hospice, I thought about all of the wonderful memories. For the past couple of weeks, my life with Gram had been passing before me. Perhaps it was a premonition for what was now happening. At random times, images of wonderful memories and moments would pop into my head. They were special things we did together and things she did for me. There were memories of West View Park, Kennywood Park, Christmases, Thanksgivings, visits to Emlenton, saving me from thunderstorms and fireworks, comforting me during nightmares, high school graduation, college graduations, family day at Gateway Rehab, and many others.

Gram was my rock, my guide, my inspiration, and my friend. She was the first person I wanted to tell when good or bad things happened in my life. Whether it was a new job, new car, buying my house, a new relationship, ending a relationship, or getting sober, I couldn’t wait to tell her.
            These memories made me feel so grateful now, but at the same time, terrified. Even though I hadn’t been able to share things with her over the last several years the way I had before, I still went to her. I still got comfort and strength from her.  And I had never been able to imagine my life without her. Now I knew I had to.

Where would I be without her? How would I see myself had it not been for her? Would I know how to really care for and love another person? What type of person would I be? These questions churned in my head as I thought about losing her. Then suddenly I flashed back to the day I moved her out of Elmcroft Senior Care.

Leaving Elmcroft was another one of those turning points in Gram’s journey where there was no turning back. Gram had been taken to the emergency room because of a urinary tract infection coupled with a C-diff infection. She was very sick and almost died in the ICU, but was subsequently moved to ManorCare. We were convinced she was placed there to die. Even if she survived, Elmcroft wouldn’t take her back with a C-diff infection unless she could test negative 3 consecutive times. That was unlikely. And the hospital social worker was helping find skilled nursing care if we needed it. I had to move her out.

She didn’t have much there, but it took me hours that day to move her out of that room. My sobbing continually interrupted the packing and emptying process and I’d find myself alone, sitting on the bed or in the chair, paralyzed in my own emotions. It was a slow, difficult process.

But now, when Dr. Woodburn’s physician’s assistant called me after seeing Gram earlier and suggested hospice, she said, “She’ll get the extra help that she needs at mealtime. Maybe she’ll eat better.” “Ok,” I agreed. 

Although a momentary surge of hope went through me, I didn’t have a good feeling this time. Even though Gram had been on hospice twice before and discharged, this time felt different. She was only 105 pounds. She lost 2 pounds in just the last week and 12 since late July. My milkshake routine didn't seem to be working. Yes, I hoped hospice would get her additional attention at mealtime and just maybe she’d start eating again, but I didn’t think she was going to recover for the long term. I most certainly, though, didn’t think she’d be gone inside a week either.

Eating had become such an issue lately with Gram. She had actually become angry about it. That’s also why this time was different. “I don’t want it,” She’d yell when I tried to feed her. She even began throwing food at me, like the french fries she flung at me when I tried to put them in her mouth.  Perhaps she made her decision then. Perhaps that was her way of saying, “I’m done.” We always said Gram would decide when it was her time. In hindsight, I think she had.

The physician’s assistant contacted Heartland Hospice.  It wasn’t long before the hospice liaison contacted me and we planned to meet the next day at 1:00 pm in Gram’s room at ManorCare to sign the papers. I was sad. At that point, I thought the worst part of going on hospice was taking her off blood thinners and knowing that a clot could form, travel to her lungs or brain, and kill her. Later, I would find out it really wasn’t a big deal and eliminating the blood thinners was necessary.

When I visited Gram the night before, she wouldn’t even drink the milkshake. She was somewhat talkative, but her voice was soft and strained. She was weak, I could tell. She made mostly random sounds, but at one point said, “That Sandy is a good boy.” (Sandy was Jude’s old dog). Where did that come from? I thought, as she continued on with the random sounds.  Later, right before I left, she managed to clearly speak the words, “I have to get the hell outta here.”

But on this night, she lay in her bed, asleep and peaceful. She was breathing so lightly, it was if she was already dead, except her heart was beating.

The Final Journey, Part 1

Wednesday October 5, 2016

When I got the call back in June from the speech therapist at ManorCare, I must have been in denial.

“She’s not eating well. She seems to be having trouble swallowing,” the soft-spoken, kind woman said to me over the phone. I didn’t believe her. I didn’t WANT to anyway.

“I don’t think she has a problem swallowing. You just have to understand that she’s like a child during mealtimes. She doesn’t focus and she’s easily distracted. You have to keep her focused on eating.”

“Perhaps putting her on a mechanical soft diet would help,” she went on.

“We’ve tried before and she hated the food.  ‘That looks like shit,’ she’d say. But I guess we can try again, though.”

I agreed to it, but then the next day called the speech therapist back and changed my mind. I just knew she wasn’t going to eat her food that way and I didn’t want to put her through that again.

I decided instead, I would try to spend more meal times with Gram and bring her food that I thought she might like. Historically, I hadn’t visited much at mealtimes unless we were having a family gathering. When it was just the two of us, I was a distraction. Gram would constantly try to give me her food instead of eating it. “Here, it’s yours,” she’d say as she tried to hand things to me from her tray. “No, that’s for you. Go ahead, eat it,“ I’d urge.

In August, I got another call. This time it was a nurse. She said Gram lost 5 pounds in the last month. She wasn’t necessarily asking for action or making suggestions, she was just expressing concern. I had to step up my efforts. Gram was always trying to “fatten up” other people. Now it was my turn to fatten her up.

Around that time, I had read an article regarding Alzheimer’s patients and their eating issues. The author suggested minimizing the number of things on the patient’s food tray. The author went on to suggest that too many items can be overwhelming for the patient. They don’t know where to begin. Minimizing the number of items helps them focus. The article was timely and made sense to me. It was certainly true for Gram. When she would get her tray, she was immediately interested in all of the things on it – the carton of chocolate milk, the soup, the pudding, and the coffee, etc. “What’s this?” She’d say as she picked up each item and held it in front of her or tried to hand it to me.

I tried this approach during the recent visits at mealtime. First, I removed everything from her tray but the main course. I helped her focus on that. Once she was finished with the main course, I would remove it and bring forth the next item. It seemed to work, but I only had a few tries at it before she just didn’t want to eat at all anymore.

I started bringing milkshakes and burgers or fish sandwiches and french fries from McDonald’s, too. At first, she’d eat most of the burger or sandwich and some of the fries, but soon, it was only a few bites, then eventually, none. She’d still drink the milkshake though and I was happy to get at least those 670 calories into her.

I began to add things to the milkshakes as she drank them down. I added chocolate milk at first, and then I began using nutrition drinks. Each of these had 325 calories. Sometimes I could get her to drink all of it - the milkshake and the nutrition drink. It was close to 1000 calories. That made me happy. And when she seemed disinterested in drinking any more, I’d wheel her around the floor. Having the drink in her hands and being distracted while I wheeled her, she would inadvertently drink it down.

Over the weeks since the calls from the speech therapist and the nurse, Gram’s appetite waned as did her strength. On some level I knew what was happening, but I was denying it. She had gone through periods before of not eating and she always regained her appetite. After all, she was on hospice twice and discharged! 

I was hoping my attempt at the extra calories was helping, but Gram continued to lose weight. On October 5, during my visit, I asked the nurse, Rachel, to check to see when she was last weighed. It was the day before. She was 105 pounds.  I asked about her weight history. She was 117 on July 23 and just as early as a week ago, she was 107. She had lost 2 pounds in the last week. It seemed my efforts were not working.

“Maybe I should engage hospice,” I said to Rachel.

“Do you want me to call them?” She asked?

“How about having the doctor see her first?” I replied.

She submitted the request.

Beautiful Journey

Tonight’s life lesson for me:  Don’t ever doubt or take for granted how beautiful and meaningful this journey of life can be.  Appreciate and value those who help you, always.  Approach the journey with grace and it will be reciprocated tenfold.

As I stood at the nurse’s station talking to the (awesome) team of nurses and aides that take care of Gram, I was telling the story of Gram’s arrival at Elmcroft back in 2009.  Some of the team members working tonight only recently started working at Manor Care and therefore don’t know much of Gram’s story.  “She was at Elmcroft?” Melissa asked.  “Yes,” I said.  “My son works there,” she said.  “Oh?” I said.  The conversation ensued, during which time I remembered her son, Randy, was instrumental in not only getting Gram settled in when she first arrived at Elmcroft, but also in ensuring she was well cared for during her 18 month stay. He was a hard-working, conscientious young man and very likable.

I was reeling from that “small world” moment while Melissa pulled out her wallet and showed me a photo of her son with his grandmother.  It was a beautiful photo of the two of them, but I was awestruck as I realized  I had forgotten that Randy’s grandmother is Darlene – one of the nicest people I have ever met in my life- and with whom I worked at Eat n’ Park way back in 1982.  Yes, 34 years ago!  Randy and I had determined this during some conversation we had one day back at Elmcroft.  Wow, I thought, not only do I know Darlene, but her daughter and grandson, too, both of whom have taken care of Gram.

Randy is still at Elmcroft.  Melissa is now at Manor Care.  Darlene stayed at Eat n’ Park until her recent retirement.  On those occasions where I had a day off of work and would happen there for lunch, I would enjoy seeing her and it would take me back to that time when we worked together all those years ago.

Tonight, I am reminded of this wonderful life journey and how grateful and touched I am for those meaningful connections that I made then and that continue today.   It really is an amazing journey.

"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.