The Final Journey, Part 8

Monday October 10

“Michael? This is Sandy from ManorCare….Gram passed.” Her voice was sympathetic but professional. For all these years, I dreaded getting this call. In fact, every time I got a call from ManorCare during the night, I thought it was this call. But this morning – this time- I knew what it was. There was no dread; I expected it. It was why I had placed the phone right next to my head when I went to bed. I was oddly calm but I’m sure I sounded as deflated as I felt. Sigh. “Ok. I’ll be right there.”

I don’t remember if I even showered before I left the house. I don’t remember being in a hurry. There was no point now, except I wanted to get there before anyone else. I wanted some quiet time with Gram before the commotion with hospice, family, and funeral began.  I longed for a few quiet moments as I knew my life was going to get very busy coordinating things and very emotional dealing with it all.

I walked down that long hall to Gram’s room like a zombie. I was completely oblivious to what was going around me. It was as if I was walking through a dark tunnel with no visibility, but somehow knew where I was going. I heard nothing; I saw nothing. It was as if the place was completely empty and everything was still. I only heard my own heart beating intensely in my ears. My breathing was short and quick with anticipatory anxiety.

The door to room 141 was closed, of course. I walked in slowly, turned, and closed it behind me. Gram’s body was still slightly warm. Her mouth was so wide open that it looked like someone pried it that way. The first thing I did was try to close it, but it was too stiff. I couldn’t budge it.

The bright sun was shining in the window and it draped across Gram’s lifeless body, which now was grayish in color. I touched her arm and hand. I instinctively felt for a pulse. I kissed her cheek and forehead. I pushed her hair back behind her ears as I spoke softly to her. I expressed my disappointment that she wouldn’t let me be there when she left. “I understand, though," I said. “You’ve always protected me.” I said good-by, I reassured her that I’d be ok. I thanked her for teaching me how to be ok. I thanked her for everything she had done for me. “I’ll be sad; I’ll be lost for a while,” I said. “But you’ll always be with me – in my heart…I’ll take good care of Teddy, too. You’ll be with Chubbs now. Send him my love... and Bobo... I love you.”

I sat quietly like this with Gram for about an hour before I called the hospice liaison to send the nurse. I had contacted Michelle earlier and she, too, was on her way. As I waited, I realized that this would be my last time in room 141 – or it should be anyway. So I began cleaning things out. I gathered the few things that I wanted and decided to leave most other things – Gram’s clothes and TV – at the facility as donations to other patients who might need them.

I went about removing clothes from the closet and drawers in the matter-of-fact way I always put them away if Gram was in her bed when I brought her clean laundry. I organized and folded them by placing them all over her body and bed. During the course of Gram’s illness, it was always important to me that I be matter-of-fact and go about business as usual. I believe this put her at ease. I had to do it now, too.

I was grateful to have this last quiet alone time with Gram. Even though she was dead, her room seemed full of life. Perhaps it was because of the flood of wonderful memories that passed through me while I was there with her.

When the hospice nurse arrived, she asked me for the name of the funeral home to contact. Gram had pre-paid with Ogrodnik’s back in 2008.  She had asked me to take her to do it. She was wary back then to pre-pay, though. “What happens to my money if you go out of business?” I remember her asking the funeral director. “The money is put in a separate investment fund and is technically independent of any funeral home. It can be used anywhere. But you don’t have to worry. We’re not going out of business. People are always going to die, right?”

Ogrodnik’s went out of business just the week before Gram died. “We’ve been in the process of sending letters to all of our pre-need clients,” The guy on the other end of the phone said to me after the nurse handed it over. “You are kidding me,” I said, almost chuckling as I remembered that conversation back then.  Gram was right for being wary, I thought. They were able to suggest another funeral home in the Dignity network – H.P. Brandt. It was actually a better location with ample parking. Michelle and I planned to meet there at 1:00pm to discuss the arrangements.

By the time the funeral home representatives arrived to take Gram’s body, I had packed up all of her clothes and belongings. Although I know would come back to the facility in the future to visit, I didn’t want to come back to room 141. At the very least, I didn’t want to have to come back and pack up her things. This way, when they arrived to take her body, Michelle and I were able to leave, knowing that part was done. I took pictures of Gram’s room as we walked out. I wanted to remember it.

I went home after leaving ManorCare. I felt empty. Never before had I felt like such a huge part of me was gone. I knew now what people mean when they say that upon losing someone. I immediately got busy. I had a couple loads of Gram’s laundry that needed done. I would finish that and donate it to ManorCare at some future date. I pressed the new blouse I bought for Gram to be buried in. I wanted it to be perfect. While pressing it, I remembered how Gram taught me to press my own shirts. “Here Mikey, let me do it,” was usually how that ended up. It was a sweet memory and I got so lost in it that I grabbed the hot iron and burned the hell out of my finger.

In the meantime, Michelle went shopping for a red sweater. Gram had told Tara that she wanted buried in the red blazer that her son, Chubby bought her many years ago. We had no idea where the blazer ended up and we knew it wouldn’t fit her anyway, so we decided a red sweater was appropriate, especially since she wore sweaters a lot over the last several years. She could always be seen in one, since she was always cold. We had grabbed a couple purple sweaters from Gram’s room to take to the funeral home just in case Michelle couldn’t find a red one. Gram always looked good in purple.

At the funeral home, I was amazed how technology had infiltrated even funeral planning. Peter, the funeral director sat across from us at the table in what I would call the “showroom.” There were caskets on display and urns on shelves and marketing materials for the many things you could purchase to memorialize your loved one, including a pendant with a fingerprint imprinted upon it. On the wall was a large flat screen TV. Peter walked us through the “wizard” of funeral planning on the screen as he reviewed Gram’s pre-need - now at-need - selections. “Most everything is still good,” Peter explained, “But I want to review things with you.” He did. The casket Gram originally chose was no longer available, but they were able to find a comparable replacement. And there was the question of flowers. “How do you want to handle flowers?” We didn’t know. I did know that Gram always felt cut flowers were a waste. I sent her roses for Mother’s Day once and she said, “These are nice Mikey, but why did you waste your money? They’re only going to die.” Peter suggested live plants that could be given to family members at the end of the viewing. Michelle and I agreed upon Mums. They were perfect because they were fall flowers and abundant right now. Plus, for many years, Gram was known to everyone as “Mum.” It was a perfect choice.

I handed Peter the white blouse I had bought and pressed. “Please touch this up,” I asked. “It must be perfect. Gram was a presser. She wouldn’t tolerate any wrinkles.” Peter graciously and gently obliged with a nod. Michelle also brought a couple different red sweaters she bought. We chose the one we thought would be perfect.

I can’t say that I was fully present during all of the discussions regarding the arrangements. For that reason, I was so grateful that Gram had asked me to take her to pre-plan and pre-pay everything all those years ago. Back then she even bought her headstone. All we had to do was commission the scroll that would contain her date of death. It was already paid for; it just had to be placed. The funeral home would handle this, too. Gram really took good care of me.

                                                                                                                                                                

Michelle had talked with Tara and they were on their way up from Virginia. They would arrive Monday night. We would all plan to meet at the funeral home Tuesday at 1:45 for a family viewing before opening to the public.

When I arrived back home, I wanted to be alone. I didn’t want to talk to anyone.

I posted the following on Gram’s Facebook page: At approximately 4:45 this morning, Gram peacefully succumbed to her disease. We are so grateful for the love and kindness Gram experienced in her last years.

I slept well that night.

The Final Journey, Part 7

Sunday October 9

I arrived early in the morning again on Sunday. Gram was resting peacefully now; her breathing was still heavy and deep, but that was characteristic of her when she slept. She always slept with her mouth wide open, too, but today there was a stiffness about it – as if it was stuck that way – like she couldn’t close it if she tried. The end was drawing near; I knew this. And at this moment, more than ever, I found myself drawn to her just as I was as a child – longing to be close to her for comfort and strength. It was ironic that someone who was now in such a vulnerable state could still provide me that comfort and strength. But it was her true essence – her soul or spirit, more so, that provided me with what I needed now, not her physical presence. Her essence was still very much here and that bond - that ever so amazing bond we shared - drew me to her. It did now as it did all those years ago being a troubled child growing up in a crazy household. Whether it was fear of a nightmare, a monster under my bed, or thunder, she was always there to comfort and reassure me. It’s an untouchable but real force.

I can’t remember exactly who worked what shifts that day at ManorCare, but I know at some point, Tracy was Gram’s nurse. I didn’t know Tracy well, but she knew Gram of course - everyone did. I had talked to her on the phone a few times over the years when Gram fell, injured herself, or got mixed up in some type of trouble. What I do remember is that day was filled with lots of kindness and compassion, much of which came from Tracy. She was very kind and attentive.

Throughout the day, too, just like the day before, there were visitors – other staff members and residents, paying respects, saying good-bye. There was even one young lady, Resa, who no longer worked at ManorCare, but wanted to come and say good-bye. “I took care of her for two years. Of course I wanted to say good-bye,” Resa said.

I sat with Gram all morning. It was peaceful and calm and quiet in room 141. Nurses and aides came in throughout the morning to check on Gram and me. They asked if I needed anything and once again, wheeled in a cart full of drinks and snacks.  

I found solace in the quiet of the room and the perfect rhythm of Gram’s breathing. It relaxed me and allowed my mind to wander. Memories flooded my mind and images of my life with Gram flashed before me as I took an emotional journey backward. Some memories made me smile and others made me cry, but they all made me thankful – thankful to have known Gram and thankful to have been a part of her life.

I recalled Friday night at the hospital and remembered how making the decision to not proceed with the transfusion made me oddly calm and at peace with things. I still was. I knew now that I was losing Gram and I was ok with that for her sake. I knew I had done right by always her by putting her first, considering what was best for her, and doing my best to represent and advocate for her when she couldn’t. I had no guilt; no regrets. I did, however, have deep sadness.

What I wasn’t at peace with, however, was what would happen to me after. I had never been able to imagine my life without Gram and soon I would be living that life. What would become of me? What will I spend my time doing? I thought. I hadn’t allowed myself much time on these thoughts because it hurt to do so. Furthermore, I needed to be present for Gram. I wanted to experience every moment of this process with her and not miss a thing. I knew I’d be ok, though; Gram taught me how. I’d be sad and lost for a while; I’d have to take things one day at time. But notwithstanding my need to focus now, I couldn’t deny that the strong, brave, front I was putting up for Gram was being challenged constantly by underlying emotions regarding my future. They pinged at me and despite my best efforts to fight them, would surface at times and I’d find myself sobbing. I cried a lot that week.

I left ManorCare around lunch time. Gram was despondent and appeared unconscious as she had been since Saturday. I needed to buy her a new long-sleeved, white, button-down blouse for her viewing and I became driven to do so. I wanted her to be in white and it had to be crisply pressed. Being a presser, she wouldn’t have it any other way. Even at home, she always pressed her blouses and looked neat. In my search, I went to Kmart, Target, Kohl’s, and Walmart before finally finding what I wanted – the perfect blouse. I took it home and washed it (Gram always said you should wash new clothes before wearing them.) I would press it tomorrow.

When I returned around 3:00pm, Tracy stopped me and called me to the nurse’s station. “We were trying to get a hold of you. If there are other family members you want to have here, you may want to call them.” I already knew what was happening, but hearing this made it, again, very real.

Gram’s blood pressure had been dropping and her pulse increasing. Throughout the afternoon, her breathing had slowed and become shallow and erratic. Between each breath, there was a 15-20 second pause.  For some odd reason, I recorded Gram’s vitals throughout the morning.

10:15 am: Blood pressure 80/40, pulse 116

11:30 am: Blood pressure 103/50, pulse 99

I contacted the family. Michelle came over and Paul and Aubrey and Andrew came later. I suggested that Heather and Mom not come because they had a long drive and at that point, I didn’t think they’d make it before Gram died.

We all sat together and we waited.

At 9:00pm, Gram’s blood pressure had dropped to 60/30 and her pulse was 114. And at 10:00pm, her blood pressure was around the same.  Her blood oxygen had dropped to 86%, despite the concentrator. The nurse turned up the oxygen, knowing that it would make us feel better.

Sandy, the night shift nurse came into the room, introduced herself, and immediately asked if we needed anything. We didn’t. “We’re going to take good care of Gramma,” she said. “Thank you,” I replied, welling up with tears. (The expression of love and compassion that I experienced from the staff at ManorCare touched me in a way that I was often brought to tears. “You do God’s work,” I’ve often said to them.)

Michelle and her family left after 11:00pm. “You should go, too, Mike,” Michelle suggested. “I’m not going yet. I’ve been with her for this whole journey and I want to see her through to the end.”

After Michelle left, I sat next to Gram’s bed, which was slightly raised at the head. In that position, I was able to somewhat comfortably rest my head on the bed next to hers, while sitting in the chair next to her. Gram’s breathing was very slow now. Every inhale was long and slow and after each, there was a long delay. I anticipated every corresponding exhale and wondered if it would be the last. I tried to sleep a little, but couldn’t. I dozed off, but quickly awakened. I didn’t want to miss the end. This went on for the next few hours. Periodically, I’d check Gram’s fingers and toes and they had become cold, and bluish in color. Sandy was in and out administering the meds and checking on her, too. Around 2:00am, as Sandy was giving Gram her meds, I raised my head from the bed to hear her say, “Her breathing has stabilized.” I looked at Sandy in a confused and surprised way. I had been told by hospice nurses before that often the dying don’t want to die in front of their loved ones. I know this was the case with Chubb’s when he waited for Michelle to leave and within minutes took his last breath. I didn’t expect it with Gram. But then again, she always protected me. I looked at Sandy and back at Gram, who, just as Sandy said, was breathing normally – as if she were sleeping in her normal way. “I think I’m going to go,” I said immediately as I realized what was happening. “I don’t think she wants me here.” I believed even now, Gram was protecting me. I gathered up my things, dimmed the light in Gram’s room, and left.

When I got home, I logged into my computer and there on Gram’s Facebook page, was a lovely, touching tribute: Tracy had posted a photo of several of the ManorCare staff members conducting a toast using a caffeine drink – the same drinks that Gram loved to steal from them. The caption said, “Cheers to Gram Berberich. We love you!”

I wept.

The Final Journey, Part 6

Saturday October 8

The walk through the front door, into the elevator, and down the hall to room 141 was particularly long this Saturday morning. I wanted to get there quickly, but at the same time, was terrified for what I was going to find. I was still reeling from the anger over the hospital keeping Gram waiting over twelve hours for an ambulance to bring her back and then releasing her without calling me. My emotions were piqued.

Two women staff members saw me as I walked into Gram’s room. Gram was lying in her bed in the same fetal position she was the night before at the hospital. Her eyes were still half open and pasty. Her breathing was deep and heavy. She was wearing only a hospital gown and a diaper, which was exposed because the blankets were partially pulled off.  Did they just toss her there? I thought to myself. As I moved to cover her, the two staff members walked in and quickly took over. I didn’t know these two women well, but they sure knew Gram. They were night staff, I surmised.  They took control of the situation with a sweet gentleness and conviction that touched me to tears. I stepped out of their way. “Let’s get her into her PJ’s,” one said, more to the other than to me, as they frantically and dutifully positioned Gram to change her. “Gramma isn’t Gramma without her PJ’s,” the other said. I left the room to allow them privacy. As I walked out, I heard one of them say, “We can’t have her like this, Gramma runs this place.” Even teary-eyed, I couldn’t help but to chuckle under my breath.

Shortly after the two women left the room, the ManorCare nurse came to check on Gram and took her vitals. She asked if I needed anything. “No, thank you.” I said. Gram looked so much warmer and comfortable now that she was in her PJ’s. Those women were right; she needed to be in those PJ’s.

Michelle came shortly after I arrived and we sat with Gram throughout the early morning. We reminisced. We laughed. We sat quietly at times. We were sad and there were moments of tears. There was disbelief – lots of disbelief – this was all happening so quickly. But this time with Michelle and Gram was special to me. Through these years of Gram’s illness, it had been the three of us. So it was appropriate that it was the three of us now.

As the morning went on, Gram became increasingly restless. I grew impatient waiting for the hospice nurse, Tonya, because, as brave as I was trying to be, the restlessness was difficult to watch. I felt helpless. The random arm movements weren’t as bad as the grasping and rubbing of her head she kept doing with one or both hands. It was similar to what one might do when suffering from a severe migraine. I didn’t want to think she was in pain – I couldn’t bear it. I’ve experienced migraines and I know that pain well. I didn’t want to think it.

Gram was repeatedly grasping the edge of the blanket, too. As I watched her do this, I flashed back to childhood when I used to do a similar thing. I got comfort from the nylon ribbon they used to put on the edge of blankets - its cool softness was soothing and felt good between my fingers, on my face, and on the tops of my feet. I would bunch it up in my hands and rub it against my face. I would position my feet in such a way that that nylon would slide across the tops of them. It calmed me and at the same time distracted me from the bad thoughts. Now, I was hoping it was doing the same for Gram.

I knew once Tonya arrived, she would get Gram started on Morphine and Ativan. The Ativan would help with the restlessness and the Morphine with pain, if she was having pain. When she did finally arrive around 11:00 am, shortly after Michelle left, she quickly ordered both medications.

Within a couple of hours, the meds arrived.  Once they did, though, someone dropped the bottle of Ativan and it broke and spilled all over the floor. The original pharmacy didn’t have any more so they had to seek out another one. In the meantime, they began administering the Morphine, but it only calmed Gram slightly - mainly because it put her to sleep. It was something, though, while we waited for the Ativan, and I was thankful for it.

In the meantime, Mom and my brother, Bill, and sister, Heather, and her boys, Kody and Zach, arrived around noon right after Michelle left. Jude came later, too. I was happy to see Bill come. Bill is my oldest brother and losing Gram was going to be at least as difficult for him as it was for me, probably more. Over the years, Bill couldn’t seem to handle Gram’s disease and slow decline very well, so he didn’t come around much. Over the last few years, though, he had bravely begun to come for our holiday gatherings and I was happy for that. Bill was Gram’s real favorite, even though most assume I was. I had no issues with their relationship, at least since I became an adult. They had a very special bond. And now, more than ever, Bill needed his time with Gram - his chance to say good-bye. Gram did, too. She always worried about Bill and loved him deeply.

The Ativan finally arrived around 3:00 pm. The nurse began administering it immediately, but the effect was not immediate. I expected it would take a couple doses to establish the proper amount and get it built up in Gram’s system before we’d see the results.

Throughout the day, most of the entire family would make their way to see Gram. Jude, Mom, Bill, Heather, Kody, Zach, came early. Later, my sister Michelle, her husband, Paul, and their kids, Andrew and Aubrey, would also come. Additionally, there was a steady stream of staff and other residents who stopped by Gram’s room throughout the day to express well wishes, say goodbye, and offer a prayer, a story, or even a gift. Cynthia, a resident, offered a page from a coloring book she colored specifically for Gram. It was accompanied by a letter she wrote. “I heard you’re getting ready to break my heart,” the letter started out. “…Believe me they’ll be a lot of others, too. Everyone loves you so much. Like the beautiful blue skies open up to you. I love you honey. You earned your peace and are saved by grace.” Cynthia cried when we told her of Gram’s condition. Kevin, another resident, came by and asked the family to join as he said prayer for Gram and for us.

As each shift ended, staff members that were finishing came to say goodbye to Gram. They didn’t know if she’d still be there for their next shift. Some of those moments were more poignant than others, such as when Chris, the tall, young aide, who always took such good care of Gram, came in, got down on his knees beside her bed, lowered his head next to hers, kissed her, and said, “I love you Grammy.” I tried to hold back the tears, but could not. How nice that Gram was surrounded by such love.

As I sat at her bedside throughout the day, there were times that Gram would reach for and grab my hand, pull it toward her, run her hand up my forearm and back down, and then squeeze my hand. Then she’d push it away and repeat the process. Once again I was taken back to my childhood, to her comforting me during the nightmares I used to have. I hoped, now, I was doing for her what she did for me back then. She provided me great comfort during those scary times as a kid.

Heather, Mom, Bill, and the boys left around 5:30 pm. Gram hadn’t opened her eyes at all Saturday, but when Bill leaned over to say good-bye, she opened them. She only did it for him and he spoke of it as he walked out, “I think she was trying to say something to me.” Perhaps she wanted to see his face one last time. She didn’t see him often. Perhaps she wanted to say I love you.  

Jude stayed with me well into the evening. She was a huge support for me and I was glad she stayed. Michelle came back minutes after Mom and Heather left. Michelle’s husband, Paul, and their kids, Aubrey and Andrew, came later. Gram was still somewhat restless when Aubrey and Andrew arrived and they were concerned. I didn’t tell them what happened to delay the Ativan, as I didn’t want to further upset them. By now, the Ativan had helped some, but it hadn’t reached its full effect. Aubrey and Andrew also expressed concerns about Gram’s breathing. It appeared belabored. Her mouth was wide open, as it always was when she slept, but today, that aided in the appearance of a struggle. Tonya told me earlier that she was not struggling to breathe but it was typical for families to think otherwise. Nevertheless, we expressed our concerns to the ManorCare nurse, who, without hesitation, brought oxygen. Tonya may have been right. It didn’t seem to ease Gram’s breathing at all. We felt better, though.

Again, we sat and reminisced. We told funny stories. We sat quietly. We wondered. Again, there was disbelief. I mean, just four days earlier, she was still wheeling around. She had just said to me Wednesday night, “I have to get the hell out of here.” Although her words were disjointed Wednesday, she still had some of that characteristic spunk that endeared her to so many. But now, she lay lifeless. None of us knew what was going on in her head. I only hoped it was peaceful preparation for her transition. I hoped that those she loved that had gone before her were reaching out to assist with her journey.

I learned that evening what NPO meant and it was a harsh lesson in reality. I was asked about Gram being “NPO.” I Googled it: NPO is short for the Latin, nil per os, which means ‘nothing through the mouth.’ I knew Gram hadn’t urinated or had a bowel movement in at least twenty four hours and I knew she wouldn’t and now, couldn’t, eat, but hearing NPO and learning what it meant made the finality of things painfully real – this was the end.

I also experienced first-hand what I had read about and I hoped I never would – that is, how often Alzheimer’s patients die of starvation because they lose the ability to swallow. I believe it’s called Dysphagia. Gram was starving to death as we watched and she had been over the last months – slowly, but definitely. But today, as the nurse, Ang, came to administer the meds from the oral syringes, I understood well what losing the ability to swallow meant in the final stages of this disease. And it was horrifying to watch. The medication was to be placed under Gram’s tongue and absorbed there. Naturally, though, some drops would dribble down her throat, which by now was so dry and brown that the tissue and dried up, pasty saliva looked like stalactites hanging from a dark cave. When some of the medication hit Gram’s throat, she would immediately go into a spasm - mouth wide open, shoulders tensing, head bobbing forward, in a clear struggle to swallow. It looked as if it was purely reflexive and without all the muscles actually working to push those few drops down. This seemingly automatic, but not actually functioning, attempt by her body only caused her to gag and let out strained and raspy weak, shrieking noises that originated from deep in the back of her throat. I’d place my hand on her back and lift her to an upright sitting position as I rubbed her back and neck in an effort to help. And as I looked over to Ang, sitting across the bed from me, I’d see the big tears in her eyes that spoke to the helplessness that we were both feeling at that moment. It would only end once the drops were able to finally pass beyond Gram’s throat on their own. By Sunday, these moments had stopped, thankfully. They were the most difficult part of the whole dying process to watch.

Later in the evening, after Jude left and when Michelle and her family left, I left also. I had to go home and take care of my dogs. Gram was resting more comfortably. I would return later.

By the time I returned later that night, the meds had fully kicked in and Gram was resting peacefully. It was probably after 9:00 pm when I walked into Gram’s room. I found Stefanie and Monica, two of Gram’s favorite aides, sitting with her. They had cleaned her up and finally got her positioned from fetal to lying on her back. Her arms were no longer moving; rather they were resting over the blanket that was neatly folded and covered her to her waist. She looked peaceful. Her mouth, of course, was wide open.

Stefanie and Monica have always loved and taken such good care of Gram, so those quiet moments of them sitting with her when I arrived, were some of the most poignant that I will remember.  The room was dimly lit, which provided a softness and solemnness to the experience.  They were sitting quietly. And when they spoke, they spoke softly as if not to wake Gram. “This place won’t be the same without her,” Monica said. “No, it won’t, “added Stefanie. I was profoundly touched.

Tonya came back, too, to check on Gram. Tonya explained what Gram had been experiencing earlier. “It’s called terminal restlessness,” she said, describing the restlessness – the flailing of the arms and rubbing of her head that Gram had been doing incessantly until the medications fully kicked in. “It doesn’t mean anything,” she went on, “They’re just random movements that people experience when they are dying.” She reassured me again that Gram was not struggling to breath or having pain. It was probably due to delirium from the dehydration and severe anemia she was experiencing along with her organs shutting down. Tonya looked at the oxygen concentrator next to Gram’s bed. “Oxygen is for the families.”

Friday was a day of gut-wrenching day of decision-making. Saturday was a day of settling and acceptance, peacefulness, and good-byes. By the end of Saturday, Gram was finally resting and peaceful. Hospice was engaged and providing comfort measures. Sunday would be about waiting.

The Final Journey, Part 5

Friday October 7 (continued)

Adam called for an ambulance transport at 6:00 Friday evening. I was relieved after having made the decision to not proceed with the blood transfusion, but anxious to get Gram back to ManorCare. I had no idea how long it would take. I was emotionally exhausted; it had been a long day already, so I hoped it wouldn't take long. Gram was in a fetal position and resting mostly. I’m not sure if she was sleeping because her eyes remained half-open. She was having periods of restlessness followed by calm quietness.

We waited.

In the meantime, I called Keri from Heartland Hospice. Since we had pushed the Heartland team aside when we decided to pursue the blood transfusion, we hadn’t yet signed the papers to engage them. Keri was patient with us and she graciously agreed to meet us at the hospital while we waited for the transport. 
            Michelle and Aubrey came over, too. It was around 10:00 when Keri arrived. We all sat in the waiting area of the Emergency Room at Passavant and for the first twenty minutes, did nothing but tell stories and reminisce. No papers were signed yet. We laughed as we shared memories of Gram and times gone by. Keri seemed interested in hearing them and touched by the love we were all sharing. These moments- this experience- seemed to signal our shared acceptance of the decision and what was about to happen with Gram. 
            For those few moments, I swear we were the only people in the whole world. I was totally unaware of anything going on around us. It was like the world outside of those chairs we sat in was frozen in time. We all seemed to know now that Gram wasn’t going to surprise us this time.

I signed the papers. We would begin the hospice process as soon as Gram got back to ManorCare. Since we assumed, at that point, it would be after midnight, the agreement was effective the next day, October 8. Technically, it was in about ninety minutes.

When Keri left, I checked in with the nurse. Adam’s shift had ended and a new, not-as-friendly nurse appeared. He told us that Gram wasn’t a priority for ambulance transport and it could be a while. They had, however, contacted their service of last resort and that service was providing an arrival time of 3:30 am. “It might be earlier or later,” the nurse said. I was so frustrated. If Gram would have been just a little stronger, I would have carried her to my truck and drove her myself. My biggest fear was that she would die in that hospital. I didn’t want that to happen. I wanted her to be among familiar surroundings.

We left the hospital at 11:30 pm. I asked two nurses to call me when the transport arrived. In turn, I needed to call Keri and have her nurse, Tonya, meet me at ManorCare when Gram got back so we could begin treatment.

The Final Journey, Part 4

The Final Journey, Part 3

Friday October 7, 2016

I arrived Friday to find Gram’s room full of people. I was taken aback. I was here only to meet Keri from Heartland Hospice and sign the paperwork. I knew Michelle was going to be there because I had told her, but I didn’t expect the others.

Gram was sitting in her wheelchair near the window. She looked so weak and only half awake. Michelle was sitting in front of her. Sarah, one of the ManorCare nurses was standing behind Gram’s wheelchair and Paula, another ManorCare nurse, was sitting on the bed next to Gram. Keri and a hospice nurse were standing against the wall. Paula immediately blurted out, “Mike, her Hemoglobin is down to four. She needs a transfusion. She needs to go to the ER.” I almost fell against the wall. And before I could even process what I had just heard, Michelle chimed in and said, “Mike, you should listen to this before you sign the hospice papers.” She was thinking, and rightfully so, that once I signed, I wouldn’t have been able to get her a transfusion.” (We found out later that hospice would have permitted it.) Sarah concurred with Paula. I could feel the panic and anger well up inside me as I realized the seriousness of the situation. Defensively, I said, “Whoa, whoa, wait a minute, I’m here to put her on hospice, I’m not trying to save her life. I don’t even know what Hemoglobin is or what it means!” I paused, and then continued, trying to remain calm, “I mean, what’s causing it? Something has to be causing it. And I’m not going to run a bunch of tests to find out. Won’t we just have to do it again?” I could feel myself beginning to tremble as I tried to retain composure. I was so confused and words and questions filled my head. In some way, I resented them planting a seed of doubt in my mind. I also had to remind myself that Gram had documented her advance directives when she had her will done several years ago. I needed to do right by her. I was worried about what she would have to endure by going to the hospital. “Think about the experience for her,” I said, “Possibly having to sit at that hospital for hours, shitting and pissing herself. Will they keep her? Will they let me be with her? If not, I won’t do it. I don’t want her to die in a strange place and without me.” It seemed like I had no control over the words that were coming out of my mouth.

I calmed down a little and as we discussed the situation, I learned that low Hemoglobin could be caused by internal bleeding or diet. A normal, healthy level would be twelve. Gram’s previous level stayed around nine. Clearly, four was dangerously low. “Everything I’m seeing with her right now is exactly what someone with low Hemoglobin experiences,” Sarah said, still standing behind Gram’s wheelchair and welling up with tears. “A transfusion will perk her up. I’ve seen it before.”

I’ve always respected and appreciated the opinion of those who took care of Gram, especially those like Sarah and Paula who had been there since Gram arrived. These people took care of Gram every day and, as in the case with these two, often thought of Gram as their own family.

Sarah was in tears as we continued to discuss Gram’s situation and she was pleading with me to consider the transfusion. I would find out later that Sarah was reprimanded by the hospice nurse for crying and being “unprofessional.” Sarah apologized to Michelle and me, but I found it unfortunate that she was reprimanded and unnecessary for her to apologize. I was grateful for her input and I know Michelle was, too.

By now, I knew I was probably going to allow the transfusion because the seed of doubt was planted. I knew that if I didn’t, I’d always wonder if I could have made Gram feel better. Until now, even though I was engaging hospice, I didn’t think her death was imminent. As I had said before, I did think this time was different – that she wasn’t going to bounce back. However, I thought she had a month or so left. “Perking” her up, I thought, would make her feel better for her last weeks or months.

Before making a final decision, I had to make sure that this transfusion was the right thing to do. I asked for a doctor. The ManorCare nurses contacted a nurse practitioner who was on site. She immediately came down to talk to us. She reiterated the possible causes of Gram’s blood condition and also outlined the risks of the transfusion, mainly that she may not survive. She needed so much blood that it could kill her. At the same time as the ManorCare nurse practitioner was discussing the procedure, the hospice nurse reminded me about the poking and prodding Gram would undergo at the hospital. “Is it invasive?” I asked the nurse practitioner. I had no idea how a transfusion took place. I envisioned holes all over her body and tubes of blood flowing everywhere. “It’s an IV,” she responded. “Will it make her eat again?” “It might improve her appetite a little.” She also informed me that the ManorCare test could actually be wrong. “The hospital will do another blood test,” she reassured me.

I walked over and sat down in front of Gram. Opening her eyes seemed like a huge effort for her. She did, though, and she looked at me. Her eyes were long and droopy and looked sad. “Do you want to take a ride?” I said, softly. Gram shook her head and mouthed, “No.” “Do you want to go to the ER?” Her response was the same. My heart hurt for her at that moment. But despite her response, I decided to send her to the ER for the transfusion. I felt like I had to. Again, I was only thinking of making her feel better as she lived out her last weeks or months.

As I walked to the nurse’s station to arrange for the transport, the hospice nurse, who had earlier left Gram’s room, said, “What would your Gram be saying to you right now?” She’d say, “Leave me the hell alone,” I replied. “But I think I could talk her into this,” I said, “One time. I think she’d do it for me.” I directed attention to the ManorCare nurse then and said, “Once we get there, I reserve the right to stop this at any time if I feel it’s too invasive.” “Of course, she replied.” We put hospice on hold and the nurse summoned the ambulance transport.

As the medics wheeled Gram out on the gurney, Michelle and I followed. We were both in tears. A male patient grabbed Michelle’s hand as she walked by, held it tightly, and said a prayer. Another patient, Kevin, quickly wheeled toward us, looking deeply concerned. “What’s going on with Gram?” Once we explained, his eyes welled up with big tears and he said, “We love Gram.” He grabbed Michelle and gave her a big hug.
          What an awful day.

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.