Friday, March 16, 2012

Part 49 – Being Called Home

Continued from Part 48 

Even more than I had hoped it would be, having a crisis nurse from hospice at my parents’ house around the clock was a relative bonanza for my family; it took some of the uncertainty and the heaviness out of the situation and freed up my mom and later my sisters and me from focusing on the medical care needed so that we could settle into our roles in our family, as it was, one last time.  It was such a relief to have the two crisis nurses that came – one from 7 p.m. to 7 a.m. and the other from 7 a.m. to 7 p.m.  – there to provide their expertise and to support and care for us as well as for Dad. For the first time since Dad had gotten sick, we didn’t feel the entries in the Notebook were necessary; in spite of the fact that we had spent so many days with medical staff all around us when Dad was in the hospital and while he was in rehab over the past ten weeks, it was the first time we really felt that someone other than one of us was up to the task of taking the reins in his care.  

Around noon on Tuesday, January 4, when Mom called to tell me that the hospice nurse had advised her to call to let us know that we needed to come home as soon as possible to be with Dad, she said, “This is the hardest call I’ve ever had to make, calling you all home.”  Through the fog of tears, desperation, and (still) at least a little bit of disbelief, though, I was grateful for the chance to come and for the chance to get to be with Dad again; somehow even then I had the perspective that the message of that phone call could have been worse.

On the road to my parents’ house that day, hope and denial were still so entwined for me, although the goal of both had obviously shifted.  My hope was that peace and comfort would be able to be provided for Dad and, truth be told, maybe even that he would need me one last time to play a role in that provision.  

I had read in some of the material the hospice nurse had shared that a person who is dying may sometimes wait for certain people to be with him before he goes on ahead and other times he may wait to be alone.  As much as I selfishly wanted to spent every last bit of time that I could with Dad, I told myself that, just as had been my family’s mission during the course of Dad’s illness, I had to be prepared to do whatever it took to care for Dad, no matter what that meant.  

I remember having to consciously force myself to stay in the moment and to focus on the act of driving on the way to my parents’ house, but I don’t remember what I thought about on the trip.  Denial was really what served as the vehicle that got me to my parents’ house that day; it was the glue holding me together so that I could function at all.  Hearing my mom say that time was very limited, that we needed to come home was like watching the last drop of glue being squeezed out of an already almost-empty glue bottle.  

I parked in front of their house and walked up the steps and in the front door, almost like it was a normal day.  I quickly hugged my mom and then went into my parents’ bedroom.  I saw my dad lying in the hospital bed – it looked like him, but it didn’t.  I could see the outline of his body underneath the blankets on the bed, and I could see his chest slowly rising and falling in a slow rhythm. The true vulnerability of his life could be felt in the room.  A startling thought popped into my head: “This life as we know it is going to end before I am ready. We’ve made it here, and I will do whatever it takes to take care of him, but I will never be ready.”  I remember the complexity of the emotions that were present in that moment, and I can still feel the numbness and the intensity that were so intermingled I could hardly breathe.

I couldn’t really believe it, but here we were.  Everyone had had such faith that he would beat the odds, and I was still surprised – shocked really - that his body that was so strong could not take it.  That we had gotten here this fast, or at all.  That we weren’t going to be the ones to beat the odds.  As I sat down in the hard chair beside the bed and took his hand in mine, I reflected back on the words that Dad had said repeatedly over the last few days when he was in the hospital:  “It’s just too much.”  He was right – despite his best efforts and those of the people who loved him, the cancer and the treatment were just too much.  What was happening was too much, and so was the grief, already.  Unimaginable, even in the moment.  All that was left to do was just to be there with him, to hold his hand and talk to him even if he couldn’t do that back anymore. I am not a touchy-feely kind of person, but, when there was no longer any need to get his favorite foods for him, when there were no doctor visits to schedule, no errands to run, no in-depth discussions to have, and no treatments to seek out for him, using touch to comfort and care for my dad was what I instinctively felt like doing.  Based on his reactions from over the past week or so, we knew that much physical contact or noise would likely cause him discomfort, and so again we followed his lead: we didn’t move him in the bed except when absolutely necessary, we didn’t play music, and we didn’t turn the TV on.  For our comfort and hopefully for his, we took turns lying next to him in the hospital bed or sitting right beside his bed and just holding his hand, sometimes talking to him, sometimes not, seeking that connection and doing what we could to let him know that he wasn’t alone.  

Mom had called my siblings at the same time she’d called to tell me to make my way to my parents’ house; Nancy left work and arrived not long after I did [she actually got a speeding ticket on the way there; not wanting to spend extra time explaining and probably as part of the cloak of denial she was wearing too, she took the ticket from the officer and got right back on the road without mentioning a word about the reason for her speedy driving], and Jennifer, two thousand miles away, booked a flight that would leave the next morning.  Our brother Lee, who lived 800 miles away, planned to fly in the day after that.

Marilyn, the crisis nurse that day, quietly alternated between writing notes in the chart, gently checking Dad’s vital signs, and efficiently administering medications to him, which were all being given in liquid form at that point due to swallowing difficulties.  She was very skilled and very kind; she reminded me of a woman with whom my parents had been friends when I was a child, which seemed comforting.  She asked if we wanted to be alone in the room with him and then considerately stepped into the kitchen for a while when we said that we did.  While Nancy and Mom sat with Dad, I followed Marilyn into the kitchen and asked her, “What can I do?”  I think I meant for Dad, but maybe I meant just in general.  I felt restless and so completely useless.  For all that there had been to do during the rest of the time Dad was sick, I was at a loss for what to do now. Marilyn folded me into a hug and then she told me: “You need to reassure him. You have to tell him he can leave when he needs to.”  Oh, god, how I didn’t want to hear those words, but I knew she was right.  I tried to steel myself for what I knew had to be done and what I knew was going to happen.

A little while later, as I sat quietly with Dad, I thought back to less than a week ago when decisions and plans were hanging in the balance and when Dad, in the meantime, was barely hanging on.  Late in the night on one of the last nights he was in the hospital, he brought up the subject of dying again, this time in reference to a dream he’d had when he was in the ICU a couple of days before. “It was so scary!” he said, and then he replayed the dream for us. In this one, he and several other people were hanging onto a wire by their hands.  A man he didn’t recognize was going down the line of people counting, and everyone in the dream knew that if the man called out an odd number when he came to a person that that person would be dropped from the wire and would die, but if he called out an even number, that person was spared.  Dad said he was so scared that he was going to be “counted with an odd number.”  He said he held on so tightly to the wire because he didn’t want to die because he was so afraid that we wouldn’t know where he was or how to find him if he did lose his grip.

Sitting with him in his bedroom as the sun started to dip below the horizon outside my parents’ bedroom window, I told my dad that he would never be lost.  I promised him that I would take care of Mom and Grandmom and my siblings and that we were so thankful to have had him to pull all of us together as a family.  I carefully put my head on his shoulder, and I said, “You can go.  But you have to come back to me!”  Immediately after those words had left my mouth, Dad started stirring in the bed, moving around and kicking the covers in an agitated fashion.  Instantly I knew without a doubt that he’d heard me, and I was ashamed of the selfishness behind what I knew he thought I was saying.  “Oh, Dad,” I cried, “I know your body can’t do it anymore.  I know you are doing everything you can to stay here with us, but it’s ok if you can’t.  You’ve finished the race; you’ve done everything you needed to do, and we will be ok.”  He settled down again, and I just sat there, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear that too.  I wanted to tell him that what I’d meant was that I hoped he could try to send me a sign, to come and be with me and the rest of the family later, in spirit, but I didn’t tell him that; I didn’t want to cause him any more distress, and so I told myself that he would do it anyway, without being asked, if he could find a way after he’d gone on ahead.

Sitting there with him in that room, holding his hand and watching over him: it was almost an out-of-body experience for me.  Who is this lying so helpless in the bed – it’s not my dad who was so strong, so active, and so full of life.  Who is the girl crying and telling him that she will be ok without him – that doesn’t seem like me, I’m the girl with the pigtails climbing trees or running alongside my dad, and I'm not sure it's true.  It didn’t seem possible, or real.

But it was real, and time was marching on.  The night-shift nurse came to replace Marilyn.  As the night wore on, Mom, Nancy, and I decided to take turns trying to sleep.  It felt odd yet also comforting to have the night nurse watching over us.  Lying with Dad that night, halfway in the hospital bed and halfway at the edge of my parents’ bed, I tried to focus just on Dad’s breathing, but my mind was racing.  I kept thinking about how the many things that usually seemed so important, so urgent, really weren’t at all.  It was the air, breathing, and being together with those we love that were paramount.  I just wanted to hold onto that togetherness for as long as I could, but, even as I drifted in and out of sleep that night, I knew all of that was out of my control, and I felt completely helpless.

When I think back now to that night and to the next day, which would be Dad’s last, I remember him as being so very vulnerable and undefended. Before my dad had gotten sick and before I’d watched his valiant efforts during the time he was sick, I thought those things implied weakness.  But, over the course of the past ten weeks, I had come to understand that it takes true courage to be that way without resentment and rage. In the end, Dad, with his kind heart and his trusting nature, folded himself into our arms, and that, along with holding on, was his final gift to us.

Up Next … Part 50 – Saying Goodbye

Monday, March 12, 2012

Part 48 - I’ll Love You Forever

Continued from Part 47

I’ve heard it said that in some cases when someone is dying he can exercise some control over the time that the going on ahead occurs; the person might have been waiting for something like a chance to finish something, he may need reassurance that those he is having to leave behind will be ok, or he may be holding on until a certain date passes or until certain people are present.  

I think all of these things were true for my dad and that, for as out-of-control as things were during the course of his illness, he was somehow about to commandeer every last bit of strength he had so that, although he couldn't stop what was happening, he could control the timing of things.  I think he needed to check some things off his list, not for himself but for us, and I have never admired anyone as much as I do him for the sacrifice, persistence, gallantry, and dedication that it took in order for him to achieve this.

On the first Monday of 2011, the hustle and bustle of my parents’ house had dimmed, with only my parents and my sister Nancy and her husband David there as the sun came up that day.  There had been almost constant activity, things to do, and caregiving responsibilities since the second Dad had gotten sick.  It still seems odd to me on some level that when his conditioned worsened, when he had gotten to the place that was obviously near the end of that illness, there was actually less for us to do for him.  We were still reeling from the shock of the decline, and thus there was a sense of confusion and conflict within all of us.  Each of us, whether we were physically in the house with Dad or not, strangely had some leftover energy but were at the same time almost completely drained.  Pacing the floor didn’t help, and neither did surfing the Internet for new ideas of things that might help Dad as we had been.  Talking didn’t help and really, among each other, it wasn’t even that necessary; without using words, we knew the pain that each of the others of us was feeling.  As different as we are in personality and in the exactness of each of our relationships with the man we so loved and so still wanted to save, we felt the same blows, the same sense of aching in our hearts, the same feeling of torment as we were realizing that we could not.

Mom, Nancy, and David had split the night shift with Dad, and after she showered and dressed for the day and came back into the bedroom to sit with Dad, Mom leaned over and kissed him and said, “Happy anniversary! I love you so much!”  Dad, who had been lying so still and so quietly in the bed for many hours, opened eyes and looked at her adoringly and then said, “I’ll love you forever.”  Tears followed, as they still do for me even now when I picture this scene in my mind; we were so sad and yet so grateful that he had made through to their 43rd anniversary, and we were so touched by Dad’s efforts to convey his final message to Mom.

David and Mom stayed with Dad while Nancy went to work that day.  I have no doubt that Nancy was operating on auto-pilot, as was I at my job.  It was only due to the shield of the disbelief that any of us were functioning at all at this point, I think.   

Dad's case had been primarily assigned to a hospice nurse named Dave, who came to my parents' house mid-morning that day and spent a long time going over the details of Dad’s care with Mom and then gently examining Dad, changing Dad’s clothes and the sheets, all while talking to Dad very compassionately.  Dave again emphasized “staying ahead of the pain” with the medication schedule and then said that he would check with Mom again later in the day.  

Those of us who were not at the house were anxious and worried; Jennifer and I both spoke briefly to Mom after the visit from hospice that morning, and, although she reassured us that everything was being taken care of there, it was harrowing to feel so out of control and out of the loop.  Early in the afternoon, I called Dave from Hospice, who essentially repeated what Mom had told me a little earlier: we were in a holding pattern of sorts.  Like the hospice nurse from over the weekend, Dave was making no time predictions, but he did not mince words about Dad’s condition, which, for as hard as it was to hear, I was grateful for the directness of.  I told him that I was so worried about the stress of what was going on at my parents’ house, that we were standing by to come back to help and to be with Dad but that, because of the uncertainty of time and what would be needed for Dad on down the road, we just weren’t sure what to do.  After we had talked for several more minutes, Dave said that the hospice company could send in LPN’s on 12-hour shifts to stay at my parents’ house around the clock.  “We often do that when a family feels they are in crisis,” he said.  

I didn’t want to be a family in crisis, but I felt we needed the help or, more specifically, the guidance, the expertise, and the reassurance of someone with knowledge about what to do in a situation like ours.  “That would be great,” I told him, and I knew Mom and my siblings would agree.  We weren’t usually the type to ask for help, but there was no denying that we were struggling, and, as we had been during the entire course of Dad’s illness, we were willing to do whatever it took to care for Dad.  Dave said he would make arrangements for the first shift-nurse to come to the house at 7 p.m. that evening, and I felt a weight being lifted from my shoulders.  It wasn’t what we wanted – none of this was – but it was part of our perspective about what needed to be done, part of sticking together as a family, and part of loving and caring for Dad.

To be continued ... Part 49 - Being Called Home