Remembering Kenneth: A Countdown of His Final Week

[lcoxwell]

Exactly two years ago today, my Kenneth came home from the hospital for the very last time. He managed to hold on for one more week after that, and then he was gone. Earlier tonight, I tried to find the posts from those early days, when I first lost him, and the posts I had made counting down the week before the one year anniversary of his death. I wanted to be able to remember all those tiny little details that time and distance seem to rob from us and to once again remember him by coming here to write about his final week. Sadly, those posts are gone, and I will have to try to do this without some of those tiny little details. I only hope that I am able to truly say what I want to say, how I want to say it, in a way that will truly honor him.

 

My memories of March 3, 2014 shall likely always be filled with a mixed bag of very intense emotions. For years, Kenneth had beaten the odds time and time again, living far beyond what specialists and medical personnel had predicted. In those last few months, there was an imperceptible change; however, and I knew that time was running out.

 

March 3rd was on a Monday. I was in the middle of teaching one of my classes, when I received a call from the hospital. Kenneth's doctor had signed discharge paperwork for Kenneth to either go home or to a long term care facility. The hospital did not have a bed lined up for him to go to a long term care facility, and his home health nurse had informed them that she could no longer work with him, as his needs had progressed beyond the scope of services that she would be able to provide. Essentially, the hospital was expecting me to pick him up, without having any kind of after care lined up.

 

A state of panic completely overwhelmed me, and I remember crumbling into a ball of tears in the hallway outside my classroom. I reminded them that if home health was refusing to take on his care, because he was beyond what they could do, then I was seriously concerned about my ability to take care of him. I was so desperate, pleading with them to find someone who could help me. My mind bounced back and forth between panic and desperation and fear and anger; and the whole time, I remember thinking that I could not leave work to handle any of it, because I had already used up all my sick days and vacation days on all the other times I had to take off due to his hospitalizations.

 

Eventually, through multiple phone calls back and forth and through many, many tears and much begging on my part, the decision was made to transfer Kenneth to a long term care facility near where we lived. At the time, I thought I was making the right decision, because it would allow me to visit him each and every day. The other option was a facility that was about three hours, or more away, and would only allow me to visit for short periods on weekends. To this day, there are times when I am tortured by guilt over that decision. There are times, when I think he could have lived longer, if only I had sent him to the other place instead.

 

Within just a few minutes of Kenneth's arrival at the long term care facility near where we lived, before they had even checked him in, they were calling to tell me to come and pick him up. They said he would not comply with the rules and could not keep him. Although I had medical power of attorney, they said he was coherent enough to make the decision to leave and they could not force him to stay.

 

And so began our final argument. For the next several hours, we sat outside in his truck as I cried and I begged and I pleaded and I yelled, hoping against hope that he would agree to go back inside. That whole time, he tried to make deals and empty promises to come back later, if I would just let him go home. I tried calling his son, the only person in life he would truly listen to, in hopes that his son could talk him into staying. Instead, his son told me to take him home. I remember feeling so betrayed. In my hopelessness, I even tried calling the police, in hopes that I could get them to at least admit him for a psych eval. After all, he knew that going home was paramount to a death sentence, and yet he was still making the choice to go home. Couldn't that be considered suicidal?

 

In the end, I reached a point where I couldn't argue anymore. Many years ago, I had promised that, when the time came, I would try my best to make sure he was able to die at home. As we left the parking lot that night, I knew that he would be going home to die, and I was so very angry at him. I just knew that if he would only agree to stay for a couple of weeks, he would start feeling better and I would have him with me for a while longer. Our daughter's wedding was planned for later in the year, and I knew he was making the choice to die and not make it to her wedding, and I was so, so angry at him for giving up. At the same time, I was angry at myself for not sending him to the other place. If I had sent him there, he wouldn't have been able to leave quite so easily.

 

As we were preparing to go to bed that night, Kenneth wanted me to know that he could see how hard everything was on me. He told me he was tired of hurting and that he wanted to die. He also told me that it was time he quit fighting to stay alive, so that I could move on and have a life. I'll be honest, I have blamed myself for his death, at times. As I begged and pleaded for him to stay in the hospital, in my frustration, I told him that I couldn't do it anymore. I told him I couldn't possibly take care of him alone. I was trying to convince him to stay for just a little while, not permanently, just long enough for me to be able to find help. Sometimes, I worry that he thought I was giving up on him, so he decided to give up, too.

 

Realistically, I know that isn't true. For a long time before that night, he had been saying he was ready to die. He had said his goodbyes to my family weeks before, preparing them to help me deal with things, when the time came. But in my irrational grieving mind, there are times, when I can't help but think, if only....

[canadiangirl]

I read this, you honour your Kenneth and always have.  You did the very best you could, and of course he knew it. 

 

I am so sorry to hear of your lost files, but with the computer world, it is rare that something is totally lost.  Maybe someday when you are up to it contact a computer specialist - perhaps the lost files can still be retrieved. 

 

Take care, sending virtual hugs.

[Trying]

These are such difficult memories to relive but you did everything for Kenneth that he needed and wanted and more.  Allowing someone the dignity of choice at the end of life is such a gift but giving that gift comes with a heavy emotional price.  I hope you recover your lost files because they are important to you but I want to share a thought, maybe some memories are supposed to grow a little fuzzy over time.

 

Sending you big hugs.

[donswife]

sending you a hug

I hope in your mind and heart you know you did everything you could

sounds impossible I know but this is my wish for you

take care

 

 

[Wheelerswife]

As another long term extreme caregiver, I really do understand this.  Reliving the end of their lives is so painful, but for me, it seemed necessary.  I eventually came to integrate the experience.  I don't think there is any "easy" way for people who have had long term chronic and debilitating conditions to gracefully exit this world.  They either have to give up trying to stay alive, or be subjected to more painful and exhausting treatment.  The burden of care falls on someone else...you and me.  My first husband also made the decision to quit fighting, and he did that while critically ill in the ICU.  I realized then that he probably didn't have much chance of making it through the proposed treatment plan, and if he did, he would have an even more compromised quality of life, which was, by this point, already very dependent and uncomfortable at best.  I wasn't forced to take him home, though.  His life ended a few days later, still in that ICU bed.

 

Hugs to you as you get through the upcoming days and past the second anniversary.

 

Maureen

[Mrskro]

No words  just HUGS!

[lcoxwell]

I swear I will not do this every year, but I do want to continue the countdown of Kenneth's final week one more time this year. In part, I feel I need to do this for myself, since I lost the files where I had written down the memories from that final week. I don't want to lose any more of the memories, so I am trying to record what I can. In part, I also feel as if I need to do this for him. Next year at this time, I will be married to someone else and will no longer be solely his (not that I am now, really, but there is some symbolism here, even if I can't explain it the right way).

 

Exactly two years ago, on Tuesday, March 4th, any false hope or thoughts that Kenneth might just possibly honor his promises from the night before were completely shattered. I had gone to work that morning, as usual, and left his sister at home with very clear directions to make sure she got him to dialysis, no matter what. I reminded her and him of the time he was supposed to be there before I left to go to school. In the middle of my classes, I stopped teaching in order to call and make sure he hadn't fallen back to sleep. I arranged for a taxi to pick them up, since she wasn't able to drive.

 

Thirty minutes before they were supposed to leave the house, she started interrupting my class with phone calls to say that he was refusing to go. I was supposed to be teaching, but instead, I was arguing with her and becoming angry with both her and him, for their excuses and their refusal to just do what they had promised, and for their interruptions while I was trying to teach. So many emotions went through my mind, all at the same time. I was furious at her, and at him. Had I been at home, I would have drug him out of the house in his underwear, if I had to. If one of our sons, our daughter, or her fiance had been there, they would have made sure he had gone. But, they were all in other states and couldn't be there to help me take care of him.

 

The reality was, his sister did not want to be bothered with going to dialysis and having to sit there with him for four hours, and he knew it. He knew that if he refused or called her names or threw a temper tantrum, she would just walk away. And I was stuck at work, completely unable to do anything at all about it. I couldn't leave, unless I took time off without pay. If I did that, there wouldn't be enough money to pay rent and buy groceries. I felt completely helpless and frustrated and bitter and so very, very alone.

 

Hopelessness filled the pit of my stomach, as I came to the realization that there was no possible way I could keep him alive, unless I had real help from someone, who could make sure he went to his doctor appointments and that he went to dialysis when he was supposed to. Who else, besides me, would be willing to put up with his verbal abuse, though? Who else would be willing to fight for hours, just to convince him to do what needed to be done to keep him alive? Who else would be able to find ways to sneak his pills from one bottle to the next, to find various hiding places around the house, and to slyly place just enough pills in the bedside bottle for the next dose, so he wouldn't know he was no longer in control of his pills?

 

Devastating reality hit me, as I had to make the painful decision to go to his doctor that day and explain the reality that I had no options. Kenneth refused to go into long term care. Home health refused to come to the house and treat him. There was no money to pay for full time nursing care in the home. I was all alone, with not one person to help me, other than my 17 year old son and Kenneth's sister (who was essentially useless). To give my son credit, he helped all he could, but there is only so much a 17 year old should have to be responsible for. As it was, he had transferred to an alternative high school the month before, so he would get home from school earlier in the day. He stayed with Kenneth every afternoon for a few hours, until I finished up at work and made it home. My son can be credited for saving Kenneth's life on a number of occasions, due to his vigilance and keen sense of when to call for an ambulance.

 

On March 4th, I asked Kenneth's doctor if it was time to call in hospice, and he told me it was time. I had known the moment would eventually come, but sitting there, hearing those words, realizing that time was running out, I suddenly just went numb. Everything felt so unreal.

 

Kenneth and I spent hours talking that night about so many, many things. He made it perfectly clear that he wanted to die, of that, there was no question. He made me promise, multiple times, that I would find love again. We talked about the kids and the grandkids, and we talked about our love for each other. It was such a wonderful, intimate conversation, but in the back of my mind, there was this numbness and this repeating thought of he's dying, he's dying, he's dying.....

[Wheelerswife]

I'm listening.

 

Hugs,

 

Maureen

[Trying]

I also had the gift of similar conversations with my DH when he got the chance to tell me exactly what he wanted and nothing was left unsaid.  I am glad you had that opportunity with Kenneth, a small bit of light during your darkest hours.

[Guest TooSoon]

I'm glad you are taking this opportunity to let out what you clearly need to let out.  My story is not so different and I understand and validate all that you are saying.  I firmly believe that there comes a time to let it go.  You did everything you could in an impossible situation.  I still struggle but I have moved on from that place (3+ here).  Being a solo-parent and still in the house we bought just months before the nightmare began still plague me but these are things I can't change right now.  I hope that you will find a way to let it out and then let it go.  We fulfilled our end of the bargain.  Lots of love. 

[lcoxwell]

Continuing the countdown of Kenneth's final week, on Wednesday, March 5, 2014, five days before Kenneth died, we met with home hospice. Below is what I posted a year ago about my memories from that day:

 

Exactly one year ago today, was when my Kenneth and I met with the people from home hospice for the very first time. During that meeting, he had to tell them that he no longer wanted life-saving medical treatment. I had to hear him say he understood that stopping the treatment meant he was going to die. He then looked over at me, with a smile on his face, and said to the hospice workers,"I wanted to die a long time ago, but my damn wife wouldn't let me."

 

I remember smiling back at him, and I remember fighting back the tears. A part of me wanted to beg him, plead with him, not to give up, to hang on a little while longer. I didn't, though, because I knew he had been fighting and beating the odds, for years. I had watched him rocking in pain and I had sat by his side through one hospital stay after another, for years. For years, I had seen him lose bits and pieces of himself, both literally, through multiple amputations, and figuratively, as the chemicals in his brain slowly robbed him of his cognitive abilities.

 

So, while every part of me wanted to run away and pretend that his life wasn't ending, I instead stood by his side. I knew he needed me, and he needed my support, so that's what I gave him. I held his hand, I smiled through the tears, and I learned what I would have to do to keep him comfortable in his final few days, and to help him die peacefully, at home, where he wanted to be.

[sojourner]

Tears.  :'(

[lcoxwell]

May 6, 2014, just four short days before Kenneth would take his final breath,  would be the very last "normal"  day he and I would ever spend together. Looking back,  I wish that I could have taken those last few days off from work,  so that I could have had more time with him,  but maybe it is best that we carried on our normal routines.

 

That day,  I got up and went to work, as usual.  Except,, that day I knew the end was very, very near, and I spent my day making preparations and emergency lesson plans, knowing that those plans were going to be needed within the next few days. After work, I went by the grocery store and picked up a few things,  then cooked his favorite dish for dinner. We watched TV and spent the evening talking about anything and everything, then went to bed as usual.

 

In the middle of the night,  he woke me up,  as he had done so many times before,  because he was restless and having trouble sleeping. Only that night,  I, new it wasn't like all the other nights.  The night,  I knew that it was one more sign that the end was near. And that night,  I cried myself to sleep,  knowing that soon,  he wouldn't be there to wake me up anymore.

[Jen]

((((((HUGS)))))))

[lcoxwell]

Two years ago today was the last day that my Kenneth was able to carry on an intelligible conversation, though he slept most of the day and was only awake for a couple of hours that night. During those few hours, we talked about our kids, our life together, and how much we loved each other. He was worried about my future, and expressed his desire that I not spend my life alone, mourning his loss.

 

When I think about that final week, I am often shocked at how many times he brought up my future and his desire that I not spend my life mourning him. He was absolutely obsessed with my future happiness. I cannot tell you how many times that week that he grabbed my hand and looked deeply into my eyes, refusing to let go or look away unless I promised him, over and over again, that I would not spend my life sad and alone. At times, it was a desperate plea that I would not let his death destroy me. At other times, he turned it into some seriously sick and twisted humor about waiting until after the funeral before I started dating; or telling me that, if I had him cremated, to please remember to stick him in the closet if I had a man over, so he wouldn't have to watch.

 

Even though he had slept most of the day, as with those in end stage renal failure, he tired easily and wanted to go to bed early, about 9:00. One of the last good memories I will ever have of him is of getting ready for bed that night. I had new shorts and a t-shirt to sleep in, and he smiled when I put them on, telling me I looked really good in them. He couldn't get his hands to work to turn off the light on his side of the bed, so I had to reach across him to take care of it. When I reached across him, he patted me on the butt, smiled again, and looked down my t-shirt. He got that old twinkle in his eye, which he hadn't had in a while due to being so sick. Then he kissed me and said he loved me and we settled in to go to sleep. I always loved that twinkle in his eye, that look that said there was someone in this world that loved me, that wanted me, above all others. It was a beautiful thing, and I shall always miss that twinkle of his.

 

In the middle of the night, he woke up and was very restless and confused. Several times, he fell to the floor, and I had to get up and help him back into bed. Historically, that had been a sign that soon, he would fall asleep and I would not be able to wake him up. So many times, I had called the ambulance to take him to the hospital at that stage, and he managed to pull through; but I knew that there would be no more calls for the ambulance, no more pulling through that night, or ever again. I didn't want his final day or two to be sad, so I tried to hold back the tears, as best I could. Instead, we laughed, as I struggled to get him back into bed, and as he struggled ineffectively to help me.

 

He had such a wonderful laugh. It was one of those laughs that made the world laugh with him. Some days, I wish I could have held on to every moment of that night forever.

[Wheelerswife]

Hugs....

 

Maureen

[lcoxwell]

As the countdown to Kenneth's death two years ago continues, I cannot believe that I am now down to two days before he died. Since I am medicated from yet another migraine, at the moment, and having difficulties with putting my thoughts together, I will share what I wrote last year at this time (with a minor change or two). Thank you, Jess and Justin, for making it possible for me to access at least a few of the memories, that I thought were forever lost.

 

Two years ago today was the last time I ever got to see my Kenneth's eyes open. After falling out of bed numerous times the night before, he finally slept for a few hours in the morning. I had to get him up for the visit from home hospice, but it was obvious the confusion had completely set in. After the visit, I stepped outside to speak with the home hospice worker. I told him I suspected it wouldn't be long, before Kenneth was gone; and he was honest with me, saying that Kenneth was in bad shape and that he would be surprised if Kenneth made it through another 24 hours.

 

As hard as it was to hear, I have to admit I truly appreciated his honesty, as it helped me to mentally prepare myself for what was to come, at least as much as one can prepare for these kinds of things. That day was my youngest son's 18th birthday, though, and in my heart of hearts, I inwardly prayed that he would at least make it through the day. For several years in a row, my son's birthday celebration had been nonexistent, due to Kenneth being hospitalized for one reason or another. He simply could not die on that day, of all days. He just couldn't.

 

Earlier in the day, while waiting on the home hospice worker to arrive, and during the time he was there, two of Kenneth's sons and his daughter (all in other states and several hours away) called to speak with him one last time. Those were short conversations, because he was so weak and tired and far too confused to carry on a conversation. He kept repeating himself and saying things that made no sense whatsoever. He also spoke with our youngest son, who was the only one still living with us, and wished him a happy birthday.

 

Shortly after the home hospice worker left, my daughter and her fiance arrived from Arizona. My daughter got to speak with him for a few minutes, while he smoked one last cigarette. Then, he hugged her and said he was tired. He said he wanted to take a nap and would talk with her more later. She hugged him, and he said he loved her. As she and I left the room, I called back and said, "Love you, Babe!" Those were the very last words we ever exchanged. He laid down to take a nap, and quietly slipped into a coma some time after that.

 

To this day, I still have that last cigarette that ever touched his lips. I keep it in a plastic baggie, tucked inside his favorite jacket, stored inside a larger plastic bag in the back of the closet. Smoking was so much a part of who he was, and it was the final thing he did before he died. I just could not bring myself to throw that cigarette away, no matter how hard I tried. And so, I keep it. As much as I hated his smoking, that last cigarette is now one of my most prized possessions.

[Mr C]

Such a moving recollection. Thanks for sharing.

((((Hugs))))

[lcoxwell]

I had planned to come here and put into words what I remembered of the day before Kenneth died, two years ago. Quite honestly, I found myself sitting here, looking at a blank screen, but the words just simply would not come. Then, I looked back at the what I wrote a year ago, and I realized why I couldn't find the words. The words I wrote a year ago are the words I truly wanted to share. These are the memories from the day before his death, the ones I shall always carry with me:

 

"I am now down to today and tomorrow, and then I shall stop posting all the "One year ago today..." updates, as I will have passed the one year anniversary.  It is so hard to believe I have made it to this point.  I never could have survived without all of you, at least not survived with any part of my dignity or sanity intact.  With that being said....

 

One year ago today, I had entered what I call, "The Death Watch".  When I woke up that morning and could not get him to open his eyes or respond to my voice, I knew that the time had come.  I called home hospice, and they confirmed that he had slipped into a coma sometime between when he laid down to take a nap the night before and that morning.  They offered to come and take care of him, but I told them I would do it, that I would call, if I needed them.  So many times, he had joked that it was just the two of us, against the world.  It just seemed appropriate that it should just be us, at that time.  I felt like I had taken care of him for so many years up to that point, that I wanted to be the one taking care of him in the end, too.  I can't really explain it, other than to say it felt like something I had to do.

 

A few hours later, his mother, sister, nieces, and nephew arrived to see him, one last time.  I have to be honest, I was horribly resentful at their intrusion.  For years, they hadn't visited him, even when he was in the ICU in the hospital.  They didn't come to the house or invite us over.  They didn't call to check on him.  They gave us no support, whatsoever.  I was angry that they had turned their backs on him, just when he needed his family the most.  I was even angrier that I had called them 5 days before and told them they needed to call him and to visit, because home hospice had been called in and I had been told he would go quickly.  I felt like they should have come sooner, and by waiting, he did not have the chance to see them or know they had visited.

 

I also have to admit being resentful for the intrusion on my time with him.  Instead of spending the last few hours I had with him, I was having to sit in the other room entertaining them and talking to them, when all I wanted to do was sit by his side, to hold his hand, to kiss his cheeks, and to tell him over and over just how much I loved him.  A part of me felt that they shouldn't be there, that it had just been the two of us and our kids for so long, that it should just be the two of us and the kids in the end, as well.  I wanted to lie down on the bed beside him, with my head on his chest, just listening to him breathe, without having to hear their voices in the other room.  As selfish as this may sound, I was happy when they decided to leave, so I could just focus on him.

 

Some time late that evening, after everyone had gone, I had a call from a dear friend across the country.  He had called to check on Kenneth and on me.  During that conversation, I mentioned that I felt like Kenneth was holding on for some reason, like he was waiting on me to give him permission to let go.  I remember just sobbing into the phone and telling my friend that I just couldn't bring myself to say the words, though I knew I needed to.  I knew Kenneth was waiting on me, that he wouldn't leave, until he knew I was ready to let him go.  My friend told me it was alright, if I couldn't say the words yet, and offered prayers for strength.  I am so thankful to my friend for lifting me up in prayer at that moment.

 

Throughout the night, I barely slept, afraid that if I closed my eyes, he might slip away from me, and I wouldn't know it.  I wanted, needed, to be there for his final breath.  To this day, just one day shy of that one year anniversary, I still feel like the only reason he made it through that night, was because I hadn't found the courage to tell him it was okay to die."

[donswife]

I felt your love for Kenneth in every word you wrote

[lcoxwell]

Thank you, everyone, for bearing with me, as I have come here to count down those memories from Kenneth's final week. This was something I did last year, as well, but I was such a mess and so frantic, at the time, that I did not get a chance to truly reflect on all that I was sharing. I guess, with the chaos of the transition from YWBB to the temporary site to here (during this time last year), I truly did not get the chance to process the emotions. I was just so traumatized by everything that was happening, at the time.

 

I cannot tell you how much it has meant, being able to come here and share the memories, once more. This year, I have found a certain sense of healing, that I didn't have before. Without this board, and those of you who have allowed me to share, I would never have been able to to feel this sense of peace that I now have.