Living With Death

We know that mom's time here on earth is coming to a close. She has has cancer for a long time but life has not changed for us until recently. She had frequent doctors appointments but I do too. She would be tired and have pain often but so did I. It has only been in the past month that we have begun to come to terms that she was actually dying. Even then... if we could just get fluids in her.... the right combinations of meds... if we just were more careful about giving lactulose, the medicine that lowers the ammonia levels in her system. We had long "war councils" as a family... planning our next steps.... researching all her different meds to see if her symptoms were caused by side effects of the meds she was on, hoping that changing meds could change the situation. If we just stayed with her around the clock... if we monitored things more carefully...if love could make her well, we would have healed her.

But cancer is a mean ugly beast that destroys everything in its path, including our hearts. Eventually, one miserable day in the hospital after another, we began to realize that the fight had changed. It stopped being about getting her well enough for the next experimental treatment and started being about getting her home and comfortable. We met with the palliative care doctor who confirmed what we had individually come to realize... the medicine wasn't taking her away from us, the cancer is. Her confusion hasn't been caused by meds... exacerbated by them, perhaps... it's because of this evil beast stealing everything from us, even our ability to talk with her. She has moments where we can see glimpses of who she used to be but mainly we just care for the small shell that used to house my amazing mama. Her eyes don't fully open much any more. She's asleep more than she's awake. She stumbles the few feet from the couch where she is more comfortable than the hospital bed... to the bedside commode sitting in our living room.

Friends, family, nurses, helpers... come and go. We leave periodically to run errands and clear our heads but we can't ever escape the fact that we are living with death. We casually discuss funeral arrangements as if we were planning an upcoming vacation. This is our life, our immediate future. I sometimes am so absorbed in this dark cloud that it surprises me to see people who are joyful or just going on with life as normal. Then I remember that this experience is unique to our village. Just beyond our life is life, unencumbered by the weight we carry. Every plan we make comes with a disclaimer... if nothing changes.

Certainly change will come... and has already come. Mom doesn't come downstairs to clean the litter box or collect my dirty laundry. I don't hear her running the vacuum or weed eater. We don't chat about what we saw on Facebook or share bits of family gossip. I can't tell her how much pain I'm in or worry over my kids with her. That part of out relationship has ended. Now I hold her drink to her lips and make sure she takes a few sips. I spoon feed her like she spoon fed me all those years ago. I sit and watch her sleep, grateful that she is escaping the pain for a few moments. I make sure she is comfortable and try to interpret her murmurs to be able to get exactly what she wants.

I remind pop to take his meds. I listen for frustration in his voice to step in when he needs a break. He is sleeping now, trying to catch up on the lost hours from last night... the cumulative loss of sleep over the past month or so when mom has needed constant close supervision. I try to line up help to do the things I can't do and feel like I can never do enough. I visit with people who come by so pop doesn't have the entire burden of entertaining on him. I run errands. I pick up things for dinner that no one has to cook or clean up. I take phone calls and message friends and family so pop doesn't have to.

There is a thick notebook that hospice brought us full of helpful information. In the chapter on "the dying process" I search through to see where she fits... some things are in the 1-3 months left section. Some things are in the days and hours section. Most things, I think, are in the 1-2 weeks left section. Bryan and Helen are coming with Finn in one week. I want her to have that one last visit with Finn. Even if he is too young to remember and she is no longer aware of who is with her... the goal of youngest family member being with oldest family member is an important event that we want to happen before she leaves us.

When she was diagnosed with the cancer in her pancreas in late 2015 I was mad. I felt abandoned. How could she leave me when I need her so much? Irrationally I felt like it was unfair that she would find relief from pain before me, that I would still have to suffer. Many times along the way I have been frustrated by the additional responsibilities I had to take on because she was no longer able. Her being sick didn't fix my back. I'm in just as much pain as before... more pain, actually. But now... as I watch her struggle I know that she has earned the escape of death. Her suffering is too great. Her quality of life has been completely taken from her. It will be a relief to know she is no longer suffering. She would be mortified by the indignities she's suffering now, the loss of modesty and privacy. She would hate to know how tired we all are. She had a brief time of awareness on Sunday and she thanked me for doing all the things I'm doing. How could I not? How could I do any less?

Thank you for your kind words and encouragement and prayer. I'll keep you posted.

Update on My Mom - What's Going ON?

I'm dusting off the old blog for the first time in nearly four months because I have a lot to say that I finally am at liberty to say and this is the easiest format for this large amount of information.

You may have seen me post here and there about my mom being in the hospital. I have been sort of the family public relations person and have had to disseminate so much information in so many different directions in addition to taking in tons of information related to her care. I quite honestly don't know what I've said to whom so I'm going to just put the whole story here so that I can refer folks to this post to fill in the blanks as needed.

My mom was diagnosed with a carcinoid tumor in her intestines back in 2010. If you've been around for a long time you may remember this episode. She had what they thought was diverticulitis and she was doing really poorly and in an awful lot of pain and spent several weeks in the hospital. I would link you to that post/those posts but if I start trying to link to all of this stuff it will take me forever to do this post. The gist of it was that she had a lot of stomach pain, they thought it was a blockage or diverticulitis and they did surgery and found this particular tumor. Carcinoid tumors are neuroendocrine tumors. My google medical degree limits my ability to explain this type of cancer but the main thing to know is that it's a hormone based cancer. They removed it and she began follow ups with an oncologist that have continued through now.

In late 2015 she began having a lot LOT of pain in her gut which turned out to be pancreatic cancer. One thing most people immediately know about pancreatic cancer is that it's usually not survivable... something like only 1% of people survive for a year or two years. Mom's pancreatic cancer, however, was a metastisis of the original carcinoid cancer from 2010. This was, they told us, as pancreatic cancer goes, the best kind to have. In early 2016 she had surgery to remove most of her pancreas and she recovered quickly and returned, for the most part, to her usual self... fishing, gardening, loving on grandbabies and great-grandbabies, spoiling that little dog and taking care of me because... you know, my crappy back. Losing most of her pancreas did cause diabetes and she had to be careful with her blood sugar but for the most part, she was ok.

Last August... around the time that we were getting through the worst of the drama with Cosy... mom started having pain again. She went back to the oncologist and unfortunately found that the pancreatic cancer had returned in the remaining portion of her pancreas with some additional areas of cancer. The oncologist began treatment that involved a verrrrrrry expensive injection once a month to slow the spread of the cancer. From August through maybe... March or April of this year... she did ok. I won't say that she was running marathons or anything but she was able to function for the most part. This spring she began to have more and more pain. Her pain meds were increased and increased again.

Around the end of May... beginning of June... I had a weekend where I was really sick with a stomach bug... upset stomach, feeling really icky... Cosy and Tasha had the same thing so when mom started getting sick to her stomach and feeling poorly, we first thought that it was related to the sickness we had all had but mom didn't get well. She developed increasing pain. Doctors were consulted and the ultimate diagnosis was kidney stones which were treated with a stent to help them pass. Most of you have at least known someone who has had kidney stones. Not pleasant for a healthy person, really debilitating for someone who is already sick.

The problem was... at the time of the placement of the kidney stent, mom all of a sudden turned very yellow. Oompa Loompa yellow/orange. Alarming yellow. Mom was still feeling really poorly and we had not quite understood at this point that she was no longer able to manage her own care as far as making doctors appointments and following up on things. About a week went by with us waiting for some kind of follow up to happen before I blew up at the urologist over the phone for not doing anything about what was clearly... to my Google trained eye... the result of toxins somehow related to the insertion of the stent for kidney stones. It wasn't kidney related. She had jaundice, obviously related to some sort of liver dysfunction. Well, obvious to medical personnel not from the Google School of Medicine.

At this point mom asked me to be her medical advocate. Not because Pop isn't capable or willing... but because I'm really good at being the bad cop... stomping my feet and making demands and making sure everyone stays on task. I'm bossy. I prefer to introvert so if I have to make a phone call to make someone else do their job, I'm really annoyed which means I'm going to do my darnedest to make sure I don't have to make another call. Also, as a chronic pain patient, I understand what it's like to suffer and know how important it is for someone to speak up for you and say, "THIS IS NOT OK!"

I'm going to end up messing up some of the details and timeline here because I can only explain the month of July as a complete blur. I'll do my best. On Wednesday the 28th of June mom went into the hospital for pain and illness related to the jaundice. It had been determined that there was a tumor blocking the biliary duct... bile couldn't drain, thus the Oompa Loompa Syndrome. (which really makes you wonder what kind of health care old Wonka was providing his workers... but I digress). On June the 29th mom had surgery to place a stent in her liver to allow the bile duct to drain, in hopes of allieviating the jaundice and discomfort in her liver. She was released from the hospital the next day, June 30th and honestly, has never been well since.

Pop has cared for Mom around the clock since all of this began. He has had to help her with the most basic of tasks, kept her blood sugars in check, administered medications (and tracked dosages with an elaborate spread sheet). On Sunday the 2nd of July, mom asked him to get me. I went upstairs and she said, "I need to go to the hospital." I called the surgeon who had inserted the biliary stent and explained the symptoms mom was experiencing. They said to bring her to the hospital... by ambulance... so we did. I rode in the ambulance, Pop followed behind in the car. In the ER they told us that she had a urinary tract infection and her ammonia level was really high. They admitted her.

The next day, Monday, July 3rd, mom was feeling better. She was able to sit up. She was chatty. She actually looked the best she had looked in a few weeks. Pop went home that night and when he came back on the morning of July 4th she was completely changed. She didn't know who he was. Well, she knew he was her husband but she thought he was Evil Knievel. She was hallucinating. She was completely confused. She was, what we might call here in the south, a hot mess. We were told that she had a rough night and so the night nurse gave her ativan - an anxiety drug. This particular drug, like many we've found over the years, has the opposite effect on mom. They followed that with ambien. It wound her up even more. All of this was to keep her calm and still ... because she could injure herself, maybe? Or maybe because it was a holiday and perhaps they were short staffed? We can't ever really know. I can only say that although we have had some good days with her since then she has never really returned to who she was before that night. We found out last Friday that it might not have been those meds that started shutting things down. We just don't know. At that point we determined not to leave mom in the hospital without a family member or friend with her... to have someone stay with her around the clock so that we can closely monitor what she is given and why.

The confusion got some better on Wednesday (the 5th) and the next day. The hospital doctor thought that perhaps if they could release her to home she would do better... familiar environment, that sort of thing. She came home still confused and still weak but no longer yellow... at least that had improved. Also during this time there was some concern about the effect of pain meds and some of the types of pain meds and dosages were changed. I don't want to go into too much detail about that sort of thing for safety reasons but I'll summarize it by saying we tried to increase her cognition by lowering her medication levels. It was also becoming clear to us that her liver was not going to be able to process some of the medicine they were giving her.

Over the next two days, (the 7th and 8th) mom became more and more confused, increasingly lethargic, unwilling to eat and drink, etc. Pop focused on carefully giving her the medicines they had sent us home with us although, unfortunately, we had conflicting and confusing information on medicines and their purpose. For instance, we had one particular medicine that was a laxative... but she was on several other laxatives and it wasn't apparent to us why she needed this extra one that she HATED. We later found out that this particular medicine was to help clear the toxins from her system and to prevent the build up of ammonia in her system, which was part of the reason - at least it was thought this was a reason - for the confusion. Home Health came out on the 8th  to do an initial assessment to begin seeing mom every couple of days in hopes of keeping her out of the hospital.

On the 9th mom had really been too confused and lethargic to eat or drink much. My middle brother, Michael, and his son were visiting from Chattanooga. It started to look like we needed to get mom back to the hospital but honestly, we were so very tired. I couldn't even imagine taking her back to the hospital. She had just left two days before. I called my older brother Jim to come over and help us assess the situation as a family. We all worked together to help mom get a little fluid in her and get settled in for the night and made the decision together that we would wait until morning to decide whether or not to go back to the hospital. The next morning, unfortunately, things had declined even more and once again I made the call to 911 to arrange transport to the hospital.

We live in a county without a hospital. There is a small hospital in the neighboring county where Cosette was born but the preferred hospital - and the hospital where mom's doctors practice - is in Gainesville, about a 45 minute drive away. This becomes a factor when you are spending long hours at the hospital because when you drag yourself across the hot, steamy parking lot at dark-thirty and walk the half a mile (exaggeration but it is a long walk) to the last handicapped parking place in the entire lot, you still have that 45 minute drive ahead of you. It's the trade off for better care... but also why we could not transport her when she was confused. You can't drive that far with a passenger who is that unwell.

The hospital visit of July 9th through the 14th was more of the same, to an increased degree. My brother came down from New York and stayed with us spending days with mom and nights here at the house. We held several family meetings to discuss mom's care and quite frankly, Pop's care because there is no way he could continue to provide care for mom around the clock, even with my help. Understand, also, that my ability to help is limited by my own health problems. My back, for one thing, has been a huge hindrance but the week of the ninth I battled a migraine headache for three days that really took me out of the game. We were so blessed to have the help of my aunt and uncle overnight and also the help of two ladies from the church who stayed with mom for us. Times like this give you an opportunity to realize how much good there is in the world and I am eternally grateful for the acts of kindness that continue to support us - sustain us, really.

On the 14th again, mom was released home. Still having lots of confusion, still requiring lots of care. She was released on a Friday and Home Health was supposed to come see her on Monday. We can't take her to a doctors appointment because she is not well enough for the trip in the heat or to sit in a car... or in a waiting room... so these home health visits were our only way to know that mom is doing as well as she can at the moment. Well... Monday came and we didn't hear from Home Health. I called and they said they didn't have orders to restart her visits. Long story short, someone had misplaced the paperwork. They confirmed to the hospital that they had the paperwork on Friday but by Monday morning it was nowhere to be seen. I was assured that someone would be out on Tuesday. Tuesday came and there was no phone call to let us know someone was coming... I called back to home health and ... oops... they were sorry... they didn't get they paperwork until late Monday so they couldn't get her on the calendar for Tuesday. I kindly but firmly reminded them that they had the paperwork on Friday and that it was their error that required new paperwork to be sent. They knew early Monday that she would need to be seen and I was not willing for mom to wait an additional day for this to happen. I got an extensive and sincere apology - which was fine - but I told them I didn't need an apology, I needed a nurse. Eventually one was located and she came to evaluate mom.

The problem with Home Health for us is that they really only assess vitals which we can do ourselves. We needed someone with decision making ability who could change medications, provide real guidance and explain to us what was happening. So despite the nurse visit on Tuesday afternoon... mom's condition, especially her cognitive condition, continued to decline. She was mentally unable to focus or understand what was going on. She went through a period of acting drunk - trust me, the woman has never had a drink and she was definitely not obtaining alcohol on her own. It was cute for a minute but then really tiring to provide constant supervision. By last Thursday (the 20th) she had cognitively declined to the point of being catatonic. Was it the liver issue? Was it related to a medication? Were we giving her too much of one thing and not enough of another? Had the cancer spread to her brain? There was no way to know so once again we were directed to bring her to the hospital by ambulance.

This hospital visit was like the previous ones... adjusting medications... giving her fluids... etc. except this time they brought in the Palliative Care Doctor to meet with us. This man will always be my hero because finally someone explained to us what was happening with mom cognitively. This cancer that started in 2010 with the neuroendocrine related carcinoid tumor, which spread to her pancreas and now liver, puts off hormones that affect the seratonin levels in the brain. Mom's confusion was not caused by something she was taking (although some of the medications she was given DO cause hallucinations, etc) it is caused by the drastic rise and fall of seratonin in her brain. Without relaying the entire meeting - 45 minutes plus with my older brother and sister-in-law, my dad, me and my brother in New York FaceTimed in - the ultimate decision was to no longer provide artificial fluids for mom. When she is unable to eat and drink it's because the cancer is making her too sick to handle it. Continuing to fill her with fluids only feeds the cancer, not her. Her body can't process them any longer. Withholding pain medicine to attempt to make her more lucid only increases her suffering. We want her final days with us to be more about quality than quantity. We can test her blood sugar and give the meds for that if she wants it... but we don't have to. We don't have to force her to take the awful meds for clearing the toxins out of her system because they really don't clear her enough for it to matter. We did tweak some medications that weren't working as well as others and she had a couple of days of clarity. The pain meds were adjusted to where she is more comfortable.

Mom was released from the hospital on Sunday (the 23rd) to hospice care at home. The hospice program is WONDERFUL and everything we needed but weren't able to get from home health. We have everything we need on hand to make mom's last days comfortable and peaceful, right here where she wants to be. It will be hard. I'm not under any delusions. Because as a family we have accepted the doctor's advice that providing IV fluids when she becomes dehydrated is just prolonging things and not helping her, I know there will come a time when we know that she is not taking in enough nutrition to sustain life. We have a nursing tech coming three times a week to keep mom and her environment clean (although Pop is pretty good at helping her shower so far). We have a nurse assigned to mom who is a member of our church and a dear, sweet lady. We have a social worker involved in helping us to process things. We have a sitter who stays with mom two days a week for Pop to get out of the house and we can increase that if needed. I stay with mom on Sunday and Monday for Pop to go to church and for him to go preach at the local nursing homes. We have our usual housekeeper coming to vacuum and do the heavy cleaning that I can't do. It really is a community effort. I've received wonderful, loving, supportive messages from dozens of cousins, facebook friends, blog readers, people I've known in my real life... and although I get a bit mushy, I'm so grateful to not be facing this alone. If you've messaged me and not gotten a response, know that I've read your message. For an introvert I'm having to do a lot of communicating and there are times that it's overwhelming... but your kindness is appreciated.

We don't know if she has days or weeks. It could be months but probably not. Our family primary care doctor always says to me, "your mama is one tough woman" and she is... but this has been a long fight and she is tired. I had held off on putting all of this information out there until we had explained the situation to close family members... so as it not to be something they discovered on the internet... but the internet is MY home and you are MY people and I wanted you to know what has been going on. And unfortunately, we are not insulated from other outside issues... cars break down and require repair... Austin's been through a bit of a rough patch (not related to Cosy, she and her mama are great... Cosy's other family has been very supportive) and there are things I have to deal with - with and for him - that I'd rather not do ever, especially now but life does go on and we must live it. We will live it. I'll keep you updated... thanks again for all your love and support! *hugs*