I love reading birth stories. I can fall down a rabbit hole of birth stories and get lost for hours. In the past few weeks I have found myself more focused on death than life and have been really curious about those final days and hours. Honestly, if law enforcement got hold of my laptop they might start looking for a body... with Google searches like, "signs that death is near"... I haven't Googled "death stories" but I'm wondering if there's the same type of rabbit hole for death stories. I'm not going to look but if there is, I'll add one to it.
These past few weeks have been filled with so much emotion; raw, personal, really deeply introspective stuff. I would never want to relive this time of my life but I do feel to some degree that it's appropriate to share in this format. I hope you won't find it disrespectful but will get a glimpse of the wonder and magnitude of it all. I hope that those who loved my mom and were touched by her time on this planet will understand what an honor it was for me to be with her in her last days. Or maybe, you've googled, "signs that death is near" and maybe this death story will be helpful to you as you travel this road with someone you love.
I last left this story about three weeks ago. I've posted some stuff on social media since then but time has been limited and I've lived in a constant state of pain and fatigue in that time. Yes, Austin found a job... it's at a 140 year old General Store in our area, working in the deli. It's everything that his last job wasn't and nothing that it was. He's doing ok and I'm grateful.
My mom passed away on August 18, 2017 after a seven year battle with carcinoid syndrome that began with a neuroendocrine tumor in her intestines that metastasized to her pancreas in November 2015, and then last August it was found to be in her blood stream. I won't go into a lot of details on this type of cancer because I want to be specific about our journey not about the medical stuff. The important things to know are that it was the best type of pancreatic cancer to have which meant she survived longer than many people do with pancreatic cancer (although it was not even two years) and that this neuroendocrine type of cancer affects your serotonin levels in your blood which is why we lost mom COGNITIVELY about a month an a half before her actual death. For all intents and purposes we began to grieve the loss of relationship with her on July 4th of this year. We had glimpses of who she was after that but by and large she was... out of it... to put it plainly... from that point on. In many ways I feel like we are already a month and a half into the grieving process, honestly.
Because of her cognitive decline, the task of caring for her was, in many ways harder in her final weeks... but she was less aware of her situation which I hope made it easier for her. She lost her vision at some point in the last week or so. My dad became aware of it sooner than I did (and didn't mention it to me until I mentioned it to him which will tell you a little bit about how we processed things in those last weeks!). She developed a horrific patch of dead tissue on her tailbone which was probably the hardest thing for me to deal with in that I knew that every time we touched her (moved her, cleaned her...) it had to cause her terrible agony. Her skin around that dead tissue was literally like tissue paper and would just pull open with the slightest movement. Once that happened we no longer attempted to help her get up and down to the bedside potty. This was easier for us in some ways because by the last week she was unable to support any of her own body weight so that even though she had lost a good deal of weight... she was still very heavy to move, especially with my back problems. This was harder in that we had to change her which was really, really humbling. If you think it's hard to change a squirmy baby, it's a thousand times harder to change an adult who has no understanding of what you're doing.
In the last week or so of her life, the last six years or so of my life began to make more sense. If I had never had the back problems that disabled me, I would have been working, probably full time, and would not have been able to assist my dad in caring for her. I might have been in a relationship that would have been compromised - at least challenged - by the time I spent caring for mom. I would most likely have not been living in the same house and therefore around to lend a hand whenever Pop needed.
As the only girl in the family there were things that I chose to do so as to spare my brothers... but more importantly to preserve my mom's dignity to the extent that I could. This is true for the last month and a half of her life but much more so in the final week. There were also certain medications that my dad was less comfortable giving her that because of my own battles with pain, I had less reservations about. If this life... this life with chronic pain and the disabilities that has brought me... brings about no other good than what this Summer has taught me, then I'll still gladly bear that cross. All things DO work together for good for those that love the Lord and are called according to His purpose (Romans 8:28). Sometimes we never know what that good is. I will always believe that it was for this very season of life that we just passed through. As it says in the book of Esther, "for such a time as this".
We knew, once mom had developed the patch of dead tissue, that time was growing very short. Our hospice nurse (best hospice nurse that we could ever have hoped for!) had been working with us to interpret symptoms and signs as mom got closer to death. We could see her obvious physical decline. Her blood pressure was lower. Her feet were swelling and began to be discolored as her heart wasn't pumping hard enough to circulate her blood. She was communicating less and when she did try to talk it was very hard to understand her. Her food and water input was almost down to nothing, although we certainly gave it our best effort, even dropping syringes of water into her mouth. Last Wednesday, the nurse had said we probably were in the last 48 hours. While I was not anxious to lose my mom, I would never have wanted her to continue with the quality of life she had in the last month of her life. I believe in Heaven, I believed she was bound for Heaven and therefore I had hope that while we would miss her for the rest of our natural lives we would be reunited with her someday.
Many of you know that there is a sibling in our family that has been estranged from the family for the past several years. Many people have asked if we reached out to him in these last few weeks and the answer is, yes, we did. He has known about the cancer for the past two years and had chosen not to attempt to contact mom (or any of us, to my knowledge). I didn't really have contact information for him (they even moved without giving us a forwarding address) but he and his wife own a dance studio that has a website so I used the "contact us" option on the website to let him know that there was not much time left if he wanted to see mom. He chose not to. We notified him of her death and he said he was praying for us but he did not attend the funeral. We all have to live with the choices we make in life. Mom asked me at one point in those last weeks to "forgive _____". There's nothing to forgive. I harbor no bitterness toward him, only sadness for what he has missed out on and what his children have missed. Nobody ever loved a grandchild more than my mama... and I say that as a very involved, obsessed Nana... but I'll always be sorry that those nieces and nephews didn't get to know her as my children and the other grandchildren have.
Last Thursday, knowing that mom was probably in the last days of her life... but understanding that it has been a marathon, not a sprint, we went ahead with the plans for the day. Pop played golf... I spent time with Cosette while the sitter (who was also amazing) was with mom. This has been such an emotionally intense time. Two luxuries I always allowed myself were sleep, every night for at least four-six hours (which is not enough for a chronic pain patient, trust me) and the opportunity to get out of the house when it was practical. Bette cared for mom two to three days a week. She helped out with the laundry and basically offered to do anything and everything we needed her to do. She was great emotional support and just honestly gave great hugs. I tried to stay accessible while she was with mom, especially if Pop was playing golf and needed to completely disconnect, but I had no reservations about leaving mom completely in her care. That's what I did that day and in retrospect, I think those were the right choices for us. The following days were emotionally brutal and I'm glad we had time to catch our breath before then.
Friday morning I took Austin to work and went to the bank to deposit a check for Pop. I got to the bank five minutes before they opened and there was a line of people outside. I just thought... no way can I deal with waiting patiently in line... and I went home without going into the bank. When I came in the house, the nurse tech who gave mom her bath three times a week was with mom and let me know that mom had been struggling. She was panting hard, like she had been running and could not catch her breath.
From that point on I stayed with mom except to go to the kitchen to draw more medications into the syringes that we used to put medicine in her mouth (as she could no longer swallow pills). The nurse (whose name, ironically, was Heather) was in touch with the hospice doctor who kept advising additional medications to try to ease mom's breathing. Nothing helped. At some point Heather told me that anyone who needed to say goodbye needed to come. I sent texts to all the family members but we were all ready for her passing. My oldest brother came to the house and he, Pop, Heather and myself just stayed with mom, trying to calm her and reassure her. This lasted for almost two hours. Two hours of that really hard struggle to catch a breath. She fought every second of the way. Pop sat beside mom on a stool we had by her hospital bed until around 10:57. Mom took a deep breath and then stopped breathing. I turned to Heather and said, "Is that it?" and then mom again started panting hard again. Pop stepped aside and I took his place beside her. I held her face in my hands like you would a small child, trying to get her to focus and calm her breathing. I just began to tell her things like, "it's ok to go. your work here is done. you can rest now." A single tear rolled down her cheek and she took her last breath at approximately 10:59. I overheard Heather say, "she's gone" and then all the emotion in me just tumbled out. My sister-in-law Angie had come into the room JUST THEN and put her arms around me. I didn't realize until last night that she had not been in the room earlier... which is crazy because I knew at 10:57am who was there and I knew Angie wasn't there yet. Angie didn't know when she came in that it had literally just happened as she stepped in the room.
Anyways. The hospice nurse arrived and the nurse tech left. Things were happening. I sent texts out to the family. My brother in New York had wanted to be notified in person so the plan was to let his wife know so that she could go to his office and let him know. Austin wanted to know in person so I had to wait until the end of his work day. Angie went to her daughters' schools to tell them in person. I called my son in South Carolina and told him. We tried to keep it off social media until we had notified every family member (which didn't exactly happen but fortunately, Austin was in a place where the internet reception is poor). It was a flurry of activity but not really rushed, if that makes sense. We had sort of rehearsed and discussed this process over the past month or so and knew what needed to be done, in the same way you make sure you know the best routes to the hospital when planning for a birth. At some point I needed to introvert so I went downstairs and stayed downstairs until the men from the funeral home arrived to take mom away. Pop handed me the dog and shut my door but... I just needed to have the closure of seeing her leaving the house so I left the dog and went around the outside of the house to the upstairs and went in the house. Pop cautioned me, "I don't think you want to go in there"... because by this time about an hour and a half had passed... but I did, just briefly. Once the undertakers left, I went to see Cosy. I just needed to touch life. I played with Cosy for a few minutes and then came back home to wait for Austin to call to let me know he was off work. It was another THREE HOURS before he got off work. At some point I sent him a text and asked how much longer he was going to be and he says he knew then that she must have died.
And that was it. I'll write another post about the things that have happened in the days since she died. There is a whole lot of emotion involved and I think I've learned a few things that might be helpful to others. Thanks again for all your love and support during this time. I feel like I've just been wrapped in a warm hug constantly (in a good way) and I appreciate that more than I have words to say. Love and hugs, as usual!
Thursday, August 24, 2017
I love reading birth stories. I can fall down a rabbit hole of birth stories and get lost for hours. In the past few weeks I have found myself more focused on death than life and have been really curious about those final days and hours. Honestly, if law enforcement got hold of my laptop they might start looking for a body... with Google searches like, "signs that death is near"... I haven't Googled "death stories" but I'm wondering if there's the same type of rabbit hole for death stories. I'm not going to look but if there is, I'll add one to it.
Posted by Heather at 7:16 PM
Wednesday, August 2, 2017
I wanted to write another post to get you all up to date but I'm so tired that it's hard to write intelligent words in sentence and paragraph form. My thoughts are more like... bed alarm... food... sleep...
Mom is not strong enough to stand up without help. We have a wheel chair for her and a bedside commode that reduce the distance she ever has to walk. However, she also is mostly out of it so she will stand up for random, unknown reasons and try to get wherever she thinks she needs to go whether or not we're there to help. After a fall the other night, hospice provided us with a bed alarm, I refer to it as the "tattle tale". It's helpful in that it will allow us to sleep nearby or go in another room and know if she's trying to get up. The downside is that the bed alarm goes off all the time because she's trying to get up.
Our wonderful hospice nurse explained it as "terminal agitation". People who are in pain, nearing the end of their life will get random bursts of adrenaline that allows them to be much stronger than their physical condition should allow. Trust me, I am probably double my mom's weight at this point and if she's determined to get up, I cannot keep her from getting up. Last night it was because she was on a bus that was on fire. I am not sure when the bus caught on fire because when Angie was sitting with her earlier yesterday, it was just a plain old bus, not a burning bus. In my sleep deprived, pain addled brain I kept turning the burning bus into a burning bush and trying to make some biblical connection. It wasn't a bush though, it was a bus.
This is all sweet/sad/exhausting at the same time. We're so grateful for these last glimpses of her imagination and creativity and personality. We're grateful for every tiresome, exhausting minute. My dad has the worst of it because he is with her the most. I try to be there to help as much as I can but the harsh reality is that my back didn't miraculously become healed because my mom got sick. I've supported her tiny body far more times in the past week or so than my fragile spine can handle. I'm in a world of pain... there are times when I just literally canNOT function any longer.
There are also times that it becomes mentally draining. She gets stuck in a loop where she will repeat the same thing over and over and over again. We try to reassure her... like this evening when she was SURE that Pop was giving her the wrong thing to drink. No matter how many times we assured her that all that was in her cup was water, she kept telling us it was the wrong drink. The other day she stood facing the bedside commode for ten minutes answering the imaginary phone and trying to get me to come to the phone. I kept telling her I had it that she could go sit down. Eventually I think she just gets worn out.
She does sleep. Lots, thank Heaven. She's on a pretty stiff cocktail of medications that make her lethargic. As much as we enjoy these last glimpses of her personality, we also enjoy the quiet moments where we're not having to convince her to sit back down every thirty seconds.
We've had a lot of visitors, both friends and family and medical personnel. There's a knock at the door many, many times a day setting Oscar the dachshund off in his deafening barking alarm. We're grateful for the love she has been shown and the wonderful medical care she's receiving. We're also quite grateful for the many, many amazing meals that have been brought for us by the ladies from the church. We are eatin' good lately. Pop and I will have to go on a crash diet once this is all over. Honestly, I may just hibernate like a bear for six months or so, live off the fat of the land for a bit. It seems like every food delivery comes with batch of brownies. I've sampled so many different variations of brownies, each better than the last... that I could write a brownie cookbook. (not complaining, keep them coming!) It has helped so much to not have to think about what we're eating for dinner... or lunch... or breakfast.
As an introvert the constant parade of folks does wear on me. I'd never turn away a single one because it would be selfish to not allow people to pay their respects to her for both her sake and theirs. I do occasionally disappear to my space to recharge my batteries a little bit. People who come here are sad for her and for us. It's an obviously difficult time and her appearance has changed as she has lost so much weight. I recognize the shock in peoples' eyes. I'm sad for them, I grieve with each and every one even if I can't allow myself the luxury of tears right now. There is too much to be done. Crying triggers migraines for me. I have to pace myself. There will be a lot of time for tears soon enough.
Pop and Bubba (does that sound redneck enough?) went down to the funeral home the other day to make her final arrangements. She will have a viewing and then a funeral service and then be cremated. The only thing we weren't sure about was whether to purchase a plot for the inurnment (putting the cremated remains in the ground) or if we would keep/scatter her ashes. I'm on Team Scatter. I don't see a point of a fixed spot in some sad cemetery. We are her living legacy and we will all continue to go out into the world honoring her far more than a piece of ground with some plastic flowers. I'm also not a fan of the whole viewing process. I can't stand when people say, "doesn't she look natural?" Nope. Not at all. She looks dead. I don't want to see her dead but I'm sure I will have to as I'm sure I'll be here when she goes. My favorite funeral flowers ever were in the shape of a phone with the words, "Jesus called and Mawmaw answered". Too morbid?
So I guess that's about it. My brother from New York will be here this weekend with his wife and baby. We're giving Oliver a small birthday party here on Saturday. There will be a bunch of us here and we have to eat and the babies always made mama so happy. She always worked in the nursery at church and ran an in home daycare. Then in her empty nest days she volunteered at the hospital with newborns. Having a party in the midst of all this may seem weird to some but it makes sense for us.
The days tick by and we just keep doing what needs to be done. We will do what needs to be done until it doesn't need to be done any more. Austin's still looking for a job. He's been helpful and it's been a relief not to have to take him to work and pick him up every day. I think that twice a day commute would have done me in. God's timing is perfect. He spent today getting my back porch cleaned up so Finn (my nephew) could play out there without hazards that Cosy is used to ignoring... but Finn may not be. We also set up a section of my living room as a play room and got the toys organized. It's my little happy spot for when the house feels too dark and sad.
Time for me to catch some sleep so I can sit with mom in the early morning while pop does his devotional. I'll try to keep y'all up to date. Thanks for your kind words and prayers and love. I feel each and every one of you holding me up, holding me together. Love and hugs back to you!
Posted by Heather at 7:38 PM
Friday, July 28, 2017
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.
Posted by Heather at 7:28 AM
Tuesday, July 25, 2017
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*
Posted by Heather at 3:19 PM
Thursday, April 6, 2017
Almost three months. Longest blog silence for me ever. I told myself that when I could blog without crying, I would blog again. It's still not happening. I can explain but I'm not sure I want to. I don't want to hurt anyone else. I don't want to throw a pity party. But unless I share what is keeping me from sharing, I don't know how I'll ever get back to blogging.
My aunt died last fall. The aunt who was most like me.... three sons, not as "tidy" as the other sisters... creative, always going from one project to another. I am more like her than my mom or any of my aunts. She was my mom's youngest sister, the youngest of seven children. She had several complicated health issues but the truth is... she died because she no longer had the will to live. Once her husband passed away in 2013 she felt - what I feel every day of my life - that when you don't have a "significant other" you are no longer significant to anyone. I've hesitated to say that because there are people who made a valiant effort on her behalf in the end. Her daughter-in-law quit her job to faithfully attend to her. Her son... her sister... in the end she was surrounded by people who loved her but in the end... it was the end.
I was just sort of stinging from her loss when Christmas rolled around. I worked hard at Christmas to make sure everyone got something special, personal, thoughtful... I did a great deal of my parents' shopping as mom was just not feeling well and dad was, as he always is, busy. I'm not a material girl. I shop bargains. I love Goodwill. I'm not into labels or anything. But I spent a lot of effort trying to make everyone else feel special and once all the gifts were opened... I didn't feel special at all. I felt, once again, insignificant. I spent a healthy sum on each of my kids and grandkids and I got ... from all of them in total... one gift. One small gift from one of my sons and that was it. My sister-in-law did get me a little extra something special because, as she said, I "do so much for people". And I do. I appreciated her noticing, she is one to always encourage me but she's a very busy lady and our paths don't cross often enough. So it wasn't ALL bad....but even now, three months later, I can't shake that feeling of being insignificant. When they say it's the thought that counts, that's so very true. And I just didn't feel that anyone put much thought into Christmas for me. Again. I say this not to make anyone feel bad or ... whatever... people had stuff going on in their lives. They were all busy. Or broke. Or... whatever they were. But the result was unavoidable. I sat in a room full of family watching people open lovely gifts specially chosen for them and I was so happy for them because I love them. But I felt very small and unimportant. There's no worse feeling in the world than being alone in a crowd.
It became sort of a tangent realization of what my life is and who I am to the world around me... insignificant. It's weird... because my whole life revolves around taking Austin to work and picking him up... getting Cosy on the days we have custody and also on the days when Tasha needs a break... dogsitting Oscar the dachshund when my mom is at the doctors or in the hospital. I've been trying for a year to string together a few days to go spend time with Oliver because there is so much that I have to do. I managed to squeeze out three days this week but then my pain levels became too high for me to drive that far alone. The weather has been awful and nothing affects arthritis more than changing weather. I found out yesterday that I can't get the prescriptions I need to be able to function until halfway through the visit because they're schedule... whatever. So I would be a hundred miles from home potentially withdrawing from three meds on top of the normal unpredictability of my pain which has been bad lately.
Migraines have become a huge problem for me. I've had them forever but they're more frequent and more severe. There are a lot of times that I have to be the one to pick Austin up from work so I have to wait to take meds to alleviate the migraine until after I pick him up. I've begged him and begged him to start driving but he isn't ready yet. I didn't drive until I was 28. I get it. Sometimes I'm not sure he really understands the toll it takes on me. But I know he appreciates me. And I appreciate how close we are, that he and I are a team, that I can talk to him about things I can't talk to anyone else about and vice versa. One night I picked him up when I was having such a severe migraine that I was crying hysterically. Usually I don't let anyone know I'm crying because I don't want them to worry... or think I'm having some kind of breakdown or whatever. Sometimes it just hurts so much. I've got a procedure scheduled in two weeks that is supposed to help... some medicine they put up into your sinus cavity with a catheter. I'm afraid I'll chicken out before then.
So all of those things that I just mentioned... they've been keeping me from blogging. From feeling like I have anything significant to say... from feeling like anyone really cares what I have to say... from feeling like I can't share my heart without hurting the heart of someone else that I love. There's all that and there's Trump. For an introvert like me who avoids conflict and controversy at all cost, it just reached a point where I fell like I was drowning in the hate... hate from others toward "people like me" who didn't elect Hillary... snide comments about Trump voters from every angle... and again, people I love who would be really hurt by my own comments or justification for the outcome of the election. There's so much bitterness still on both sides and I just don't have the emotional energy to wade into those waters. I don't watch the news any more. I can't.
What I didn't want to do is get on a soap box about all these things and use my blog as a weapon to strike out against the things that have hurt me. It's impossible to explain and not complain. I didn't want to be accusatory. I didn't want to leave on bad terms when this blog has been the only consistent thing in my life in the past twelve years. Being able to come here and open my heart has saved my sanity for so many years. It just lost it's joy for me. I have written dozens of blog posts in the past three months and deleted them without posting. Nobody wants to attend a pity party. Honestly. I don't. I would have clicked out of this blog two paragraphs in so if you're still reading, thank you.
Now... the good things you should know... I'm getting out more, doing more things, enjoying my grandchildren so much! I wish I could have more time with Oliver but I'm grateful that I get to see him at least once a month. They're both talking a lot and every time they say, "Nana" my heart just melts! My nieces are taller... more beautiful than ever... successful... just amazing creatures. I can't believe how incredible they are! My mom is doing well. She's still doing my laundry (LOL) and she has a lot of good days. She has a lot of pain too but ... she's hanging in there. One of my nephews who was a bit... let's just say, "distant" has become closer and I'm so grateful to build a relationship with him. Cosette's birthday is this month and I'm planning a "Tea for Two" tea party theme. We've had fun buying hats and accessories for our guests to use. When I Facetime with Oliver he always wants me to wear a hat and I go through them while he decides which one he wants me to wear. Austin is loving his new job and is training to be a shift manager. Ryan had a stressful start to the year but things are turning around and he's got some exciting things happening. Cody and Marquee are doing well. They're bummed that my trip to see them didn't work out this week and I'm really sad too. It's hard disappointing people but it's a reality of my physical limitations. My cousin and his wife got their pilots license and bought a plane! How fun is that? I slacked off on my Italian studies. I'm sure I'll pick it up again at some point, I just found myself needing to use my down time to rest more. I'm getting out more which means I hurt more but it's a good trade off for me. I've been watching a lot of Netflix, playing a lot of computer games, reading a lot of books about things that happened during the Renaissance. Walking is harder. Some mornings I really struggle but by the time I leave to take Austin to work I've usually worked the kinks out. I'm really ok so please don't worry. Is this an official return to blogging? I can't say for sure. I just knew until I explained the reason I had not been blogging, I would never be able to start blogging again. So that's it.
Hope you're all well. I miss your sweet comments and encouragement. Love and hugs, y'all. I'll be back... soon, I think.
Posted by Heather at 6:20 AM
Thursday, January 12, 2017
Never would I ever have seen myself carrying a diaper bag as I was approaching *gasp* fifty years old. Yet... my precious granddaughter's parents split up and we went through a hard, expensive battle for custody winning the right to have her spend time with us 2 or 3 days a week. Building a good relationship with her mom has meant that we can, for the most part, have Cosy time whenever we want Cosy time. That means that I find myself packing a diaper bag a couple of times a week.
By the way... there's a whole 'nother blog coming about driving with a toddler who is accustomed to having someone in the backseat with her... adventures in Nana-Life, for sure.
We very rarely carry the diaper bag in with us wherever we're going but usually just have it in the car or nearby so that her stuff is all gathered in one spot. I typically wear a hoodie or something with pockets and I tuck her paci - a must have at all times - in my pocket or purse so it's ready when she needs soothing. For an extended breastfed baby who is used to being soothed by the boob, the paci is a necessity.
So what's in Nana's Diaper Bag?
- diapers, of course, usually 4 or 5 which is more than she would ever use in her time with us
- wipes, used more often but still, I carry far more than we need
- two pacifiers with their holder - the holder is very important, more like the TAG on the holder is important because she rubs that when she's nervous/upset/going to sleep
- two complete outfits including socks, shoes - or slippers
- a jacket or some sort of extra layer, sometimes a blanket
- her school bus from Leapfrog with a couple of letters - another type of security for her
- a bottle of water - in case it's needed for drinking, washing off a booboo or... anything
- toasted coconut chips - she's addicted to coconut
- Brother's freeze dried fruit - usually two bags
- several pair of sunglasses
- Nana's handicapped parking sticker
And... that's it, I think. We never go far (other than that time we went to see Grandma Leta which is still not a very long trip). Most of the time we are less than fifteen minutes from home so anything we're missing we can get to quickly and/or buy. We don't drop her off anywhere - such as daycare or the church nursery - so we always have the diaper bag in our possession. When she goes back to her mom's we have a smaller bag that we all call "the go bag" that goes in between dad's house and mom's to collect the items that belong in the other home or are shared. Typically that would be dirty clothes that she changed out of or maybe a toy that she's particularly interested in having with her. For the most part, if it's a toy she really loves we will buy two so that she has one at each house or we just let her take things to her mom's so that she gets to enjoy it more since she's there more.
Today I'm going to spend a few hours with her this morning and then take her home to nap. Then her dad will pick her up after work and take her to dinner with his friend. I'm sure I'll have photos to share on my other social media!
Have a great Thursday! Love and hugs, y'all!
Posted by Heather at 7:41 AM
Tuesday, January 10, 2017
Thanks for the lovely comments on my last post, y'all! I appreciate all of you who keep "tuning in" to see what happens next. It's such a warm and cosy feeling to know you're out there.
My facebook link is www.facebook.com/hdarby - Or if you wanted to search for me I'm under Heather Nancine Gant.
My instagram is https://www.instagram.com/heathernancine/ If you wanted to search for me I'm under HeatherNancine.
On both my Facebook and Instagram you can view my page without having Facebook and Instagram. If you find that not to be the case, let me know and I'll jiggle some magic button and make it work.
My Snapchat is HGant5. I love posting there because the filters make you look awesome even if you look like poo... which I do about 90% of the time.
If there's something you would like to know about my life, my blog and so forth, leave a comment here or on my Facebook and as long as I can share without compromising someone else's privacy, I'll be happy to. I have blog readers who message me to find out "the rest of the story" and I usually share waaaaaay more than I should. I think what has made my blog interesting to read over the years is my transparency... or tendency to "overshare". I'm an old dog, I don't think I'm going to be learning any new tricks but... I do think I've learned to be a bit more careful not to embarrass or aggravate my loved ones.
Today was a Cosy/Daddy day. We went to Huddle House, the pharmacy, WalMart and then came home and played/watched Frozen. She went home around 1pm. Austin has been working 6 days a week and he's exhausted. I am feeling TONS better than I was a week ago but I'm still not back to my normal level of energy - which is low anyways. We had a bit of snow over the weekend and it's been so cold that there is still a good bit of it left. The cold weather really aggravates my arthritis so I'm achy. It was a good visit and we look forward to seeing her again later in the week. HOPEFULLY on Saturday when Oliver comes to visit!
More later! Love and hugs, y'all!
Posted by Heather at 3:30 PM