Happy New Year

 Once again it's been far too long since I have blogged. The good news is I am doing even better than my last blog, which I just finished reading and think it was pretty accurate in reflecting exactly how I was feeling at the time, sometimes I think I don't do a good job of getting the meaning I intended to come through, hence the word "rambling" in my blog heading.

We just got back from doing a 16 day holiday cruise, a repeat on the same ship we did last year for the holidays with a whole new itinerary. This year's cruise was so much easier for me. I had moments of forgetting (or being unable to) live in the now, due to some stuff I learned was happening at home with my uncle, the cat sitter. But I finally accepted that there wasn't a damn thing I could do way down in the southern Caribbean. And it didn't take me long at all to get there. Stoicism is truly amazing when practiced daily. It has become so much easier to get myself away from useless, destructive thinking. Hallelujah! lol

Don't get me wrong I still struggle, but it is on such a different level now. I am so quick to get myself back on track, the wallowing is minimal. A lot has happened since August. I saw a woman who calls herself an intuitive guide and helps you with releasing emotions. Was supposed to be 45 minutes, was well past an hour and lots of tears were shed but though it was kind of a blur afterwards to remember the details of everything that was said I absolutely left feeling better. She mostly does this through zoom calls, but because of internet issues still being a problem here, she allowed me to come see her at her apartment. I will attempt to post a link to her fb, she is also on instagram if you don't do fb. https://www.facebook.com/TinaMarieHMG

I am still reading a lot! One particularly good book I found useful was How to Change by Katy Milkman. I often blur messages I get from books together when I read them back to back but what stood out for me from this one is when you make the changes you want, it is imperative to understand that the work isn't done. You must be diligent in making sure you don't back slide. She gives great pointers on not only how to change but how to keep a look out for obstacles that may come up and cause you to falter on your journey or cause you to back slide. 

I'm still very flexible as to where my path will lead me this year but I feel like my time in Tennessee may be coming to an end sooner than I may have originally thought, I accept that this is just a thought and may have zero basis in what actually happens. I am keeping my eyes open for signs and trying to listen to myself as to what I want for the future. Right now, at THIS moment, here still feels right, so I will live in the now and find ways to enjoy the present (despite the scary weather (we had a tornado within a 1/2 mile of our mobile home and currently are getting reading for some near zero temps, ewww!!)).

Sometimes I don't feel our presence here is helping my dad and then he will surprise me with appearing to be in a better mood than I anticipate (unfortunately he will also make statements completely 180 from what his outward mood seems to be, as a fellow sufferer of depression, I am well aware of how easy it is to fool people, but I am also aware that I have often felt good but my brain would fight it by making statements to the contrary, almost as if to lure me back to the dark side, so I am not really sure how he actually feels and realize maybe he isn't either. I am sure there is a lot of guilt any time he thinks he feels better, he doesn't want the world to think he isn't still grieving my mom or that he's gotten over it). While I question if we are helping at all, I do still wonder how bad it would be if we weren't, he struggles to find any thing to distract him and I have a feeling alcohol's temptation would be completely irresistable. I know he still has the desire to live and to try to figure out how to do that without her. I wish I had the answers, I also know it isn't' a problem that someone else can solve for him.

I go through times where my flashbacks to my mom are good, just her smile, her laugh and then times where I see the details of her last 2 weeks so clearly that I still wonder how any of us are coping at all. It truly was that horrific. Sometimes I think I am just fine and then hot tears stream down my face, literally out of nowhere, with the thoughts following the tears instead of prompting them. I've become so much more aware of my emotional responses that I have wondered why it is that the tears that hit you by surprise are always so hot. Maybe it's just me, but I definitely notice a difference in my tears, how they flow, the temperature, how hard it can be to stop them when they hit you in the gut out of nowhere. I wonder if this is something that will be with me the rest of my life or if like the pain of my husband's betrayal will eventually just cause a momentary catch in my breath and I will be able to stop the full emotional reaction before it gets to the point of tears and pain.

Through all of this my husband has been there, a constant example of how to live in the now, how to find good in every day, how to relax, how to be grateful. We are so good for each other, or at least I hope I have something to offer him, more than just my love and loyalty. I think I still give him examples of things he can do to continue to better himself, though I struggle to think of anything right now. lol He has definitely been the one carrying the load for the past 18 months. I know I have gotten to the place I am so much more quickly because of him, he is always there to gently remind me when I falter. Even just a simple, "Maybe you need to be reading more" is enough to remind me of the stoic principles I often forget to apply when I am faced with a difficult situation. His patience is endless. 

What will 2024 bring? It doesn't matter, I am here for all of it. I am strong enough to handle the "bad" and smart enough to know the "good" won't last either. Life is a roller coaster, I'm here for the ride, taking a front seat by continuing to work on myself so that what control is offered to me I will be able to accept instead of hiding from it, waiting for the storm to pass, I want to be right there fighting my through to get to the other side. The Serenity Prayer has developed a much deeper meaning for me. Acceptance and courage and of course wisdom! 

I am tempted to make a resolution but that kind of flies in the face of living in the now. Each moment I will decide what needs to be done to make that moment a good one and hopefully those decisions will then lead to future good ones. (like losing the 5.5 pounds I gained on the cruise!! lol)

Stoicism in a nutshell

 I can't believe it's been almost a year since I have written. I write blogs in my head all of the time....at 1 and 2 in the morning. I know I could just write instead of laying there but I wear contacts and can't see to write on my laptop with glasses, so by the time I realize I won't be sleeping, I am already "blind". I like blogging because sometimes that stuff in my head is really helpful and since I am thinking it right before sleep I often don't remember my nuggets of wisdom the next time I need them. Then I have to re-remember how to handle whatever it is I was dwelling on that was interrupting my sleep.

I have been doing so much "work" on myself and I do feel it's helping and I want to write a "but" right now but some smart dude on twitter wrote a really good post about how if you stop using "but" and use "and" instead it can change your mindset, so I have gotten to the point where I notice the "but" and  (see that--no "but"!) yet I still struggle with using "and". I think the whole point was that "but"'s focus on the things you aren't doing instead of the things you ARE doing...

We just passed the year mark of living in Tennessee. And the 13 month mark of my mom's death. I have so many thoughts on grief and grief advice but that's like an entire blog or more alone.

Today I just wanted to get something out there about where I am mentally. I am finding stoicism incredibly helpful and (stopped myself from the but!) at the same time it is hard for me to remember the things I need most when I need them the most. My bad days are when I need to remember the many tidbits of useful advice, I do find the time between forgetting and then remembering is getting shorter (often thanks to reminders from my husband). In other words, I don't stay down long enough to get truly depressed anymore. I do get stuck in anger a little longer than I'd like. I know this is a journey I will be on until the day I die. I was born with a brain that leans toward negativity but (I think this is a good "but" so I will let it stay) I also very much believe that I, alone, have the power to change that. I believe it's possible, I also believe it's not easy, I'm not one to quit so I have faith I will get there.

Some of my favorite things I have learned come from The Seat of the Soul by Gary Zukav and his follow up book The Heart of the Soul. He has a unique take on why we are here. He calls it Earth School. And there is no failing. Everything we encounter is a lesson meant just for us. And if I am getting the right message, what we need to learn is that the only power that matters is found within us, external power is just a distraction. Again, this would take a blog (or a book!) to explain fully. 

When I look at my life and everything that happens as lessons, it's a little easier to accept things I don't like. And stoicism really helps with that too. Things aren't good or bad, by themselves. It's us who assigns those labels. (Many examples are given to illustrate how true this is, if you don't look at things from a personal perspective, it's much easier to see that.) Stoicism also reminds me that we can only control what we can control and one thing we ALWAYS control is our reaction to things/people. We don't have to react any particular way. We don't have to get angry, hurt, sad when someone "wrongs" us. And if we do (we are human after all) we don't have to stay with that reaction, we can recognize it and even analyze it to see what we are really feeling and it usually comes back to fear. I have been doing A LOT of work on being more emotionally aware and I have found lots of fear behind many emotions that I didn't initially perceive as fear.

I think my good days far outweigh my bad days (no!! NO "BUT") see...I can't find a way to say "and" here so I will just stop there...my good days outweigh my bad days...and when I have a bad day, I am quicker to "check" myself and remember the progress I continue making. 

My goal is no longer to be happy, I realize that's a completely unrealistic goal..NO ONE is always HAPPY, but (yes but!) I can learn to ALWAYS be at peace with whatever is going on, by accepting that even when I don't feel "happy" I can live with whatever I am feeling knowing that it is something that I can learn from and that it is only temporary. Another stoicism: nothing lasts;good or bad, change is always happening.

And most of all I am still trying....try, try, trying to live in the NOW, I do believe that is the key to being successful in my journey--be present right here, right now for the good, the bad, the boring, the exciting, the whatever because now is the only thing we are guaranteed.

Huberman grief recovery

 I listened to Huberman's podcast on Grief again. The first time was just before or after my mom died, I don't remember exactly as much of that time is a blur. I only watched about half of it, his podcasts are almost 2 hours long and his info can be a bit overwhelming. I love knowing the science behind stuff but he (like me!) tends to digress a lot. He also delves WAY into detail, which again I like but 2 hours is a long time for me to just listen to something. 

So now that I have had some time to digest it, I am going to Cliff Notes it, not just for you, but for me to refer back to when I find myself falling back into unhealthy, or rather unhelpful, ways of grieving.

I am going to preface this with the usual, there isn't a right or wrong way to grieve. We all grieve differently. His podcast is about the most "adaptive" way to grieve and from what I gather what he means by that is there are some things you can do to aid in moving the grief process along to a less painful place. And there are ways that may prolong the amount of pain or the intensity of that pain. It is up to the individual if they are content to wallow or if they want to feel better, no judging going on by him or me, just providing info if you want to feel better.

When we lose someone (or a pet or thing, as he points out nearly every time thus making the podcast longer than it had to be...maybe just state in the beginning that he's talking about all grief, not just the loss of a person) the grief we feel is proportional to our connection to them. Which seems quite obvious, right? It's also related to how often you saw them and your physical distance from them. He refers to these 3 aspects frequently. Space, time and closeness. He goes into great depth on the scientific reasons for how his tip on making recovery less painful is supported by research. I'll spare you all of the mumbo jumbo and sum it up by saying our brains have different storage places and pathways for memories for loved ones. He states that the pain we feel when we lose someone is because of a yearning for something we can never have. It's the brain "reaching" for something, he compares it to being thirsty and a glass of water is just out of your reach and that you ache, feel frustrated, feel anguish...because you can not get to it. It's the same type of neural pathway for the loss of a loved one. It's unquenchable. So how do we deal with that? 

He says we must not deny the depth of our connection to the person, we  must not lie to ourselves that they weren't THAT important and try to move on too quickly. Though that may seem like an effective way, it doesn't really work. Instead we should spend as much time as we are mentally able (5- 30 or even 45 minutes every day or every other day) actively thinking about how important this person was to us....BUT....not by remembering the past. This is the key, and obviously very difficult thing to do. I have been trying to figure out how you think of someone and NOT think about a memory of them, it seems natural and the only way but it isn't. To lessen your pain, lessen your grief, we must create a separation of our love for them from our memory of them. What happens in our brain, proven by MRI's, is that when we think of them through memories our brain starts trying to figure out when and where we will see them again...which is what causes the yearning and thus the pain, because it can't answer those questions, it's an endless reaching. If we can think of our love for them and create a new place and time for when we will see them that yearning will be satisfied. He calls this remapping our relationship to them. We literally need to remap what our brain does when this person comes to mind. I can picture it in my mind as, I think of my mom and remember her smile at a particular event and my brain sees her image and starts a search, a never ending quest for when and where I will get to see her smile like that again, and, of course, the answer is I won't. So I have to create a new path for my brain, I think of my mom's smile and it makes me remember when I was on the top of Mt, San Jacinto and she spoke to me in the clouds, now I can associate her with a place and time that still can exist, I just need to look to the sky.

All of this is my interpretation of what he's trying to say. I could be way off base on how to do it. He repeats over and over that we have to honor the depth of our connection without relating it to the past. My way of doing that is to think of my love for my mom and think of her as here, but not in her body state, so I solve the problem of where and when. She is here, right now. I don't need to see her because she is here. I don't need to wait for my death because the when is now, she's already with me. 

I am guessing that once we can start to think this way, the memories will be easier to bear. I have found that they have been getting easier for me. I still relapse into moments when I "can't believe" she is gone, the denial. I think I have resolved the anger, but I realize the process is a tricky one and I can go back to that stage again as well. I am not sure I am quite at the acceptance stage. Not fully anyway. I also think I realize it's ok to cry any time I want to, I don't have to feel like I'm ok means I never cry about her being gone again. I know that I don't need to compare my grief to anyone else's but that's a human thing to do. I realize I may be more inclined to try to move through the grief and not feel stuck because of how I have spent the last 2 years. At the same time, I still haven't been able to listen to the voicemail I have from her. Not yet.

My mom was so proud of me for learning mindfulness and meditation and stoicism. Learning to bring gratitude into my life every day and stop focusing on negativity. I know she wants me to continue that. Huberman also discussed that there was a study that showed people with stronger vagal tone tended to experience grief "easier" (not sure that's really the right word- they were less likely to have prolonged or complicated grief). He went into great depth on vagal tone and parasympathetic and sympathetic responses, but basically what I got was that people who learn to control their breath, which helps control heart rate, tend to handle grief "better". One of the things I have been doing the past 2 years is a lot of breath work, not just mediation but trying to play around with longer exhales, etc. I am hoping that it is helping me.

He also mentioned studies relating to cortisol levels and the ability to process grief. In brief people who don't get enough good sleep have cortisol spikes in the late afternoon or early evening that can affect your ability to grieve. He refers you to a podcast on improving sleep, but that will have to wait for another day for me, although I know I could definitely use tips. One tip he did give that he really insisted is essential is to within 30 minutes of waking to get outside and get at least 10 minutes of outdoor light, sunlight is best, but just being outside is good enough and if you can't get outside to expose your eyes to as much light as you can indoors, it is crucial for regulation of cortisol and other circadian rhythm stuff. It certainly seems like an esy enough thing to do...so I guess I need to start a new habit...get my butt outside ASAP.

I think I am doing ok most days, though I still have my fair share of crying, but again, I am not sure I should look at that as a gauge of anything. 

One thing I still struggle a lot with is control. I find myself constantly reminding myself of what I can control....and it's only one thing....how I react to things. That's it. I can't control anything else. There are annoyances in my life and the only thing I can do is control how I react...I make them an annoyance by reacting to them that way, I just need to brush it off with a "It is what it is" or if it's something I can control and change than I need to change it. I also find myself worrying about my dad and my sister, wanting to help them, to take away their pain, but again...not something I can control. My mom's death sucks, it's going to cause all of us pain, and the only thing we can do is whatever the other person asks us to do, whether it's just being there or a hug or an I love you. There's no magic wand, no pill to take, we just have to hope that time will start to make it better, but still understanding that the grief will always be a part of us now.

Link to the podcast https://hubermanlab.com/the-science-and-process-of-healing-from-grief/

Perspective

 First I would like to start by saying I am a work in progress, and most likely always will be. Living the life I aspire to is not an easy task, very few have ever succeeded. But it's about the journey. It's about trying. It's about failing and starting all over again, each time from a slightly better place...or if it's a worse place, so what? Pull yourself back up and start all over. The goal, for me, is to live in the now. 100% completely. It's a lofty goal. Like I said few have ever been successful. I think the Dalai Lama may be one of the few living examples. But, again... being 100% successful isn't the point. The point is to just do better. The more you try, the longer your success before you falter again. And the longer you keep trying the better you get at catching when you are failing and you can get back to it quicker. It being living in the now. And in case you have already forgotten - I am a work in progress. Hell, I have been failing all week. I will fail again today. It's not pessimistic, it's fact. I am going through an extremely stressful time, so any time I can live in the now, even for a minute is a huge success! 

It's just past one month since my mom passed. Two of the worst weeks of my life. But also the most enlightening. I believed I was a fairly strong and resilient person, I mean I know I have mental health issues, but I have always gotten through my depressions and my anxieties and am well aware of the strength that takes. But those 2 weeks...ugh...there was just so much coming from so many different angles, it felt like TOO much, but here I am. And I won't downplay the significance of that. All of us our stronger because we got through it, that doesn't mean we weren't exhausted in every way imaginable. But we are here, now dealing with the grief that only those who have lost someone this close can understand. 

It's so cliche to say we all grieve differently and at our own pace, but it is so true. Hell, I grieve differently every day and sometimes I think the worst is behind me and I'll feel tears coming out of my eyes that I didn't even know were there. I don't call it crying because, I literally don't know it's coming and have no control over them...they just spill out, it's a different sort of tear. It feels different than crying, I'd even bet that the composition of the tears is physiologically different. 

And then, as happens, the world keeps going...and all the shit that was there before this life changing event is still there..."other" people dying. The mass shootings and the closer to home deaths. And they all still affect me, I've cried over so many strangers' deaths since this gun epidemic has hit our country. But this past week I had some more personal deaths. An aunt passed unexpectedly from a heart attack. She was only 58, just 5 years older than me. It gave me perspective. Yes, my mom died much too young, she had so much life left to live and so much more love to share, but she also had over 20 years of living after retiring, so many people don't get that. Perspective. 58 is way too young to die. But it happens every day to families all over the world. Does that make my mom's death easier for me? No. But it gives me perspective. I need to keep living, which I know for a fact she would want, because I have no idea how many more days I have. Perspective. And still after that news, I continued stressing about things I can not control. Will my house sell? How will the long drive with all my pets work out? Will the cats use a litter box while we are traveling? Will their anxiety harm them permanently? Will they get along with the new cat? So much worrying...why? I am not guaranteed tomorrow. Just focus on today. Find the gratitudes, the happiness that TODAY offers. It's hard. It seems so simple but society aids in the difficultness of this task. We are groomed to worry. It's difficult to break the cycle. But not impossible. 

But wait there's more. A former coworker, her daughter and her mother were all killed in a car accident this week. On their way to Vegas for some fun and in an instant...gone. Anything she may have worried about, suddenly irrelevant. Perspective. The news crushed me. It is so horrific, so unimaginable. I'm not sure of her age, but she was YOUNG. I am not even sure if her daughter was school age yet. YOUNG! Perspective. That's life. Everything is so important, until it isn't. I really started questioning all of my worries. Would any of it matter if I died? Of course not. What will be will be. 

 I recently stumbled upon something on stoicism, I haven't had the time to read up on it a lot yet but I think I am really going to enjoy the ideas behind it-it goes hand in hand with The Power of Now book I recently read. The article was talking about new approaches to therapy. Why didn't I book mark the page?? AHA-- I looked in my history and found the page! I will link it at the bottom! So the premise is to imagine the worst case scenario (you see why I like it--right up my alley because I already DO that!) Make three columns, Define, Prevent and Repair. Define is what is the worst possible thing that could happen for the situation, Prevent is what can you do to stop it or minimize that from happening and Repair is what would you do IF the worst thing did actually happen. I do a lot of Defining in my life but I never get to the other two. And I think part of that is the slightest desire to WANT to be miserable, to want to worry. It feels safer to worry. I have told myself that when I am happy things go wrong but the truth is things go wrong when I'm happy, sad, angry, asleep, awake, bored...in other words...whenever. Shit happens when it happens. My mood does NOT affect it. So why not do my best to find the good in the now and just be happy? Reminder.....I am NOT there yet! I hate to sound preachy that's why it's so important for me to remind you, the reader, that I am just like you...imperfect, fallible and searching for a way to live a more content life!

I find this "perspective stuff' circulates throughout our lives and most of us overlook it. There are constant reminders in our television shows, our movies, our memes to live in the now, that a lot of things are out of our control and that life is short. Something we watched recently made me realize how much of what we worry about now isn't new. George Carlin's American Dream on HBO, especially part two is the strange place I was reminded of this. He was doing his act on this stuff in the 80's and 90's. Political scandals, the gun problem, abortion rights, climate change...none of it new. Most of it worse (ok ALL of it worse) but not new. I encourage you to watch it because his outlook on life was really interesting. He treated his life as an observer on earth, just watching what other humans did and trying to keep a healthy perspective about how insignificant we are all. 

And that's the truth. Our human form is so insignificant. We are here such a short time relative to the existence of earth and the universe, and our individual imprint is just as insignificant. Our "energy" who we really are without our human body is all that really matters, one day we will return to the universe and observe this silly existence on earth for what it really is... a blip of our true "life". Some of the authors I have read refer to the planet as Earth school. Our energies are sent here in human shape to learn something, for each of us it is different and for many of us we will keep being sent back until we figure it out. That's the elusive "meaning of life". My intent is to figure out how to get through this blip in a more enjoyable manner than an anxiety filled existence, worrying about stuff that is never going to matter once I return to my energy form! 

I know that last paragraph sounds a little out there, a blog is just too short to really explain my beliefs about souls and energies and higher powers. 

The bottom line is perspective. No matter what your beliefs are about whether there is or isn't anything after this life on earth, you have to agree that once we leave our human bodies...none of the daily worrying we do is going to matter.

Not quite part 3, but that may never come

 Yesterday was 2 weeks since my mom died. Just wanted to write something quick. The past 2 weeks I have spent super distracted. That's good. That WAS good. The distractions are drawing to a close and reality is setting in. Last night was tough. It just hit me. I went to bed and thought I was fine. And then BOOM. First it started ok, just thoughts about how I wasn't ever going to be able to call her again, or see her again, hard for sure. Tears of course. But then I started remembering the LAST time I saw her. Not good. Probably not something I should ever do. I don't think there is any value in remembering those last 2 weeks. Especially the first 5 days. Those images. Ugh. 

I realized that I dealt with it a little differently than my sister and dad. I absolutely refused to see that ...body...as my mom. Even when it talked and yes I said "it". I am sure there's a psychological term for what I did and I have no idea if it was healthy or unhealthy but I completely separated that body from my mom. So I don't look back and think that SHE was begging for help. Or even that she was in pain. I can't. But now...now I am. Now I am realizing all these images that are flashing before me are of my mom. I don't even want to write what those images were. I want to purge them but I don't think writing them down will do that. Part of me wants to keep thinking it wasn't her. I have resisted therapy for years now, knowing that my years of therapy gave me all of the tools I needed to deal with my anxiety and depression. This is different. I haven't ever dealt with anything like this so I have no idea what I should be doing. Is it best to just do my best to forget and not overanalyze why I treated my mom like a nameless body? Or should I be trying to deal with the horror for the reality that it was? I really don't know. Every fiber of my being wants to forget and never see those images again. Can I just do that? I know if my dad pursues this legally that won't be possible. And I fully support whatever he decides. I have been trying to figure out what my mom would have wanted. But I have learned that we don't even know what WE want most of the time so how can we possibly accurately guess what someone else would want? We can't. I don't even know what I want. Part of me thinks it would be a waste of time because our legal system is only interested in what makes money and not about preventing further injustices. 

And that's the only reason I can see to go forward. I believe with all my heart that this hospice company has no business taking care of people. They do NOT have safety, comfort and dignity in mind when they are treating people. They only care about money. What will be paid for. And then to not even be able to answer the question of "What does medicare consider "resting comfortably"?" I know I never wrote part 3 and that's where that super frustrating conversation occurred with David from Caris. I wanted to know a time frame, because every time the nurses left my mom stopped being comfortable. He says medicare only covers the nurse visit until they are able to get the patient "resting comfortable". If I (or a caregiver) has to keep pushing a bolus pain med every 15 minutes, that doesn't sound like resting comfortable.Shouldn't the patient's continuous dose be increased until boluses aren't required so frequently? He couldn't answer these simple questions. He even said he was trying to "look up" something specific. THIS is their fucking BUSINESS...how do they not know these answers off the top of their heads? She wasn't their first patient. But I digress....my point is...I am an educated former health professional and I couldn't get my mom the care she needed, how is anyone else supposed to? Don't I owe it to them to get these answers so they don't have to suffer? Is it selfish to think pursuing it will only cause my family more pain and won't actually make a damn difference or is it realistic? I just don't know.

The last week of my mom's life was peaceful.Only because we switched hospice companies. It was the way it is supposed to be, drugged up while waiting for the body to realize that the soul has gone and it's time on earth is done. Was it hard on us? Of course. A week is a long time to sit and just wait. But thankfully it wasn't hard on my mom. She was finally resting comfortably. People always talk about the loved one waiting for something or going when they are ready. I don't believe that anymore. My mom didn't have a reason to wait around. We all said our goodbyes many, many times. Maybe she thought if she hung around it would be easier to let her go, maybe it was? I think the body just fails when it fails, how hers managed to last more than 2 weeks without food and nearly 2 weeks without water is absolutely amazing, especially a body riddled with cancer. I don't remember if I mentioned that they finally did a scan when she was hospitalized (again, no idea why it wasn't done after radiation was finished just to see if it had helped before starting the higher dose chemo). The scan was only of her abdomen, it showed it had spread to her kidneys, liver and into her spine. How she was only taking a few Percocet a day is a testament to both how strong she was and how stubborn. She didn't want to abuse the pills and she didn't want to be constipated. They could have given her better meds, pain patches, many other choices, but she never complained. it is heartbreaking to know that at for at least the last 6 months she was in more pain than we could imagine. She died 6 months to the day of her diagnosis (which was about 3 months later than it should have been). It still all feels so surreal. For an overthinker who imagines worst case scenarios for everything, I just never thought about my mom dying. A few years ago her an my dad were in a car accident that easily could have killed them both and even then I spent a moment considering how awful that was and how close I came to losing them but I pushed it out of my mind and figured I had at least 20 more years with them. I guess imagining a parent's death is just a road my brain doesn't want to travel. Well...here I am ...and now I know why it didn't want to think about it....because it fucking sucks!!

But wait there's more

 I know I forgot at least one thing yesterday so let me start with that. The bed. From the minute we got it, it acted up. The up/down buttons didn't want to work. We thought it was a loose plug but it kept happening. No big deal? Well when someone is pain and the bed is jerky and you never know if it's gonna drop 3 inches because it finally catches up to all of your pushing the button..yeah that's a big deal. Well a couple days in we realized it was a frayed cord. So now it's a safety hazard. We were promised on day one that this company would  provide "safety, dignity and comfort". Now I can't blame them for my mom wanting to be naked but I can sure blame them for failing on the other counts. (There was finally an offer to replace the bed..maybe Saturday, maybe Sunday...but we didn't want to disrupt her to move her body to a new bed)

I left off just after the bent needle problem was solved. I can't remember the timeline on running out of Ativan--was it Friday into Saturday or Saturday into Sunday? Eventually I will call the pharmacies to get dates filled and quantities, but seeing that for some reason we were now going 3 different places, that's a few too many calls to make right now (did I mention that cell service is minimal inside the house? One more thing to irritate me). The conversation I recall is that I only have one ativan left. We were told to be giving 4 at a time every 4 hours, when we realized we were getting low we changed to 2 every 2 hours and then just held onto the last 2 for emergency. They are still insisting they don't think the ativan is necessary that the haldol should be enough...well we know otherwise..we are watching it in real time. I pretty much beg to at least get like 6 (why I chose that number? Because my brain was not doing math without sleep) I explained that I knew it was a controlled drug but that we really believed it was helping could we just get some until they could see her. Again we are all thinking the end is imminent because that's what they keep telling us. Never occurred to ask for liquid or demand more than a few pills. They ended up calling in 24, which is just 6 doses..one day if given every 4 hours. We send my uncle to get pills, he comes back with just haldol...apparently the pharmacy didn't fill the ativan because it appeared we used it too quickly...the bottle had said 2 tabs every 4 hours. I tell the nurse maybe call it in for a higher strength to get around this, she doesn't do that but does increase the quantity and directions so the pharmacy now gets that it's hospice, just fill the damn thing! (They okayed 84...we didn't end up using any because the new company got us the liquid, which she didn't even need until the death rattle started) Why is it so hard to understand a hospice patient isn't going to become an addict??

So back to the pump..nurse left thinking everything was better. I think she comes back Saturday night but may have been Sunday morning (gotta check phone records) and makes another dumb statement "I realized that maybe the cartridge was empty because it should have run out by now" So why not call us? Why not come back? Again we had another several hours of her only staying rested for brief periods with boluses every 15 minutes. We are taking sleep rotations but we are still exhausted, when she wets the bed we need all 3 (sometimes 4, including my niece) of us to change it and it makes her extremely uncomfortable. She moves too much to use the disposable pads, so every time we have to change sheet out and try to wipe under her with a towel. Not an easy task under great circumstances, let alone with an old guy, a weak girl and a strong girl but with a bad back. So she looks at the cartridge and is sure it looks empty and is clearly confused because the pump still shows that it has 160 or so mls of liquid remaining. She changes out the cartridge and gets mom "resting comfortably". She is so sure that the problem is now solved. At some point there was also some pinched tubing she tried to blame. Did I mention this nurse is 70 and claims to have been doing this since she was 13 (my sister and I are both hoping there was some actual formal education in there somewhere but now I wonder). She decides to keep her on the same dose (2mg/hr 1mg bolus) because she thinks she wasn't actually getting that dose and doesn't want to raise it to the dose she was able to get approved (3mg/hr and 1.5mg bolus)because the company might balk if she needs to raise it again. The logic here is clearly flawed but who is going to argue with her? Our brains are fried and logic isn't our strong suit right now.

Now mom is not getting anywhere near as agitated as when she was trying to get out of the bed Wednesday night but she is clearly in pain. She's moaning and asking for help and we feel like we are failing her. We are at our wit's end and beyond physically and mentally exhausted. And we are headed into Sunday night..day 5. My niece has a hotel room and her boyfriend is with her so she has been able to get some real sleep, thankfully. Dad heads into his room and my sister and I prepare for another night, hoping this empty cartridge thing was the problem and that finally mom can actually rest comfortably for more than 6 hours. But still we are told to press the button every 15 minutes and we are still to give the haldol--there isn't any lorazepam I think we hadn't gotten a chance to get back to pick up the new bottle.

I am not sure what time shit started to go bad again. Maybe we had to change her and tried to do it without dad, I honestly don't remember. But it went bad, lots of begging for help. We called the nurse she made a comment about being there faster if she didn't have to put her uniform on if we didn't mind...of course not just get here, we knew she was an hour away. We opt to try to get some crushed percocet in her until she gets there, because why not?? (again not realizing how bad it tastes or that we could have had a liquid)Mom spits a good bit out and drools some onto her chest...so much dignity. She finally arrives, more than an hour later...and in her uniform..why?? She starts making more Dr. Kevorkian comments. She's making excuses for my mom's pain. Blaming the cancer, that it's bone pain, that it's in her brain...anything but the pump which my dad and both of us think isn't working despite making noises and the numbers dropping. It is possible to act like it's working and not work but none of the nurses want to admit this. I think the nurse may have even left and come back. This could be why she didn't want to come back again at 3:15.

So dad is sleeping through all of this, don't know how, but it's a blessing. The nurse says "I think I am going to have to give her a big bolus to get her past this" she's blathering about how once the pain gets ahead of you it's hard to get on top of it again, yammering on and on about how she was trying to get the does increased because she's a large lady. She says she asked for 10mg/hr, why she would request such a big jump? No idea. Remember she hasn't even tried the 3 at this point. She keeps going on and on about my mom being a large woman, my mom has lost 40 pounds, she may have been considered large then but certainly not now. She reiterates about giving her a big bolus, that she needs to reprogram the machine for a one time large dose and then she'll change it back. My sister has her head in her hands sobbing on the sofa. I am starving, I am frayed to the breaking point and feeling beyond helpless. We have both said something to the effect that we just want out mom to be out of pain. The nurse feels compelled to add "I could lose my license for this". Until then I assumed this large bolus was approved, it's only now that it dawns on me what she is saying and that she wants our approval and basically agreement to be silent about what is going to happen. I am not sure how my sister feels about this, I ask her if she will be ok with this. Let's be clear we know this dose is NOT to make her comfortable but to end the suffering. My sister can't respond, she is still just sobbing into her hands. I only say "I am going into the kitchen to get a banana, I 'm not seeing anything". 

Over the past 5 days my dad has repeatedly talked about how wrong it is that we put animals down but that our loved ones are forced to die like this and that should he become terminal the first thing he would do is research what state he could move to so that we won't ever have to go through this again. I think I know what he would do. I thought I knew I would do it, but my mom didn't get a say and I start to wonder what I just consented to, even if it wasn't blatant, I may have not asked for it but I certainly did nothing to stop it. My mind is racing but part of me understands that soon it won't matter it will all be over and I can figure out how to live with it then. I have no idea how long this takes. Will it happen while the nurse is here? But nothing happens. She finally settles but she has been given bolus doses that when all is said and done add up to 34 mg. THIRTY FOUR. The nurse had stayed to be sure she stayed comfortable just as she was about to leave she stirred again, the nurse had to adjust her again, she waited again for her to settle..a much shorter time this time, probably afraid she'd never settle. And she was right. She left us with the impression that due to the massive amount of boluses nothing more would be needed. Less than half an hour after nurse is gone mom was agitated again. it's 3:15 in the morning on Monday, when the nurse left about 2:45 she was planning to get another needle in the morning, blaming the injection site rather than the pump. We had already used the spare needle to replace the bent one. Why no one thought to bring another replacement in case it happened again?? Maybe because it was the weekend? 

The regular nurse had one at her house and this on call nurse said she would stop to get it and come back when we had called her again at 3:15. I know I assumed she meant ASAP. Even if she was already half way home, I still didn't think it would be more than 90 minutes until she returned. She didn't end up showing up until just before 8 am (when her shift ended) and she showed up WITH the other nurse. 

Let me tell you about those 5 hours. Oh God, I barely remember them and yet how can I forget? My dad slept through most of it...who knows how...shows you how exhausted he was. Both my sister and I are hysterical that we essentially (and I say this with no admission of guilt because never did either of actually consent, we just ignored what was going to take place) tried to kill our mother and failed. Plus she's still in pain. She is screaming out DOUGLAS (my dad's name) she's screaming HELP ME..and we are trying to console each other. Cycling through thoughts about our role in this "crime", wondering why my mom won't just go be with her loved ones, wondering how she can still be in pain. Questioning god, life....everything. And waiting..waiting for this nurse to come back, waiting for my mom to die, how can she not die with all that dilaudid. We can't even sit with my mom anymore. It's like when you just have to let the baby stay in the room and cry itself out because it's too dangerous for you to be around them...we couldn't help her and we couldn't stand to see her this way. We sat about 10 feet away with our backs to her, crying to cover her cries. And then my dad came out. My sister went outside and I told him everything. I knew he wouldn't judge us and he didn't. I think it may have hurt him more knowing we were put in such a horrible spot.

I tell you all of this because if one thing should be clear....that pump was NOT working.

Around the nurses replace the needle, they try to get her settled. None of us can even be in the house. We are inconsolable. I had called my husband at 3:30 hysterical, hyperventilating. The word surreal used over and over. Never in my wildest horrors could I have imagined it could get worse than Wednesday night.

When the nurses arrived they said that David was willing to put my mom in a nursing facility with 24/7 care. My dad jumped on this. I did not. I took the phone from the nurse, my dad had wanted to talk to him but I thought I could be the most levelheaded of the 3 of us, my sister was literally in a fetal position on the driveway, sobbing when the nurse pulled up. He started with his southern drawl and sounded condescending not empathetic and I told him I was only going to accept one thing 24/7 care in our home. He promised us safety,dignity and comfort in our home and that is what I wanted period. He said he would talk to corporate and see what he could do. I said well you let them know this isn't a choice that we had video of my mom screaming and I would release it to twitter and that I had already contacted the local news investigative team (who I still haven't heard from, but with this reception..who knows if they tried to call) and we also planned to sue because we were going to need years of therapy to get over last night.

Meanwhile my husband had taken it upon himself to look up the number and he also spoke to David. My husband is very calm...usually. He would never f bomb someone...he told David he better get a new fucking pump to our house STAT, and reamed him  for 10 minutes before hanging up on him.

Apparently David had tried to reach me after this and left voicemail but thanks to horrible reception I never got it. I called him on the way to get the newest ativan script (that we should have had the day before) and I ripped him a new ass...I also dropped the call, so I don't know how much he heard. I don't have the energy to go into that call today but it's where the "resting comfortably" title comes from.

There's a bit more about the nurses either lying to be or just being stupid about the new cartridge and pump and what dose she was now on but that'll have to wait for the final part.

The only thing that matters is once that new pump was hooked up...my mother has not been uncomfortable once, not even during 2 sheet changes. So I guess it WAS the fucking pump. Which Dr.K nurse should have figured out on her own because her handy work didn't work.

She was resting comfortably for real on a dose of 3mg per hour with one bolus of 1.5 mg. A total of 4.5 mg every hour. The other hospice had her getting 3mg/hr with four 1.5 mg doses...9mg every hour plus haldol and ativan and percocet and she was NEVER comfortable for more than 30 minutes. It's almost like the pump wasn't working... 

The descriptions above are all my perception. I can not speak to how my dad, sister or niece feel. I just know how incredibly devastating and horrifying and SURREAL this has been. And after the past 4 days I now know it didn't have to be this way and this way is still hard...really hard. It's Friday 1:19. We are almost 61 hours out from when the death rattle started....it's supposed to be 24-48 hours. That's my mom...."don't rush me"

Resting comfortably

 As I sit here writing this my mom is lying in a hospice bed nearby dying. I have grown used to the sound she is making, known as "death rattle", to me it is a coffee maker brewing in the background, I can't think about it being the sound of her gurgling on her saliva because she isn't swallowing often enough. 

The word surreal has passed through my mind and my lips more times than I can count in the past 8 days.

It's so hard to believe that 17 days ago I was talking to her on the phone, telling her that on my future calls I wasn't going to talk about her cancer anymore, I wanted to go back to our random chit chat. I did tell her that my husband and I were still talking about selling and moving onto their property but weren't sure if she'd make it that long...her reply? "Some days I think I will and some days I am not so sure".

I am not going to go into what a shitshow this has been since she first noticed a bump inside of her vagina, way back in September. So many things that could have been done differently and perhaps affected the outcome. She was diagnosed with cancer on December 20th, I think at first it was considered Stage 2, but after the removal of what was no longer a bump but instead a mass, it was discovered in a lymph node in her groin and now it was Stage 3. While waiting to heal before starting radiation, she felt another bump in her abdomen and had to demand a scan (why a full body one was never done....we will never know). She was upgraded to Stage 4 after just one dose of radiation. It was in her lungs, now she would need chemo. She had to request chemo and radiation be done concurrently, she was afraid delaying radiation would be a mistake. What ensued next was horrible, maybe another blog I will detail. She still remained hopeful, we all did. What else do you have at this point? We kept waiting for another scan to see if the radiation had worked but they wanted to do chemo first. She reacted very badly and ended up needing to skip doses here and there and she could tell the tumors were growing. Her chemo was supposed to be every 3 weeks, the week before her dose scheduled for the 10th she stopped eating again. She barely drank one Slimfast a day. She had stopped responding to the silly gifs I would send her to make her smile on Friday the 3rd. Sunday night she fell and my dad had to take her to the hospital and then it all went downhill fast. At first he didn't think I needed to come, my sister had already gotten there. But then the doctor gave them the news about the scan they finally did. Just her abdomen area. It was bad. Really bad. It had spread to her kidneys, her liver and her spine. There was no way they would be doing chemo that Friday. Her calcium levels were high, potassium low. Because of the liver being involved they didn't think the calcium could be brought down, but by Wednesday when she was discharged it was only slightly high. My dad asked that awful question "How long?" hoping to hear 3 weeks minimally, the doctor's face said otherwise. I booked a flight and was there by Tuesday (talk about another blog story, with the flight delay, etc). 

At the hospital she seemed to know me, when I said "I'm here, you can go momma" her reply was "Don't rush me". She just appeared to be in so much pain and I know from day one she didn't want to live unless she had a good quality of life and since her surgery she only had 5 pain free days before the radiation began. She was begging to be brought home and because Monday night she had tried to bite nurses 2 different times, my sister stayed overnight with her. Neither of them got any sleep. 

Finally it was time for discharge, the hospice bed was supposed to get there before her and even though she was discharged a little late she still got home about a half hour before the bed. We got her on the couch, stripped her clothes (she insisted on putting pants and a bra on before discharge despite the pain she knew it would cause, so we had to change her into a pj shirt) She never wanted us to see her naked and was not too thrilled with this, we managed to do it with minimum exposure. She arrived home around noon on Wednesday with NO medications. Soon after David from Caris showed up to go over paperwork. He "forgot" the handbook but assured us the nurse would bring it in the morning. He never gave us a number to reach anyone if we had problems. This should have been our first red flag. But having never been through this I had no idea what to expect and assumed she'd be fine overnight once we got her medicated. We had told David that mom had a bad reaction to morphine so we wanted something in place of that, as well as the Percocet 10. He knew we had a few Percocet 5 on hand and nothing else.

My father and I ran to the Walmart (keeping in mind everything is a minimum 30 minute drive). The pharmacy didn't have the proper billing info, luckily I knew this had to go through hospice and not his regular insurance because of being a pharmacist. I had to google to find a number and at first got a Caris in a different county but because it was before 5 she was able to transfer me to the correct one. All we wanted to do was get this med home to her to get her comfortable. I headed off to get bananas and call my husband  I  broke down in the produce section while on the phone. Not one but two different women stopped to help me. One spent at least 5 minutes with me calming me and giving me advice. They will never know what that meant to me, and the rough stuff hadn't even started yet. So back to the pharmacy I go, when they told me the doctor had not written the rx for the pain med correctly, I started sobbing at the register. I tried calling Caris again but now it was an answering service who couldn't connect me to the nurse I needed. No one had explained how after hours worked. I managed to get the right phone number with another google search, explained the problem to the nurse and the pharmacist called her. I sat waiting and wondering if it was being handled. I finally got the courage to ask if it was straightened out, thankfully it was. Or so I thought, when the pharmacist went over the drugs with me, only Percocet had been called in, no Dilaudid or any other pain med. For some reason there were 2 antibiotics, potassium, a sleeping med and an anxiety med. Not all of them typical hospice drugs. We didn't give her the antibiotics or potassium, why would we? This is end of life care. UGH. We finally get home at 7. We get 2 Percocet in her and she rests comfortably on the sofa for maybe an hour or so while my uncle who had driven all day visited. He never got to spend any actual time with her. And then all hell broke loose.

This will be the hard part to tell. This isn't supposed to have happened. This is what people don't realize we went through. She did NOT want to pee in the portable potty, we tried to accommodate that request but she got too weak. I think she may have used the real bathroom once, portable potty twice and then she was peeing as soon as she stood so we realized we couldn't let her out of bed anymore. Having anything in her bladder was extremely painful due to the tumor location and the radiation burns. But she would NOT pee laying down. She couldn't wear a diaper without pain and she would not pee on the disposable pads. "It's disgusting" she would yell. So she fought us. And I mean she FOUGHT us. Let me paint the scene. Once she peed herself we had to take her pj shirt off and she wouldn't let us put another on. Remember this woman is MODEST. She would be mortified to know her children saw it all. But she didn't care. She just wanted out of that bed to pee. The bed rails have a gap at both ends of around 10-12 inches, she would scoot on her butt, using her elbows to each of the four openings, whichever wasn't being guarded by either me, my sister or my dad. And she would try to stand up. Remember this is painful for her yet she did it anyway. She was strong. How was she so strong? She had barely eaten anything in nearly 6 days. She pushed her back against my dad and her feet against my hands and arms and it was all we could do to stop her from getting past us to stand. She'd act like she had given up, her eyes were closed and then she make a mad crablike dash to the unprotected opening, where only a pillow was keeping her in. We would readjust and this continued for an hour. We couldn't get her to take her pills. We had to call a nurse who was an hour away. They had suggested we try applesauce or pudding. My mom reached into her mouth grabbed the apple sauce looked me dead in the eye and wiped it on my cheek. She was calling us names, telling us she hated us, telling us we were hurting her and begging for us to help her. And we could only try to keep her in the bed. When the nurse arrived even she had a really hard time getting the percocet in her. After what seemed like forever she managed to get 2 in her, she calmed down and was "resting comfortably". The nurse said her suggestion at the morning meeting would be to put her on a pump because we weren't going to be able to get oral meds in her. I must add we did not have a pill crusher or an oral syringe, nor were we told it would be useful to have one on hand. After the nurse left mom didn't last long before she stirred again, where we were advised to try to get some ativan and seroquel in her. My sister ended up wearing chocolate pudding and I honestly don't remember if we ever got meds in her. We also got zero sleep. This was 2 days without sleep for my sister. And I had maybe 3 hours the night before my flight. 

The next morning we assumed we would hear from a nurse once this meeting, where they would find out a pump was recommended, was finished. We waited but finally had to call. The nurse showed up, I would have to check our phone records to see when but it wasn't before 10 or 11. She tried getting meds in using a syringe and finally agreed a pump was going to be necessary and STAT ordered one to come from a company 90 minutes away. We were told it would be here by 2 or 3. Mom got restless when the percocet wore off (and mind you both nurses were blown away that that was all she was ordered). They added haldol to her meds for the agitation so we headed to pharmacy again. Even after haldol, ativan and percocet she was fighting us to get out of that bed. From midnight Wednesday until 7 pm Thursday we never had more than a couple hours tops, (more like 30  minutes) of not fighting her. At 5 we called to find out where this pump was, we were given a run around and David insisted he would find out what was going on and get back to us. Now I can't remember all the details because A) no sleep B) exhaustion fighting my mom C)the trauma of visuals I won't go into of my mom's nudity and D) fear that this wasn't going to end and we would need to put her in a home, which we promised her we wouldn't. But I know he claimed they couldn't get hold of the driver and he'd get back to us with more info, I do not recall him ever getting back to us. By now my niece has arrived, we tried to convince her not to come, we didn't know she was coming til she was nearly here. I don't know if you can imagine how traumatic it was for a 25 year old girl to see her grandmom spread legged and naked fighting her mom to stand up, telling her(my sister,not my niece) to eat shit (a woman who didn't like to curse). I will never forget the look on her face, I would have done anything for her to not see that. Somehow miraculously mom exhausted herself and was "resting comfortably" with just my aunt and I watching her. Everyone else went to take a break and get some food. (we had not even thought about food or drink for who knows how long). The nurse decided to come before the pump got there rather than wait for word from the driver and she arrived at 7:30 to see my mom sleeping. the driver finally arrived shortly after 8 and we were petrified to put the needle in her because this was literally the first time in 12 hours that she had slept more than 5 minutes, with the exception of one or two 30 minute breaks. Somehow she didn't wake up and we thought the worst was finally behind us. We were giddy from no sleep and being goofy as hell. One day I will blog about the cows lying in a circle story and my mooing at my dad. We knew we needed to take shifts in case this didn't last. One of us needed to bolus her every 15 minutes, that's what we were told. not as needed but every 15 no matter what. Again should have been a red flag...why not make her continuous dose higher so that wasn't necessary. Also why weren't we given liquid meds. I did inquire about this and asked if there wasn't a pharmacy locally that specialized in hospice meds and was told no. The new company reminded me...duh pharmacies can have drugs the next day plus her company can have them overnighted from their own pharmacy and that the local Walgreens did have hospice meds. The new nurse was mortified that my mom was expected to have percocet crushed she said it tastes horrible and it's no wonder she was spitting it out. This in and of itself would have been enough to haunt us forever but unfortunately we are only up to Thursday evening. The rest of that night was what we had imagined. Changing her sheet when she peed was the biggest trauma but didn't seem terrible after the previous night. It was very difficult to do and she didn't make it easy and would struggle against us rolling her, due to the pain we must be causing just touching her. Remember we are bolusing her with extra doses every 15 minutes round the clock and she's still in pain. Friday is a blur. None of us are sleeping more than 2 hours because the nurses have us convinced she doesn't have much longer. My mom is not able to talk to us at all. But we just want her to be confortable until she passes. That doesn't last long. A nurse comes out Friday night is there for hours trying to get her comfortable, I believe she makes a Dr. Kevorkian comment at this point but I am not positive. She gets her "resting comfortably" and leaves. The next day is more of the same, we keep getting advice to keep upping her haldol, they act like we shouldn't bother with the ativan, which is running low. But whenever we skip it the restlessness is worse, she is definitely still having pain and changing wet sheets causes incidents that are very disruptive and hard to get the pain managed again. The same nurse comes at some point and says she realizes maybe the subq needle is bent, that's it's really thin and she may have bent it with all of the struggling thus not getting enough med. Why she couldn't have come back out earlier before we had to call again...I don't know. She finally gets there..hours later and yes that was the problem she spends a little time with us and believes the problem is solved ..resting comfortably, she leaves. 

And now I am getting sleepy it's Thursday June 16th and mom is alternating between a snore and the death rattle at 7 pm. I guess she's not going anywhere yet. So I'll make this a 2 or 3 parter.....

You will understand the sarcasm behind the "resting comfortably" when we get to the story of David and the definition of resting comfortably.