Friday, January 31, 2014

The Post I Didn't Want To Make

Somewhere inside me I never thought I'd have to write this post.
David passed away Wednesday morning, January 29th, 2014.

I know people often say that someone's passing was peaceful but I'm not sure I ever fully appreciated what that might mean until now.

At 8:54 am I started to give him his next dose of pain meds (due at 9) and I noticed his breathing was a little more uneven than before. Still quiet but definitely uneven. I felt like this was different than the other times his breathing pattern changed and I cuddled up close and held him as he took his final few breaths. I found it somehow fitting that the only lights I had bothered to turn on that morning were the Christmas lights we still have hanging in our room because he asked me to leave them up.  They were perfect if there is such a thing. Truly.

He took his last breath at 9:01 and I feel so blessed to have been able to be with him.  He said all along that he hoped I would be sleeping or taking a shower or out of the house or something when he passed because he didn't want me to have to live with that memory but it will always be one of my most precious memories. Bittersweet to be certain but what a blessing to feel his pain drift away. To not have to see my love suffer any longer with the hardships the last two years have brought him, both emotional and physical, and know that he's whole again. He has a wanderlust that's been stifled by circumstance and I was genuinely excited for him to get to travel to someplace he has, in essence, been waiting to go his whole life.

Rose and I got Owen from school and he and I had a nice family moment with Dave before they came to pick him up. We don't feel we left anything unsaid. That was part of the blessing of having so long to grieve.

We spent the day surrounded by friends and family, crying, laughing, hiding in our rooms or playing video games if that's what we needed to do (esp if your name is owen... heh) I told him it's ok if he needs space, he can hide from anyone but me and so far he's not even attempting to hide from me. I don't know how I got so lucky.  Tim said that Owen is growing into the same type of gentle, spazzy man that his father was. I can't think of a more perfect description.

I feel that every post of this blog for the last 2 years has been a love letter of sorts to David. He read every post up until my last one and I read that one to him. It breaks my heart to lose my best friend but it also broke my heart to watch him suffer. Today, the 31st, is my birthday. I could sit around feeling sorry for myself, and I might do a tiny bit of that, but would rather consider this a gift. To me and to Dave, really. I'm relieved. Ya, I said the secret thing people don't want to talk about. There is relief mixed in with all the pain. There's some survivors guilt for sure but mostly I'm relieved to the point of tears that he isn't in pain every day. I kind of don't know what to do with myself because the majority of my energy revolved around taking care of him. I'll figure it out. We will honor him by finding a new normal.

There will be a service for David at the LDS chapel at 550 North Danebo in Eugene on Tuesday Feb 4th at 2:00 pm.  All are welcome. I made a choice to spend my birthday with my son instead of looking to see what the obituary deadline was and it looks as though the Obit may not run until after the service. Oops... I feel pretty terrible about it actually but since there's nothing I can do about it I'll just suck it up and spread the word in other ways.  I can only do so much and I suspect he would have wanted me to spend the day with my most favorite person in the world anyway instead of doing unfun stuff so maybe in that way I also honor him. Ya, I'm gonna go with that.

Tuesday, January 28, 2014

Thanks For The Pie.

Things are little by little getting quieter around here. Last night at bedtime I asked Dave if he thought he could swallow a couple of pills. I planned to only offer the morphine and the diuretic as they are tiny and I felt they were the more important of the lot. He looked at them and nodded yes. Morphine first. He took a sip of water and I gave him the pill. He drank a bit more then after a moment he made his snarl face which is not unlike his Billy Idol face that he confesses as a teen he practiced in the mirror because Billy Idol was pretty cool. "You didnt swallow it, did you?" *shakes head* "Let me see" *opens his mouth* and there it was. I pulled it back out and let him know that's ok and thats why we have the liquid meds so we'll just use those instead. The nurse prepped me for such an instance so I had the dosage all worked out and written down. I spent a few minutes setting alarms on my phone and away we went on the every 3 or 4 hour schedule. Every 3 hours at night to help him sleep and 4 during the day unless it seems like he needs more. I rested a lot but didnt really sleep. I liken it to a new parent's schedule. Every couple of hours you attend to some need, it's exhausting but it's a labor of love. It makes sense really that we would ideally give someone at the end of their life the same love and attention that you'd give someone at the beginning of their life.

 I fully believe that David is still aware of whats going on and he hears and understands what we say to him, or around him. The last couple of days he's done a lot of mumbling in his wakeful moments. Last night his sister and family came to visit, I'm pretty sure he told his sister, "Thanks for the pie" as she was preparing to leave. I know he was saying thank you for coming to say goodbye, and he did say that, it just took a second to get the words to come out right. I'd like to think he was also thanking them for the dozens of Thanksgiving pies we've shared with them over the years. The man likes pie.

This morning (Monday) as Owen left for school David woke and told him bye and he loves him. Thats pretty much the last coherent thing he's said. It's obvious that he hears us and sometimes reacts but doesn't talk much. It takes too much energy. When Owen said goodnight and gave Dave a hug Owen got a kiss on the cheek. That boy means the world to Dave and he continues to show it even when he can't say it out loud.

The missionaries came to visit the other day and offered Dave and I both blessings. He kept saying "bless you too" to me, to make sure I was also taken care of. Like always.

I told Owen Sunday night that I didn't know what would happen this week but we just have to power through. He has finals so I carefully worded permission for him to not have to stress about his grades for half a second. Just do your best and it doesn't matter what the grade ends up being. All we can do is our best. He looked skeptical and wanted to know if I would feel the same way once I see his grades. Hahaha maybe he wants it in writing. For now I'm trying to keep his schedule as normal as possible but it's an abnormal week both at home and at school. I suppose that's fitting. We'll see what the rest of the week brings.

Every day we've seen a small but specific decline in David and I expect that to continue. We're being well looked after by hospice and he seems very comfortable and at peace. I know he's ready to go and while we'll never be ready to let him go I think we're as ready as we can be.  I'll update more when my scattered brain can put together thoughts. Thank you for all the messages of love and for keeping us all in your thoughts and prayers. We take it all to heart.

Saturday, January 25, 2014

Chutes and Ladders

Hi All, 
There's not really a nice way to say this so I'm not even going to try. David's chutes and ladders game hit a big old chute this week. Ok, maybe I'll try a little. ;)  Last time I posted I mentioned that he wasn't eating much and was a little swollen and under the weather.  On the bright side his sniffles seem to be gone, maybe because the fog has lifted (outside anyway) and the sun is shining. Everything else has gotten worse.  The edema hasn't reduced, he has a hard time waking up and Thursday afternoon he started refusing food entirely. There's a part of me that kind of waited to see if he'd turn around, like he has a few times before, but this time it's definitely different.

At this point he's pretty much sleeping and I'm giving him pain meds as needed to keep him as comfortable as possible. He wakes up on occasion and mumbles a few things then falls back to sleep. He's confused sometimes and mumbles so you can't really understand what he's saying except occasionally he blurts out something obvious. Except when we tell him we love him, he always responds in kind. It's the only thing he responds to without fail. Earlier I was sitting near him, playing with his phone (he gets a lot of text alerts for things, he's funny)  and he woke up, looked up and said "You're a nice girl" then fell back to sleep. I don't know how I got so lucky that even now he's still as sweet as can be and has rarely been anything but. Last night he had a silly moment with Owen as Owen was saying goodnight. It's those things we'll remember most.

I told Owen that things weren't looking good on thursday and he replied, "Worst birthday present ever"  Seriously. My birthday is next friday, Owen's is Feb 17th and Dave's is March 3rd.  I told him it sucks for us but I think it's exactly what Dave wants for his birthday.

I asked the nurse what we were looking at for a time frame here. She got out the reference book they give you when you first get admitted to hospice and there are a few lists of things to look for and what it means as far as how far from death someone is. Handy list to have I suppose. We're seeing most of the things in the 1-3 weeks range but maybe little touches of things in the 1-2 days range.  Her best guess was about a week.

Owen has finals next week. What's your first finals in high school without a little bit of extra stress? My heart breaks for what he has to endure. He's amazing, truly. I keep forgetting to notify his principal or counselor or teachers of the change. Mom fail. I'll take care of it before monday, I've just been in a bit of a fog. I guess the fog moved from outside to in my brain.

I told Owen I'm a little scattered and stressed but that I'm trying to make sure everything he needs is taken care of and he smiled his "duh, mom" smile. I said, "not like you can't tell when I'm stressed."  He said something like "it would be more unique for you to be not stressed." And we both laughed. Laughing is good. My sis-in-law, Ricki, said "Can you imagine a life without stress? Being able to relax?" I told her I'm not even sure what those words mean right now. I know those days are coming and I don't know when that will be able to happen but right now it's enough to know that some time in the future things will be easier. I keep telling myself so I remember.

One blessing in all of this is that we've had 2 years to say all the things we want to say. Nothing is left unspoken so even though this caught us a little bit off guard with how rapidly he declined I guess in a way we're as prepared as we could hope to be.

Monday, January 20, 2014

It's 2014? When Did That Happen?

Hi All,

It seems we pretty much lost all of 2013. I keep thinking 2012 just happened and it can't possibly be 2014, yet here it is. Things are pretty quiet around here and we're trying to keep it that way. David hasn't been feeling great lately but we're not yet sure if it's advancement of the tumor or just an anomaly.

Christmas and New Years came and went without too much foofarah. Dave got up in the chair a couple times and all seemed mostly ok but afterwards his legs started swelling. A few days later one of them sprung a leak. It's called weeping edema and it's fairly common so there was no real panic, it's just something we have to keep an eye on.  That stopped after a few days and the swelling went down then unexpectedly and without obvious provocation the swelling came back.  It's in his whole body. The steroids he's been on for months could be making that worse so over the last couple of weeks we've done some adjusting of meds. Getting off the steroids, increasing the diuretic, increasing the morphine to help with the decreased steroid. etc etc..  He's had a few really bad migraines and now has a bit of a sniffle and an occasional cough.  We're not sure if he's sick or if it's the terrible weather inversions we've been having in the valley.  He thinks he may have a touch of a cold.  I hope not seeing as it was this same time last year that he and Owen got really sick and they were worried about Dave getting pneumonia.  We don't need a repeat of that.

Basically the hospice team feels that if the change in meds doesn't decrease his edema (fluid retention) they will consider it a progression of the disease. We can't really say that we would consider it anything else at this point.  He's been constantly tired and his appetite has gotten much smaller (probably thanks to not being on the steroid anymore) and we're just trying to keep him as comfortable as possible.

I don't mean to only post when things seem to be changing but it's kind of all I have energy for these days. That sounds really bad, I don't mean it to sound all Debbie Downer. I'm not.  I'm just focused on the things I need to take care of and not much else of anything.

Thankfully we got the insurance stuff all sorted out for the time being, hospice sorted out until he goes on medicare, our taxes are almost done (because I don't want them lingering over me), the housekeepers came in and did a deep clean of things (thanks to some awesome friends and me not using a gift cert until a year later and the owner of the company being nice and honoring it. Oops)   and Owen is being a giant help, as usual.  Even in those little teenagery moments he's still helpful... he just sighs about having to be that way. I really couldn't ask for more. 

Hope everyone had a happy new year and I'll update when/if we find out more!