Moment of Silence

I saved my "ExtraBucks" from CVS lately, and bought myself a scented candle last night when I picked up my 4 new scripts. That brings my total for the month of May at 9 scripts. I always *love* (sarcasm) spending time deciding if I need to buy electricity or medicine each month.


But. I splurged and bought a $3 candle.
And my room smells nice. Relaxing.
Reminds me of the candles Wash would buy for me/us. Reminds me of the small signs he cared.

As I was walking home from the pharmacy last night, I realized with some quick math that Wash and I had walked that same stretch at least 600 times together. Probably closer to 800.
I could see the changes, like small photographs being flipped together. Winter, summer, seasons changing. Building being torn down and built up. The first few hundred walks, and then a Ghost Rider bicycle on the corner appears on 10 May 2010.
There are flashing lights, sirens. We are escorted to the other side of the street, and decide to walk home instead of further down the street.

It is now cooler, almost "cold" for Arizona. We are walking, hand in hand as always, Wash to my right side. He is wearing his "GEEK" black knit hat. He is laughing at something. His beard is thick, and I can see all the colours in it. Reds, blondes, browns.

It is a spring night. I am holding his hand with my right, and a bag in my left carrying Ginger Beer for us. He is walking slower now, but still laughs. There is a slight breeze, carrying the spiced scents of the Thai restaurants towards us. He is excited about his upcoming Stand-Up show.

It is summer now, and hot. Blinding. No more shade. Even the birds are standing in a single file row in the 4" of shade cast from a light pole. Wash is at home, no longer able to walk with me.

The photos blur faster. Rewind. I am out of breath pushing him in his wheelchair. We are trying to get early to "Wicked", our last anniversary present. Wash is angry and yelling, I am stressed and tired. Everything feels uphill at that moment.

Backwards. It is late fall. I am tired from work and moving. Wash is tired from moving, work, and school. He stops me from my load of laundry and pulls me outside. It is November 2008. We are on our first walk through our new neighbourhood together. His hand holds my right one. He is pointing out the styles of the apartments, townhomes, brownstones around us. He is wearing his work/welding boot and walking with large steps. I have to remind him to slow down, I cannot walk as fast.

Time ceases to be linear in my mind. It is past and present at the same time. Blank spots for the future. Images imagined of what could-have-been, what should-have-been.

He throws his head back, his neck long and scruffy with red tinged hair. He laughs. He smiles.
He leans closer and kisses me. I am flush with warmth.



I am home. The street is dark. The trees and front flowerbed across the street are gone, along with the kind older woman who tended to them daily, and spoke often to me about plants and gardens. The lights in front of my complex are different, installed a few years ago. The tree in our front yard is missing the large branch that a storm blew into my neighbours' bedroom window three winters ago.
Everything is different, and the same.

But I am now walking alone. The feeling of Wash holding my hand fades.


I walk inside my home. No longer "ours". He is gone. His welding boots are still on the shoe bench by the front door.

I light the candle. The scent takes me back in time again. I eat, I take my pills. I try to sleep.
I snuff the candle, but the smell hangs in the air, light, and comforting.


I am awake now. It is dark, still nighttime. I am hearing shadows of voices. Male? Female? Faint, but untraceable. My house is empty save for the cats and me.
I go back to my dark bedroom and hug Hoban tight. It is faint, but he still smells of Wash. The stuffed bear hold many hugs, and a small stuffed heart kissed by my Love when we had the bear made.


For the first time in weeks, I sleep.
I sleep, and I am thankful I do not dream.


The room is silent now, save for the typing and fans. My candle is lit again.
Tears are falling while I write.

There is a sense of emptiness. The last exhalation before a gasp and holding.
There is Silence.

I am Alone.

There is only physical self. Gaius-Wash is silent today.

Android Sheep

Another bad night for me.
Adjusting to Widowhood is not easy. For every reason.

I am sad and missing my husband, my late husband, very much.

I will not be shamed about my choice to be more open and public with my grief.
It is far too stigmatized and misunderstood as is, despite almost all the human population feeling it at some point in their life, or several.

Did I laugh today? Yes.

Am I still sad to be going to bed alone tonight, without the person who should be there? Yes.

Grief is complicated, and unique to every person.
This is mine.

I went grocery shopping today.
I cleaned. Did dishes. Took care of laundry and my cats.
I also spent a half hour sobbing on my kitchen floor. Later on, more tears with a pillow.

There have been more functional days, and days where I've started to have more intense emotions, often overwhelming.

It is a mix every time I wake if I think I'm still dreaming, or if I recall right away that he is gone.

He is my husband. He was my late husband.
Such difference in emotion in those phrases, what information it conveys.

I see time like I never have before.

Complete the Circle

"Everyone goes through hardships. The challenge of being a person, with compassion, is to pass that help along to the next person who needs it."


Friends, you all have done so much for Wash and myself.
You've helped to keep us in the home he wanted to die in. You are helping me to stay here right now, where I can still feel Wash around me.
You've helped us pay for food, and medicine, and cool air in the 119F heat of summer.

You helped buy clothes for Wash when the cancer changed his body shape, more than once.

Right now, I am living off of your generosity. When Wash died, our small Disability stipend stopped, so it's literally your kindness that keeps me in this home now, helps me to get food, to visit the doctor and get meds to help me cope after Wash's passing.
You are helping me to have the funds to have the memorial for Wash he did want.

I am so thankful for all of you.
I have something else to ask my readers.

I'd like you to smile right now. Chances are most of you have your teeth when you do.
Think of your morning routine, think of waking up and brushing your teeth, brushing them before bed.
Think of every smile you've given before a photo was taken of you. Yes, even the ones where you may have had braces, or a gap, or something in your teeth.

Now, I'd like you to think about my friend Mary O who cannot do that.
Like Wash, she faced cancer. Unlike him she's still around to fight. But it has cost her greatly.
Mary is in her 30s and does not have teeth. She's gone through surgery, and radiation. She has fought.
Medical Care in the US is something I could, and have, written other blog posts about.
But right now, Mary needs some teeth.

So, my friends, I'm asking you to think tomorrow when you brush your teeth.
Think about your $3.00 tube of toothpaste Mary cannot use or buy.
Think about your $2.00 toothbrush she does not have the luxury of being able to use.

I'm asking you, if you can, go to the link. Read her story. Think about your own smile; could you put a value on it? Think about taking the $5.00 you might have spent on your next toothbrush or paste and donating it so Mary can get some teeth.

As always, thank you for helping me continue to learn to Hope for Humanity.

Open the Box

Wash is having a super bad day.

Needed a LOT of medication this morning.

Did not know where he was for a while, could not remember we were married. He knew/recalled who I was, but I looked "different" to him this morning, which confused him.

The house has changed a little and he was very upset/confused where all his things were today?

Also when he was flipping channels he saw the date and freaked out; it CAN'T be September already! No! It's... the month that comes after January! He knows!

I hate brain cancer.

I hate what it has taken from us both.

Frak Cancer kind of day

Every day when he wakes up it is a new challenge.

Lately he just forgets he has cancer, he is sick, he needs help.

He tries to do things, most of the time just making a bigger mess or destroying what he thinks he is "fixing".

He thinks he has a job. He can't remember what he does though.

He thinks he is starting school soon; he's not.

It takes 30-90 minutes for him to really notice and remember what is different, what is changed now.

To get him to agree to take his medications...

He feels horrible without them, but his brain doesn't always remember he is sick, or that he feels better with meds. It takes time for him to recall and that time is excruciating to wait for him to take his meds and feel better.

Mornings are pretty awful these days.

Updates

Short update, I'm hoping to be back to write this afternoon.

It's rained twice this week! Not enough though to save my garden; only some of my wild Basil is still alive. It's been too hot, too sunny since we lost a neighbour's shade tree, and with my broken feet I have not been able to get out to water it myself.

Sad.

I'm not sure if it's relate to the weather, but Wash's pain has been increasing almost every day now. It really started to get bad about two weeks ago and now it's every hour or two that he needs meds to keep him going.

When he's not in pain, he's able to enjoy reading his LEGO building books (thank you Mark and Dayna) or to build/play with his LEGO sets.

He's been watching some older series too, things he says he can't remember anymore. His short term memory is declining as well. He needs a lot more help with the little daily things, and many many more reminders.

I have to be patient with him, and I'm not always. I could be better.

My foot is still quite sore and bruised from falling again this week. Gorram cats. I don't think I broke anything new; there's no new swelling. I'm getting another x-ray in about two weeks, so unless it gets worse I'll just wait. I'm trying to keep off it as much as I can and DAS BOOT it up if I have to stand or move about.

We had another Eval or two and Wash has gotten to the point where we will have a daily Aide coming over now to help. As of this month (or, the next 2-4 weeks unless it needs to change) we'll have an aide here now daily for 3-4 hours. That will help with some of the daily house needs, at least one meal that someone else can prep for him, and give me some time every single day to rest myself, a novel concept.

Wash also gave the "It's not you, it's me" speech to the (awful) Medical Social Worker. Hopefully we can get a new one (been trying for months) but at the very very least the MSW is aware now that we need someone who can take or return our calls, doesn't take vacation days in the middle of the week or take holidays without telling the clients (us), listens to Wash etc. Tried to be clear that it was not a "you are at fault" situation, but more that the MSW is not meeting Wash's NEEDS, and we need someone who can.

I am hopeful at this point.

The MSW is also working on a grief counselor for Wash too. He really needs to talk to someone, he's so scared of the next phase to come.

Let's see. Our main school in the big tank of danios is down to 2 males. We had 6 one day and one died. I took the dead one out and the next day instead of 4 fish, there were only 2. I never recovered the other bodies. Cannibal fish or a smart wet-pawed Leto, methinks.

However, before the massive die off, I did recover some fry. We have 3 fry in the baby tank now slowly growing into big fish! Can't tell their colours yet, but they will develop as they grow.

My mum helped out a bunch this week and did errands for me, so we have groceries and mail and bills paid. Hurrah! (Step) Dad made Shepherd's pie for Tuesday Dinner night this week; the leftovers might make it to tomorrow even! It's so good it rarely makes it more than a few days before someone in this house eats the leftovers.

Wash and I continue to thank everyone who keeps sending in Lego sets. He plays and builds them. Speaking of thanks, I need to get to work on his birthday thank you notes. Obviously he cannot do them anymore, so it's just another task that falls to me.

I can't even recall what else I wanted to write about. I've been trying to get some of my own rest and recovery in, and doing a lot of watching him and trying to treat his pain. Some days/nights he refuses his medication; sometimes just a couple hours, sometimes longer. He just gets so agitated and then confused and his confusion blocks him from being able to take meds, or calm down.

Brain cancer is pretty fucking awful.

I'll have more later. We're both still here, still alive.

I'm No Gandalf

He's not 33 either.

But, Happy 28th Birthday Dearest Wash.

I love you.

I'm so glad you made it this far.

May every day feel like a birthday for you.

You have a Friend

Ignoring the pile of bedding and the apparent crappiness of this quality, Wash is LOVING the LEGO sets.

Please send more LEGOs he says.

.... he was *this close* to being an architect graduate. He HAS to build. LEGOs are safe. We're all happy.

Longer post to come later, it was a long night; Wash had his first ever nigh terror (with me).

Warmed Up

I'm not in the best of moods tonight.

More stress and drama for my poor Wash. He doesn't need more stress. He needs people to work together, or even pretend to for his sake.

I got to play with a kitten today (no, not a new one for us) which helped a little.

I'm just feeling like everything is unfair, happiness is not going to be obtainable for me, I'm grieving tonight.

I am tired and depressed.

Loops

Wash had a bad night on Mon.

He almost fell in the kitchen. He said his legs were weak and numb.

Almost 2 hour after that he had odd sensations and pain in his neck.

Hospice sent a nurse over at midnight for him. Very nice guy, B. who checked Wash out.

He gave him some liquid meds and about 30 mins later Wash was moving his legs comfortably.

He is increasing his Ativan and steroids- in case this is from brain pressure from a tumor(s).

Outside that, Wash will have a walker delivered tomorrow for use around home/walking. His balance is just not as safe as he used to be.

If I have the time or energy, I want to mod it like an Imperial Walker for him. A small geek token to the nerd I love.

It could also just be stress; Wash thinks it is. There is a lot of tension and drama going on right now- I won't go into detail at this specific time because Wash has asked it of me, so I will respect his wish as long as he wants or is alive.

Suffice it to say, there are some external stress factors not directly related to his cancer which *I* cannot really remove /make easier for him. I do my best to distract him, but he has to face this part alone.

He slept in until around 11am after finally going to sleep around 2-3am. Thankfully, I managed to fall asleep shortly after him.

He also napped from 3-nearly7pm today. His body has had a lot of strength taken away, and even emotionally draining issues have physical side effects for him.

My mother was kind enough to bring over taco mixings for us tonight, so we could still have Taco Tuesday, even though Wash is not up for leaving the house.

I appreciate every bit of support from my friends and family right now.

Every day is hard.

I feel like this is the start of the last tunnel, the last long stretch.

My job now is just to give him something to smile and live for each day.

Hastily Fortified

Wash had a REAL bad day yesterday and memory wise a shit week. He has moments where he knows who he is/the cancer et all, but most of it seems to be a 27 year old turning about 6.

He doesn't remember Sept 11th. He remembers something happened in NY/the towers are gone, but the event itself he cannot recall. [We're watching a mix of OLD Simpsons lately and some shows from the late 2000s [2006+]] He forgets names every day, even the Hospice folks he sees weekly now. He's not even writing anymore, he'll read a little, play with LEGOS and toys and rest/sleep. This, on top of his confusing Aelphie this week for his old (dead) cat, Max.

A lot of the time, it's hard for him to speak clearly, especially when he gets more excited.

I don't bring things up with him anymore when I notice this, just file it away. I think he doesn't notice, I have to hope he doesn't notice losing himself every single day.

I'm still hoping he'll be feeling well enough to see Brave this weekend. Maybe.

Watching him die hurts. I'm thankful he's mentally mostly gone though.

So, that's where I'm at.

I wake up every few hours to see if he's breathing. I don't aim to do it, but I'll just WAKE and have to check.

Posts at 1am

Wash has had Xanax and Ativan up the yazoo. He was ok for the two or so hours our friend J. was by tonight.
Then he got super angry and depressed again. He cannot remember so much of the short term stuff, and he was angry at himself- and yelled at me.
He asked for the Chaplain to come, it'll be close to 1am when she gets here. He says he's getting "Ready" and doesn't want to "pain me or talk about it with you".

I'm trying so hard to not cry right now.

I brought him some wood blocks and Legos to play with, because he was asking what was "safe" that he woudn't harm himself with.
The Hospice Nurse on call said she hoped it was a bad night, but that these intense changes, and his night-issues might be his way of trying to say he is ready to die.

Fuck.
NOW I'm crying.

Harbinger

Bad night.

I had to call Hospice twice.

He was uncontrollable. So angry at me, saying the most horrid things.

Then, he started to hit himself.

He's on Ativan and Haldol tonight.

He's a bit more calm now.

He keeps calling Aelphie "Max". "Max" was Wash's old cat when he was a younger kid, that cat has been passed away for many years now. He sometimes catches himself, "No, Aelphie, not Max!" but...

This is a shit awful and scary night for me.

I'll give more details later, it hurts to write right now.

Where do we go from here? Kumbayaya Remix

Friday was a long day. Lots of shit from Wash, and very very little sleep for me.

Then he woke me up every 2 hours.

I made some desperate calls and my mum agreed to watch Wash for the day so I could rest. He did not fully understand that, so for the first while was just angry at me that I was "abandoning" him again.

He came home after 8 hours away and right as soon as my mum left, began to be nasty to me again.

I had gotten one good nap in and a bunch of chores. Not in the best mood to deal with his crap, piling on me.

I called Hospice and let them know what was going on.

After about 2 hours of him being pissed and me doing laundry upstairs, he had some medical cannabis and calmed the frak right down and even apologized.

He went from, "I want to sleep on the couch and even if it's my last night alive I would not change anything!" to "I'm so sorry. Can we please cuddle?"

He's still asleep right now (2 extra hours for him) after passing out after 3am, myself after 4.

I'm expecting the Hospice Nursing team to be here before noon. We'll talk about medication changes and options for Wash to go away to a Hospice Palliative Home for a few days so I really can rest and get some things done around here.

I'm scared. I'm afraid to go another day with the person who wears the skin of the man I love; it's literally a stranger in my husband's body. I'm afraid to go a day without him. I'm scared of him dying away from home, away from me.

I'm scared if he leaves, will he remember me when he comes home? Will he remember home?

Brain cancer is g-dsdamn awful.

Locked in a bathroom

Wash's energy ran out before he could get his play-date/game this afternoon. He's refusing to listen to me, or take

his meds (properly). Also, apparently I am worth yelling at and giving nasty hand gestures to, because I informed

him he was not the only person with cancer, and other people might need me.

So, I'm the "bad guy" again.

Frakkin' brain cancer.

The Note

Family and Friends,

It's been a little bit since the last real update on Kevin past his entering into Home Hospice Care this January.

It's been a rough few months with many new challenges, but also quite a few wonderful moments, new memories for us both, and a wonderful outpouring of "geek" support for my beloved Browncoat.

Kevin is having a lot more issues right now, which is the nature and course of his disease. Before he went into Hospice service this year he had made it well known he was not interested in more chemotherapy when his brain tumor(s) came back; he wanted the best and happiest quality of life he could have for as long as he could have it. I have done my best to honour his wishes and with some wonderful support from around the world, I have been able to keep him at home and mostly comfortable. He does not consider this to be "giving up" or "not fighting"; he is working with his grief towards acceptance of the end course of his disease. Please know that the intent of this message is only to give you the opportunity to get some closure both for Kevin and for yourself. To give you the knowledge and awareness that despite our best efforts, an immense amount of prayers and well wishes, the love and support of our family and friends, and the best advances that medical science has to offer, he is not going to get "better".

We are losing Kevin, day by day, and the course is set and tragically unchangeable. I would have you know that, and have the choice about how you would like to handle saying your goodbyes. We also want to pass along that the window for saying your goodbyes is starting to close more quickly now so if you wish to visit or call or write, you should immediately start making those plans. Since stimulation has a direct line to his exhaustion and fatigue please take directly to me if you are out of State and would like a longer visit (over a period of a few days).

I am asking those who are local to try if you can to come for a day/evening visit or even a phone/Skype call. He is still able to enjoy things, and his personality still shines through on most days; but he is having more days where he does lose "himself". This is common with brain injuries/cancer. He may recall you and every detail from the last time you were together, but also be aware he may not really recognize you or how much time has passed between events. If he is not upset over this, or seems to be in a time period from when he was younger, that again is just part of his disease. For now we suggest day/evening visits be kept to 1 hour or less, unless details have been discussed with me prior. Some days he may like to go out for burgers, or to see a movie - and he has a wheelchair if he needs it on those days, and others he may just enjoy a short game or talk at home.

I will do my best to address any questions you might have.We both thank everyone for the continued kind thoughts, wishes, and prayers.

Tashi Pratt-King

Please visit www.savewash.com for more information on Kevin and Glioblastoma Multiforme brain cancer.

Ragute

Hard morning for us both.

Wash woke this morning a bit panicked. He was very confused with what day is it today, who is coming over, what day is it again?, No there's stuff to do!

He got very very angry at/with me when I tried to correct him/give him info on today.

I had to ask him to sit in his "Cool Down Chair" twice this am.

Heavier on the am Xanax too.

I hate the days he doesn't remember. He knows who he is, but the rest is scary details he only faintly remembers.

He knows someone from Hospice is coming over today, but it's not his normal CNA so even explaining that just confuses him more. Same with a new Hospice nurse this afternoon.

I need extra patience on days like these. He's mentally a scared 3-5 year old in the body of a sick 27 year old.

But I always have to be the adult.

It's scary, it's not fair, and it's not fun.

But which one sings?

It's been a busy few days for sure! Monday was one of the best days I've/We've had in weeks. Wash was VERY present. He was himself, he was nice and sweet and even though physically he was not up for much, I got a good cuddle in with him, some nice hand holding and really, just some good moments with my husband.

Then, most of him left again. He tried very hard this week to compensate, as his parents were in town for a couple days, but he was looking for brain and energy that did not exist. He needed some long naps, a lot more Xanax this week, and more patience than I had.

Caring for my 27 year old physically, but mentally .... not, husband is a lot like a grown human's body, the endurance of a newborn, emotions of a 4-6 year old, and the memory of a 20 some odd year old. It's a lot.

He gets mad at me when I have to explain something a few times, or phrase it differently so he understands. He is cogent enough to know he doesn't understand, but not enough to really grasp what he knows he has issues with.

I think it was hard for his parents to come and really SEE him this time. I'm glad they did, he is too, and happy he was able to be honest for the most part with them. I'm personally sad, I am not sure if he will have the relationship with his brother he wants, but on that; Wash's bro wants a (probably, I'm not Wash, so I can't say for certain) well deserved apology, but Wash is NEVER going to be able to do that. He doesn't remember they fought, let alone what over! Any apology is truly meaningless. But, I don't know if Wash realizes either that his brother has to work through things as well and "just because" he *is* dying, it does not mean that everyone he wants is going to be placing Wash as their top priority. As sad on either part as it might be.

But, Wash was able to say some things, his parents were as well, and my personal hope is that all parties have begun to move forward again towards acceptance.

All the rest is just drama that pisses me off, and I've had far too much of that this week.

Thank you to the several awesome folks who have sent us Girl Scout Cookies. Wash's steroids have been up for a few weeks now and he is MOST appreciative. I have a nice Thin Mint stockpile which should last me through the summer and winter. Since we're in AZ a wonderful treat I've loved for decades is freezing Thin Mints and having them out on the porch on hot summer nights when the sun goes down.

I've been hard working in my garden to make sure that option will be a nice one for Wash this year. My fruits and veg are doing great, with the exception of the melon which is not taking. Boo. However, lots of bean and peas, lots of carrots, tomatoes, my strawberries just starting to come in, so we have a few ripe once a week or so. I've got all my solar lights up, and at night the flowers look great and it usually smells like basil and wet rosemary now. My gardenia has also finally gotten over transplant shock from Dec and the first bloom opened this morning! I love the fresh smell, bringing the blooms inside.

Wash has lately begun to spend the mornings outside with me and while I water, weed, and garden he usually takes Leto out to play with grass and he has begun to "read" the daily newspaper. He asked me last week to start getting the paper; it's too hard for him to try and keep up online with the news now, too many distractions. So he kinda skims the paper daily, and if he seems something he wants to read or know more details about he asks me. I have noticed we do have some more things to talk about, but there is so much bad shit going on, Wash tends to get angry like me at certain news.

I try to check the news the night before so I know if I have to censor it. He's asked me to remove traces of a few things; some certain architecture things, anything to do with Taliesin/West, and Earthquake reports by his hometown in CA. Not a large list, but we've learned from hard lessons those things will trigger the shit out of him, and he gets very depressed or worse. It's a little more work for me, but it makes him happier.

Mornings have turned for us as well, he needs to go VERY slow, and usually needs some other help to tide him over for the hour or so he is awake before his pills kick in. I have to have extra patience during this time. He's not fully awake, aware, conscious. But, he tries to be. There's a lot more work for me every morning. I want to try though. I have to try.

His Hospice check-outs were pretty good this week. He is having some medication side effects now, he does have the standard "Chipmunk" steroid face. A few people had mentioned to me he was looking swollen, but I thought it was just his winter beard left over (see pic from Sunday). However, he shaved down Mon and Wed and as the photo above shows, it's not beard, he just has more swelling. He is slow GI wise, but still normal, though he is physically changing; his legs are getting skinnier and his muscle is wasting a bit. His belly and chest are getting more barrel shaped though; meds and just the inevitable path of cancer. He's still not eating like he was last year, but he is eating a little bit more on a daily basis. It's hard for him. He forgets he is hungry easily, and he won't eat unless he is being helped and reminded. He can feed himself, but he won't remember to eat on his own. That's hard to watch.

I will put this out; if anyone wants to contact me to help me get him a properly fitting UtiliKilt I would be beyond grateful. He loved his UtiliKilt from the day he got it, the day he was married in it, even some of his early chemo sessions he went in it. But, starting around last summer, he lost too much weight and could not wear it, then gained it back/ had it go to his belly. His old one does not fit anymore. It's what he wants to wear when he has a Living Wake. Should I try and see if the company can alter it for him? Get a new one at this point? Any advice or help I would love.

Also, in the photos above you may notice a new kitty; the kind, awesome, cool, inspiring, (positive adjective) folks at www.thinkgeek.com sent Wash a singing "Soft Kitty". We (ok, me.) named her Zazzles. We are in agreement she's a girl. Wash calls her his "Soft Kitty" though. Leto is just in LOVE. He keeps snuggling up to her where ever we place her on the bed. She's about Aelphie-sized, but unlike big sis Aelphie, Zazzles just sings. Does not hiss or try to fight Leto. He even fell asleep on her last night.

We're both pretty darn happy, and I am very thankful for the kindness; I smile when I see him cuddling his new plush and happy. So again, thank you.

I know there's more to catch up and talk about, but Wash needs me to cut a bagel for him.

Thank you, Dear Readers. Always.

Acute

The pain in my heart is intense. It is overwhelming. Tears keep smearing on my glasses, but I can't write without seeing. Too many typos.

I did something last night I regret. I don't often have regrets, really never, so this hurts like a new kind of pain I'm discovering. I feel used. I feel like I have not in years and years. Dirty. Bad. Selfish.

I allowed myself too much hope last night. Too many thoughts and ideas of what Once Was, not what Is.

He can't even keep his days right anymore. The first thing he asks me when he wakes up now is no longer "I love you. I'm happy to wake up next to you" sort, now it is, "What is today, Tashi? What do I have to do? Am I seeing a nurse or doctor today?"

Physically he has sometimes 2-4 hours in a day where he is or can be active. Usually about 2 hours at a time. He sleeps a lot, and watches a LOT of movies/streaming stuff. With his memory issues he's finding it harder to watch TV with commercials, by the time the show is back on he's forgotten what's happened. Watching on DVD or streaming helps with that, he can keep his focus better and enjoy watching.

I try to read to him when I can. He asked me the other day to start getting the daily paper; getting news from blogs and sites is too confusing, so he wants to just look at the paper. He has not kept up with the news in years, I fill him in on the topics of the Daily Show and other things, but emotionally he can't distance himself; it's why I stopped reading him news years ago about the Affordable Care Act, or other AZ laws that have been enacted in the past few years which literally can kill him.

It hurts. I had a moment yesterday to stop that hurt. I took it. I regret it.

I feel like I've cheated on my husband and the man I swore to love to his death, with I'm not even sure. Who ever is wearing my husband as an Edgar suit right now.

I wonder if there's another tumor hiding in there? Eating up my husband, my love, and leaving this poor shell that doesn't even know he is being hollowed out.

He lives Groundhog day every single day, and only barely knows it. It hurts to watch how far he has come down. It hurts to see him give up the things that made him happy because they are just too dangerous or he can't be trusted to properly supervise himself. He's in an Adult body, but he cannot take care of himself. In any real way, he can't.

I know he has Hospice folks in almost every day to check on us. I worry they don't see what I do. They are not here 24/7 and don't always see him fall apart- lately he's been letting help in so they can. I worry since Wash is able to project himself into some level of "normalcy" for sometimes an hour at a time, people don't believe me. They don't see how much he's lost of himself.

Then again, I can't keep my own house clean anymore- not and watch him- I am falling to pieces, and I wonder if they can see that he cannot help. He wants to, he does! But saying you are going to do something for 5 days in a row, staring at it, but not doing a thing.... this is what he does. He cannot be honest with himself or with me. That hurts so much.

I could make provisions, I could make plans, I could ask for more regular help if he would be honest- first to himself and to me. But he cannot. He cannot see that what he says he never does, he has no follow through. That's the cancer. I don't know if it is cancer or Wash though, that does not want to face the truth, or even hear it from me.

It's a sharp Guillotine above my head. He was once an adult who had a complete brain. He was a genius. Now he cannot remember what day it is. He's 27. I infantalize him for safety, win/lose. I treat him as an adult and spend all my time fixing, repairing what he's messed or broken win/lose.

Either way, it is painful for me, and then I still have a blade rushing towards my own head.

Too many tears.

Sighs

I let him sleep in for more than an hour today.

Did not help. He woke up physically rested and feeling "strong", but mentally he is off today. He has control issues and keeps showing some obsessive behaviours. He's picking at parts of his face and back and is getting to be a bit bloody. I'm going to speak to his nurses, I can't make him wear gloves every hour. I'm also watching him a lot closer, which takes away any real chance of "free" time for me, I'm stuck being close enough to him to make sure he doesn't dig a hole in his body.

I know it is not him, not my love. This is a side effect of his meds, or scar tissue, or something else. I can still hate it though.

He's so negative and nasty. He thinks he is being funny or clever, but he is just being a horrid human. The things he says... sometimes he is aware of them when I point it out, other times he literally does not remember the words that just came from his mouth. He will attack the people on tv, that is one of his more common ways to express. Gender, sex, race, all these things that I know he has never had an issue with in his life, but he sounds like some horrid extreme opposite of who he was. It always takes me by shock. He's better about not saying things out loud with a few people around us, but I see it come out when he is out in crowds. It's amazing in a horrid way how physically damaging the brain can change people in such complete and fundamental ways.

I always wait for it to pass, and for the most part after a few hours or a good sleep, it will. *My* Wash will come back, along with his sensibilities and his true kindness. Brain injuries and cancer can be so devastating and challenging.

One of the downsides is when he gets in these kinds of moods I get so tired from having to be so patient when he says things that make my head want to burst. I have to be patient and kind, and unlike being polite to a debate opponent I can't just tear apart in front of him WHY it is inappropriate/not kind to say those things. I have to see if he even knows or remembers or is aware he made the statement, tell him, wait for him to calm down, and go over why it is not "ok" to say out loud, or why he may get weird looks if he says it out loud and out side.

I love him, I hate the parts that have been stolen away by cancer and surgeries and a big fucking tumor.

Meanwhile I wait for an apology 8 days overdue. [Not Wash] People I deeply love seem to hurt me the most when I'm let down.

More later, pill time again.