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.

Songs from an American Story

I wake up Wash this morning "Outside!"
"Wash, you can't go outside, it's hot and wet right now. You need to take your pills first."
"No! No wanna go out! The... the... stuff, the outside stuff; our FURNITURE! Is it gone?"
"What? Why would it be gone?"
"It's a YES OR NO ANSWER TASHI, IS OUR BACKYARD STUFF GONE?"
"I don't understand why you think it would be gone...."
"THE STORM. THE STORM TAKES STUFF. DUH, TASHI."
He goes and looks out the window.
"SEE??? You could have just said, 'No'." [everything is EXACTLY where it should be outside]

I just... what?

Waiting for his meds to kick in and the Hospice nurse to arrive.
How's everyone else's morning NOT dealing with brain cancer?

For reference, nothing has EVER gone missing during a storm for us. The umbrella gets knocked over, but nothing

goes MISSING. And I took down the umbrella earlier.

I'm wondering if he thinks it is Summer 2011 when we had our things STOLEN from the backyard?

Parental Advisory

Nod to my friend L. for this, but, if you are *my* parents or Wash's - you might want to skip over this specific entry.

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I did warn you....

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His brain is getting worse. Either the damage and necrosis from the radiation is spreading or he has a new tumor that is growing.

His pain is worse every day. He's on painkillers so strong they come in an eyedropper bottle with huge red WARNING signs all over it.

He sleeps at least 12 hours per day now. Some of that might be meds, or it might be his fatigue from brain surgery. It might change, go back down so he is awake more, or it might be that sleep is the big time when he is not in pain now, so he does it more.

He lies a lot now (he compulsively lied when he had the first tumor), to me, to his nurses and aides. I don't think he is doing anything "on purpose", but the brain is a weird organ.

He tries to use words, sometimes "big words" and he is not speaking correctly anymore. He can put together a sentence, but it takes concentration and effort to figure out what he means. Sometimes I have to ask him a few times to clarify.

I spoke to his nurse/Hospice team leader today about getting some daily CNA help with his personal hygiene. He cannot remember how to brush his teeth anymore. It used to be with a lot of post-it notes he could eventually remember, but I discovered for at least 5 days he was not brushing his teeth, or brushing them with no toothpaste because he moved it from his bathroom to a kitchen drawer. (Yeah, lots of things like that!) He doesn't like me to watch him brush his teeth, wash his face, (his morning routine) because he says he feels like a child.

But, he kind of is.

So, I'm hoping Hospice or the insurance company will pay to have someone come out and help him with that stuff. He has a CNA help him shower 3 times a week already, so it would just be expanding those "personal hygiene" needs.

I can't really talk about this with him even; there are so many hours out of the day where he just cannot talk/listen/engage on an "adult" level. He doesn't understand actions --->consequences (bad or good). He knows things *happen*, but he just cannot always understand the WHY.

He does not say "I love you" to me anymore unless I say it first; then it is a reflex for him.

He does not kiss me anymore.

I rarely get hugs. Maybe a couple times a week now.

We are growing more distant as his memories start to fade.

I know he still knows who I am, but I know on some days he is confused about WHEN we are in time/space. He thinks it is 2008 or so.

It's harder to sleep in the same bed.

We both used to sleep nude. We're married, it's Arizona and HOT. He's started to wear clothes to bed to help with his temperature issues, and I've started too. It's odd, but I feel less comfortable being nude in my own home, in front of him.

I wonder if I'll be sleeping in the office on the spare blow up bed by the week's end?

I cried a lot last night, when I was alone downstairs with the kitties.

It's so hard to watch this part. It hurts me to see him in a place (mentally and physically) where he expressly did NOT want to be. He said many times he wanted to be dead rather than "living" like this.

It's hard to see him in pain.

It's hard to deal with my own pain, all encompassing.

I try to do as much as I can, as best as I can. It's not easy. I just have to respect his wishes and his wants that he made well known.

I should try to nap today while I have an aide here for a couple hours.

Lately though, my sleep is plagued by bad dreams.

I got 3 hours of sleep last night. Fucking brain cancer.

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.

Hey, Jude

I ended up calling and talking to a Hospice Nurse (on call) for a while around midnight/1am.

He's been in a fairly ok mood lately, but severe short term memory loss. Things happen and his brain just fills it in however he can. He's almost incapable of asking for help now.

He's been eating less and less for the past couple of days. Seems about 3 snack sized "meals". He likes to eat breakfast still; but I honestly wonder if that is not because it is ingrained into his routine; "I have to take pills, I have to wash my face, I have to eat" type of stuff.

I have a lot of good tasty stuff he still can/likes to eat around here. There are healthy things too, but, with what is going on and the Nurse's advice, I'm no longer pushing or reminding him to eat.

It's his body. He is just taking less and less more in.

He spends a lot of time with LEGO sets now, movies, and he's trying very hard to finish a Cherie Priest book. I don't push him or remind him about naps anymore (he had one before TDKR, but I wanted to make sure he'd be awake for the whole movie) and I need to extend that to his food too.

He hasn't been "out" for a walk (longer than front door to mailbox) in a few weeks. He's not strictly bedbound yet, he can still move around some, but he says there is less each day to wake and fight for.

August 6th is his birthday. I know he wants to live long enough to see 28 years.

This part is so hard. Letting go.

I've spent 34/35 some odd months working to keep him alive and happy, and now, my focus has to just be his happiness at the end.

Hospice P. is coming over this afternoon, I've asked him to help Wash dis-assemble his large 4" (diam) telescope so we have more room downstairs for him. After that they can work on Helms Deep for LOTR LEGO.

Thank you to everyone who has been sending us postcards, LEGOs for Wash, and kind thoughts and prayers. Thank you to the few people who have been in shoes very much like mine who have reached out. My heart aches you know this pain as well, but I see the kindness in reaching out to remind me I'm not alone. Thank you.

We got rain yesterday. The kitties were happy. Aelphie has been like superglue next to me over the last few days, and Leto too has been making sure he's not more than a metre away from Wash at any one time. I think they know something is off. Lots more cuddles and more cat hair on everything. Worth it.

I spent three days fixing my filter pump in the big fish tank, then those 3 days spent cleaning out the tank over and over from all the algae growth, the dead fish (2 died. I have not told Wash and he has not noticed.) and the gunk that built up from the pump not working.

Thankfully for now I did not have to buy a new pump, only disassemble it and clean it.

However, sadly, I did have to get a new light-block after ours locked into the "on" setting and would not stop flickering. So, clean tank and new lights for the fish. I keep the decorations for the tank on a rotation so when they get dirty, I have clean ones ready to go and can dry/clean the rest in our hot direct sun.

I also cleaned out the baby tank and transferred over the 3 living fry from the baby "pot" to the fry tank. 2 of them were up and swimming, the 3rd not so much. With fry though, they can be tricky, so I won't think it's dead until I observe it not moving for a full day or being eaten.

Fish-keeping helps my mind sometimes. I'm not getting more, just replacing the few that died, so my school doesn't shrink and die off even more.

Hour by hour, I'm trying.

I'm hoping he will be feeling well enough this week to Skype with some friends and cousins. He's wanted to for a while, but gets too tired before I get the chance to set it up.

Balance

I've had a few more aides around the past couple days to help keep my off my foot and help with Wash.

I've been resting a lot and trying to think about the "next step" with all of this, our lives.

I never heard back from (awful) MSW last week. Or even Monday.

He wants to meet today.

I have to try and be calm, but my inclination is to yell him the fuck out at not responding to my page for him Wed, the 2-3 calls I left Thurs, the 2 voicemails I left Friday as well....

I am not happy with that area of Hospice. Everything else they are awesome. But our most recent Medical Social Worker is just.... patriarchal.

Neither Wash nor I are happy/get along with this guy.

I also spent most of yesterday while I was in bed working to sniff out a (brain cancer) faker. No, I will not link to anything right now, I'd rather not give the person more attention, which is their goal.

The anger I felt though, that someone would fake something so horrible that has personally effected me- it was more than eclipsed when the person was exposed at the very very very least as a lair about brain cancer. That let to a new kind of "vindication" happiness.

Wash has been building LEGO sets. For like, a week straight.

He shows no signs of slowing down or stopping. There really is not much he can "do" anymore, and LEGO lets him build, and pretend, and be an architect again, explore his Steampunk side, and he can happily regress to top! They're pretty perfect for him.

We had a few guests come by, it was nice to catch up with my friends.

I am saddened that everyone else seems to "grow up"; they graduate, they get engaged or married, they get pregnant, they buy a house, they have their first child, move for a new career, GROW.

They have the oppertunities for everything I *can't* have.

I am 25 still.

I didn't graduate, I don't know now if I ever will. Wash and I tried, but 3 miscarriages was the closest I ever came to that "life step". We have so much debt, I don't even dream of owning a house or property in the future.

My life is caring for my husband until he dies.

Then... what?

That's the part I can't see.

I can't imagine a future with *me* in it either.

Lost Tashi today.

/Good news, down to Advil only for the toe pain. Which is ok as long as I'm not standing or walking for more than 30 mins. 2-3 more weeks with a cane though.

Both reached for the

I have a hairline fracture on my left foot; right along the line where I have broken the toe before.

I think if I had not broken it in the past, it might have just been a bad sprain.

So, I'm supposed to stay off the foot as much as I can, no taping it- still too swollen, but ice and elevation.

3 weeks of a cane or crutches and it should be fully healed 6-8 weeks.

Thank you to everyone who is sending us love, postcards, and (for Wash) LEGO sets. He LOVES them. (Thank you!!)

He's playing with them now, much calmer and happier.

Last night was something truly terrible. This week has been a challenge for him. From the cat incident, to the falls. He just got SO ANGRY that the people around him can't "cure" him. That he won't get better. This is in his brain.

Seemed to just hit him all at once, and he just overloaded with anger and sadness and depression.

He would not take his medicine. He would not calm down, he was restless.

Said I needed to keep the cats upstairs because he did not trust himself around them or me.

We slept apart. It doesn't happen often in our marriage.

Hospice said I had to try to respect his wishes as a patient, because he was so clear and mentally present at the time, to be alone. To let him be downstairs without me watching him. He has a right to not be "safe". It's a hard thing for me to get used to, but they are right.

It was not easy to sleep without him by, wondering and worrying.

He was better in the morning. He wrote some last night, and also yelled for about 2 hours while he was downstairs. I have no idea if he was conscious he was speaking aloud, let alone yelling.

I got my X-rays this morning, he had S. as his aide/caregiver. Also gave me a chance to get by the post office to pick up some nice Star Wars LEGO sets that were sent to him. He will offer up to the nurses, "I know I'm regressing, but it makes me happy, and they're just so FUN." At this time I'm not worried about him choking on a piece, so I don't mind a million pieces around the house because he enjoys being able to still create and control in his little LEGO-land.

He needs that, and I'm glad I have the help to give it to him.

I do have a script for painkillers for the next little while that my foot feels frakkin' awful. I apologize if this later makes no linear sense.

We're going to watch "Treasure Planet" tonight, Wash has actually asked me. Like he's taking me on a "home date". I'm going to do my best to stuff down my emotions and show him I'm enjoying it, even if I'm in pain. He doesn't really understand anymore that other people hurt and feel physically and emotionally. It's all about him, all the time. That's ok. That's brain cancer.

But, he won't understand and doesn't understand when I tell him "No, that hurts me."

So, I have to smile tonight for him, because he needs some love and a memory of a smiling wife.

Rise above the pain to give him that.

It rained last night. I had a hibiscus blooming this morning. I hope it helps the tomatoes and the watermelon plant. It will be a little bit before I can water my own garden again.

Margins

My mum came over for about 30 mins this morning to watch Wash while I got to take a shower.

So far, that's the best part of my day.

I discovered when he used the bathroom last, he locked Aelphie in it- and the one with no food/water/litter box. So, the new $10/each rugs I had to buy to replace the ones Wash accidently covered with his human pee and poop, one was now covered in CAT pee and poop.

I'm attempting to clean it, hopefully it will, before I just throw away another rug. [I gotta have something in there so he doesn't slip!]

While I was doing that, I heard a large THUD and a metal clanging, so I ran upstairs;

Wash was crying and apologizing, saying all the lights in our bedroom did not work, so he wanted to check the breaker box, but when he opened it he couldn't remember what he was doing! And, thus, the tears.

I had him sit downstairs and I took a look- no power outage, he just did not flip the light switch/panel "on". He forgot how to turn lights on from a switch.

That's the kinda day I'm looking at. I have P. the caregiver coming this afternoon- my mum has said she's going to take me to a movie, let my head clear a little bit.

So. Day by day.

64 minutes

That's how much time I have right now to process everything, cry, think, deal, cope- before Wash wakes up from his nap and needs me to help him move.

Wash did not have a good start to his day. He fell a few times (thankfully onto the bed) when he first woke because he forgot he has trouble standing/walking now.

He was angry. He was confused.

He was a stranger needing help and ready to fight if anyone tried to give him (help).

I called the Hospice nurses and got him some meds to help him calm down. The Nurses wanted to send one out to check on him, and our (awful, new) Social Worker as well.

My mum came in the late morning to help me watch him. By then, he had mostly calmed down and was back to playing LEGOS. That seems to be one of the only things these days he enjoys, building his little LEGO worlds. [a friend sent some Star Wars LEGO sets last week he's been working on]

We had P. our afternoon aide come at one and the nurse was here at 2:30. The (awful) social worker was late.

We spoke like we did literally yesterday about his falls, about his short term memory issues, about my concerns for safety, and his concerns for lack of control....

The talks did not really resolve anything, but I have a lot on my plate to think about and figure out.

Bottom line, he's not safe upstairs anymore. So, I need to figure out how much space I need to make, find a mini-storage place, pack/move/box things up, get them moved, get the downstairs "safe" from sharp corners or things he could pull down if he fell, and figure out if I will be sleeping with him in a bed downstairs- if so WHERE- or do we need to keep space for the couch AND a little standard single bed? How much can I move before his brain freaks out at the changes? How much can I move before MY brain just cries and breaks down at the changes? The Aspie part of me has been (in my brain) hiding and crying in a closet for two days now. That part of me is unquestionably despondent at change.

Then, this all has to happen when Wash is somewhere safe; so do we try and get respite care hospice stay for him again, or does he present more of an "acute" need and thus can go right in to a hospice home for a while so they can get his morning stable and figure out how to best help him move around without posing a risk to break bones?

I won't even hear back about the possibility of a respite stay until Monday.

I feel like I have no time. Like this is all happening now far far too fast. Even beyond my control, my ability to keep safe.

I can't cry in front of him. I can't mourn. And I cannot get my head to actually make a godsdamned decision while he is here, while I have to watch him, to nurse him, to be strong.

Not to mention my asthma, which this week has been kind enough to flare up for me (smog and stress, my foes) so even if I have an hour while he sleeps, when I try to let some of this -emotional blockage- out, I just end up crying a few sobs, and then gasping for air as an asthma attack hits.

I am quite thankful for my mother. For her being there for me, for us, today. For the hug. I don't get hugs from Wash anymore, kisses really either. I think that part of his brain, himself, that could, that wanted to give ME comfort, I think it's gone.

I'm out of words. My brain just locks up. Rationally, I know what is coming down the line, I know the process, I know the stages, I know the signs.

But, as much as I try and strive, I'm not a fully rational creature. I have emotions.

I have memories.

The pain is overwhelming. I do not want to imagine how much worse it will get, how much more I will have to deal with at the very end.

The tunnel seems much much shorter now though.

It's not a light, it's not something peaceful, beckoning, calming.

The tunnel is ending and I can hear the train coming at me.

I should probably also eat something today. Nothing appeals to me.

No more good/bad days. Now we have good and bad hours in each day.

I hate myself in the few moments when I wish it was over. Because I'm not ready. I'm not ready.

Not even Joss, Jane, and Marti can stop the tears today.

'Where do we go from here?'

He can't run, he can't walk, he's getting ready to stop crawling. I wish there was a cure, an answer to pick up my Browncoat and carry him.

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.