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?

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.

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.

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).

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.

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.

Make your own Fate

BRAVE- EHRMEGAWD.

Holy crap, my eyes, my brain, my memories of my relatives singing Scots Gallic to me...!
It.Was.Awesome.

Now, in the theatre, we bought tickets to a show so we could get there early, and I was even the first in line to go into the theatre. We get the BEST seats (very back row, directly under the projector) and the kiddos and parents start coming in. No problem at ALL, until the previews start and a couple who came in 10 mins after the showtime decided to sit RIGHTNEXTTOME.
Nope.
"Are these seats saved?"
"Yes, for the people who came on time." Says I.
"No, really, are you saving these seats?"
"That one at the far end of the row is free."
"But, we want to sit here, and there's two seats."
Tashi says LOUDLY [during the previews!] "Fine, you two late comers who disturbed this whole row of people instead of sitting in the empty seats at the bottom of the theatre can sit here. Maybe next time if you arrive ON TIME you won't have a seating issue."

Yes, I told them off. No one in the theatre came to their aid.
Also, out of 3-400 seats, at least half filled with children, there was ONE, one kid- a little girl maybe 4-5 who was chatting at the movie the entire time. Every thing- "Oh mommy, look, treats! Mommy, the Queen! Mommy, she forgot!" etc. The WHOLE movie. Several other parents asked them to quiet, they did not. In fact, the mother was ENGAGING her child, "She did forget, good job!". 300 kids all behaving, but that ONE.

So, I remember why I hate seeing movies, but I also finally saw "The Hobbit" preview, so I know I'll be going to the midnight premiere of that.
[I got two free passes, but they won't work for "Brave"- no new releases.]

Also, I'm pretty sure I was the only person in that audience who could understand Gallic and the brogue one of the Clansmen had.

Wash did not attend the movie- he could not be mature enough today to handle it. I'll try to take him on a weekday, hopefully when there are less kids and other audience/distractions around. He ended up playing with P. the Hospice volunteer, and they played with Wash's LEGOS and KREOS and apparently built Starscream this afternoon. So, he'll see it soon, but I was glad for the chance to watch and really enjoy the movie myself, without having to watch Wash watch the movie and deal with him on top.

He's a lot calmer after getting some time away from me as well; this morning he was really angry with himself, which he took out on me. It was needed for both of us to get that break.

A long day, but a good one. I even ran into some old friends who've moved away, but are back visiting. Hopefully we'll have a chance to have them meet up with Wash again before they leave.

-I plan on playing with my Merida doll tonight.

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.

DAWN works

Yesterday Aelphie got into something NASTY- and had this mixture of sticky tar/gummy stuff on her back paw. I tried to clean it last night, was unable and had to leave her in solitary confinement until this morning.

She got a bath with DAWN soap at the advice of my friends and fellow pet owners, and wonders, it worked to get that gunk right out!

Though, it left a very very very angry and apple-smelling kitty for me.

I'm wondering where and when she will RagePoop.

Wash is talking this morning with the Hospice Chaplain, this time his "regular" one he's had since Jan. He likes her. I do too.

I'm not ready for him to die, for him to kill himself. I'm really not sure if he is, if he understands fully what he asks. Maybe, though, he does.

He doesn't want to exist in a world where he cannot communicate or create. He NEEDS to create to want to live. I think that part is fading, but not all gone. I think he wouldn't panic so much if it was already gone, I think though he's lost enough that even he now cannot hide from the facts around him.

His memory. That is the hardest for me. I truly dread the day when he doesn't recognize me at all- so far the very bad days he is just confused because the Tashi he expects to see is the one from 2009 and I'm very much not her anymore, physically or emotionally.

He comes and goes. He can have a few good hours, where he knows who he is, he remembers things, even tries to recite Shakespeare.

The rest of the time though, I'm asking him to repeat himself, because his language is slipping. He slurs a lot of words, mixes them up, or skips over half the conversation out loud. He's talking to me (in his head) but nothing is coming out. This often happens if he's trying to share something he read or saw on TV.

When he wants to, he can "put on his show" for 30 mins or so and seem fairly normal. Sometimes his voice is too loud and he's unaware, or he has a lot of random points to make, but he can pull off "his" normal; sort of.

He did speak to his father this past Sunday, which I'm happy for. However, he wants to avoid completely the issues with his parents and family, he doesn't want to address it, talk about it, make any decisions... which comes back on me. Unhappily.

He's getting some sleep at night, thankfully his lab results came back neg for a new infection. But, he's not going longer than about 4 hours now without waking up for some reason. Void, an itch, he's cold, leg spasms, he's suddenly awake....

Mostly it's the memory. Half the time, he can't stand to be in another room away from me, half the time I'm the "bad guy" when I don't let him act like a spoiled 5 year old "Have so many Oreos at 12pm you barf? Sure!"

It's one day at a time. It's watching this cancer take him away, further and further, day by day.

Finding the energy and memories of my own to remember why I do this, why we fell in love.

It's 1pm. Been a long day already.

-The Chaplain is having him call his parents once a week as a "homework" assignment. Maybe that will work better. I have to have hope about something.

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.

Bell, Book, Candle

Days sometimes begin to blend together. Wash is still on a late night schedule, so when I wake at 6am, after getting down around 3am, it makes for some long hard days.

He had a shit fit this week over the way he sleeps; we've been to specialists and his doctors who have all told him with his brain issues he needs to sleep with his head up higher than his body. This does not suit Wash well at all; he prefers to have his head as flat down as possible and his legs left up- pushing all the blood and excess fluid into his head.

So, he had a HUGE shit-fest about it on Wednesday- even pulled the "If I can't sleep like I want to, why should I be alive?" card. So, after making a plan with his Hospice nurse- because I remember his side effects even if he does not, we all said, "Sure, Wash, sleep how ever you want to." decided to test it out for a few days.

He looked like a chipmunk. His face, his eyes; they were so swollen. He had horrid headaches and light sensitivity. He also had a complete memory black out; whereas he normally is not aware he's missed something or forgotten, with this, he knew something had happened- but could not remember ANYTHING for the first hour he woke up. That scared him so bad he's gone back to sleeping how the doctors tell him.

I'm sad he had to learn the painful way, but with his memory issues, he just doesn't TRUST me all the time, even when I tell him I'm trying to save him physical pain. I don't know how long he will remember this most recent episode, but it's been about 3 days since and he's not make a fuss over sleeping upright yet.

We both had a talk with his folks on Sat; I spent about 30 mins in the morning going over with them how he is, how the week went, the bad issues. I pulled up Skype for him a bit later in the evening for him to talk to them. Lately he has been having some speaking issues; he mumbles a lot, speaks softly, and says things under his breath he is unaware of. So, talking on the phone for him can sometimes be a challenge for others to really understand him. Again, I think since I'm always around him I don't notice it as much until someone points it out to me; but he does mumble a lot more now and it's harder, I can tell, for him to find the right words, and get them out.

I'm starting to feel a lot more numb. I wonder if it's my own way of preparing for what is to come. I have to take things one day at a time, it's just too hard and complicated to try and have a future more than 7 days in advance, 30 months of terminal cancer has just done that to me. He doesn't understand time at all, it all comes back down to/on me.

At least lately I've found a bunch of good (some old) action and adventure movies for us to watch. It lets him laugh, or forget his issues. It's been nice to hear him laugh lately, he does it less and less.

I hate, I hurt to watch who he is slowly draining away from him.

Brain Cancer just drains away the man I love.

Frak cancer.

//Hospice Helper P. is coming over this afternoon to play with Wash for a bit and help him make some cardboard eclipse viewers (on the off chance we might be able to see it this sundown). Wash loves shit like this, but he's not been able to remember it. I'm hoping we can see it in AZ where we are; likely this is his last chance in his life to see a solar eclipse.

Missed

Had a few good days, some good moments this weekend.

I can't yet figure out if I should keep up my small journal/notes and publish them, or limit to when I can make a real fleshed out post?

It's hard to watch him die. To watch him slip away bit by bit. He had about 3 days/nights/period of hours in the week where he's been very "Wash". His personality just keeps fading. He comes around for friends, to talk, and always to play, but less and less.

Lately he's been making "jokes" about suicide. Hospice says this is his way of coping with some issues relating to his coming death. It's so so so so so tough for me to hear his "jokes". I cannot laugh or see humour in them.

It pains me to hear from so many people that they think I'm getting burned out or over-worked. These are almost always the same people that don't offer any real help or solutions outside of, "I'm worried."

I'm frakking worried too, but there's no one else. He loves me, and a part of his brain hates me too. He sees me as the "reason" why he's in this place, why he has so many rules, why he can't instead of being able to remember or place that emotion properly on his cancer, not the person who has to keep him safe from himself.

It's hard.

Last week I fainted because I ended up going 30 hours without eating. I eat about once, maybe twice a day now almost always after Wash goes down for bed, 10pm-3am. The rest of the time I'm watching him, which, even if I have a moment to cook, prepare, and eat a meal, I'm almost never hungry. I'm just so stressed watching and caring and dealing with his hatred and anger at me, I don't want to eat. Also, a lot of the food I buy is for him. I forget that I'm a person too.

I yelled at my brother G.* this weekend when he called right as I was heading into my first shower in about 5-7 days. He wanted to "chat" and I wanted to take advantage of my 15 mins alone to shower for the first time in a week. I guess for him it's harder to grasp since he lives alone and showers for 40mins every morning.

It's becoming so hard for me to explain to the people close and around us just how much Wash's cancer effects me on so many levels, how I'm so tied into him and his moods for the mere fact of being around him 24 hours a day 7 days a week for 30 straight months. Even most prisoners get a "break" from their cell mate daily. I don't like it, but I can understand that Wash's anger and rage are going to come out on the person around- me.

Dying is not easy.

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.

Tashi's journal 13:07

I wish I had something more to talk about than brain cancer. Than watching my husband lose himself, his memories, his personality; and am left with a shell. An angry shell.

He's spent the morning calling me a "bitch" under his breath. Not even honestly sure if he was aware he was doing it. He cried, "I miss my wife! I don't know who you are, you're not *my* Tashi." He recognizes me, but I am different. I've physically changed in the last 4 years, and a lot emotionally too. But, he wants Tashi from 2008- and he wants to be the Wash from then too; without cancer.

It's hard and fuck awful.

He said there was more I could have done. "You could have played with me more! All the times I was watching tv with you, you were letting me rot instead of playing with me!!"

Not exactly true. I don't want to play with him, I can't- everything he wanted to do was in terms of "killing" the other person in the game; and even pretend I can't play or RPG when the goal is to "kill" my husband! Before cancer, sure, but post?NO FUCKING WAY.

Also, he's non-responsive! Most of the two years he was chemo sick, too tired to even speak to me let alone play a game or communicate what he wanted to me.

I brought friends in to play with him. He got 1-4 games a week! Just not against me, and I guess to him, that's what counted.

I have played with him. It just gets hard to want to "play" with someone who is acting like a 4 year old when I also have every single responsibility for two full adults to do as well.

He can't see how hard it is on me; mentally, emotionally, and even physically to care for him, to care for my dying husband. To watch the person I should have had 40 more years with die before my eyes, and have his personality and memories stripped away first. He just sees me pulling away and hates me for it.

He doesn't, he can't see that I have to give myself space, I have to let myself start to mourn NOW, or else, there will be no reason for me to stay alive when he dies.

Revolver

Mornings seem to be the worst. No matter how I wake him up it's never "right". Then, he tries to "make the bed" and always gets mad when I re-do it properly behind him.

I love my husband, but I also love my bed and nice sheets. I love them to be proper and in place, and clean- no berry jam spilled onto them.

He does not always agree. Then again, Wash was not the one who worked for two years solid to save up to afford a nice proper adult 30 year warranty bed. I did. It's a bigger investment than any of the cars I've had. I've had insomnia since I was 11. This bed was the first I've slept on to make me like sleep and even WANT it.

Beside the point. Mornings are bad. He doesn't like to be woken up, he hates me watching him take his pills (but he won't do it otherwise), he hates being told to wash his face and brush his teeth. I take no joy in asking him to do it. He thinks I do.

It's hard to watch my husband, the grown man I married suddenly revert.

Things get so much harder for him.

Unlike toddlers who need help, but learn, he needs help but never is able to learn. He cannot remember new skills! That part of his brain is just gone. I get no joy from the help he needs. The only relief I do get is when he asks for help; when he's present enough to know he needs assitance, and asks for it. That's rare though, most of the time he is not cognizant enough to really understand he might be having issues.

Hospice folks say to try to let him do things on his own, when his safety is not at risk. BUT, even that has a downside, as most of the time I either have to correct and do it properly or safely behind him, or even just clean up. He gets so angry at me, because he cannot do things anymore. He's really angry at himself, or even the cancer, but because it is still just me here caring for him 98% of the time, it comes out directed at me.

The other issue is my own brain. I have Asperger's. It's difficult enough to try and cope with all this emotional shit poured on top of me, and the stresses, but I have no space. I have nothing that stays clean- he gets into EVERYTHING. I have made compromises on everything, my house is far more unkempt and unclean than I would EVER prefer, but I can either watch Wash or clean, rarely both. He comes behind me and messes things up again anyway.

I'm hoping he can stop trying to make the bed in the mornings. Or, at least, not be angry with me for going back and fixing it.

It's a hard balance between what can help him feel less frustrated and what I need Aspie and OCD wise to be functional.

The first hour or so that he is up seems the hardest. He's confused, angry, and needs structure outside because his own brain cannot structure things for him now.

It is hard.

Brain cancer is a nasty evil.

Epinephrine

So, one of the downsides of Wash's brain cancer is that every once in a while he hallucinates. Sometimes it is visual, sometimes auditory.

This means that often Wash will ask me to verify if he is hearing/seeing something correct. This also means he will wake me up randomly in the night to ask if I heard the "sound" he did. That's a bucket of fun.

But, sometimes he's not hallucinating.

So, for a day he heard buzzing in our kitchen. I said it was probably one of many things we have plugged in and the motor is making a sound. I was wrong! The next day we both saw 3-4 flying things in the light fixture in the kitchen. Since I will die if stung, I freaked the fuck out and ran outside. We called for backup and Andy* came by and he and Wash fought a brave battle that rages between 4 creatures 1" long with wings, and two fully grown human men with a can of RAID that shot a 20' spray.

The Men came out Victorious.

And I promptly called my doctor for an Epi-Pen refill and my landlord to get some Pest Control workers out here.

So, they came today, sadly with little warning. Which led to my last minute harried-ness this morning. We had help on Thursday and Wash actually told his aide NOT TO HELP HIM. So, the place was left a frakkin' mess. I am not upset at the aide, she was listening and caring for Wash, he just kept insisting her to leave things for "him" to clean "later". [I was having a long talk with the Social Worker out of the house at the time] So, Friday my house was a mess, and I was so busy and tired I couldn't do everything. And Wash was just happy because he was seeing a friend, and going to the Avengers movie, and getting to eat dinner out on top! So much fun stuff! For Wash, he cannot do more than one task at a time, and he forgets things. So, all his stuff he was going to pick up and clean, he did not.

Since I knew the kitchen had to be cleaned/cleared out for the pest guys to check, I ended up waking after less than 3 hours of sleep yet again this week (no naps for me, either!) to clean all the things Wash said he would have taken care of.

I know he needs to say these things to make himself feel useful, to feel needed, but all it does is add stress to me. Every time he puts something off- which is 99.999999% of the time, he never comes back to it. That's how his brain works. But, if I just do it for him, or if I do it after he says "I'll do it later" he turns his anger to me- "What, you don't trust me? You know it's your fault, really, you tell me I'm not allowed to do things when I want to!"

So, I just could not handle all the chores and work to do today, watching him and dealing with any help or issues or anger at me, dealing with the pest guys, and no sleep. It's all too too much.

I called my mum. Thankfully, she and my (step)dad agreed to watch him for a while today, let me work and rest a bit.

Wash was not really happy about this. He was confused, and angry and so mad that I "would not tell him where I was leaving him!". I had already told him calmly twice that he was going to stay with my mum today so I could work. He just literally could not remember even as I told him. So, he was pretty confused and angry when he left. He seems to think often that when he goes out for a day with someone else, I'm "leaving" him, "abandoning" him or the like. He just cannot grasp otherwise.

That's painful to see and deal with.

I did at least catch his mother up on things, so his parents really know. I just was not able to lie, to hold back, to be kind about it. He's not doing well. Things have changed, they are getting worse, and they very very likely will never get better again. So.

I cried a LOT this week.

Back to the pests, though! That was my histoire du jour.

Cleaned for 3 hours, and got Wash safely to my mums. He even got treats and snacks to go along with his sketchbook and ses 3 of "Fringe" to watch.

The pest guys came over, poked around a bit, checked outside, looked at my place and my 2 neighbours West of our unit, and came to a verdict of not Wasp, not African Honeybee (several colonies found locally in the last couple weeks) but Carpenter Bees.

So, our downstairs was treated, the outside, a crack in the wall between units filled, and the wooden fencing in my backyard treated too. Same for the neighbours.

Now it's noon, been awake for 5 ish hours, and have a few clear hours without Wash to try and rest this afternoon.

I think my biggest challenge will be to actually rest right now, today, and not use the next 4-6 hours to just clean without a Wash following behind me, or messing right up the things I just cleaned.

Thank you all, Dear Readers for your comments, support, and good wishes. I know, even though it's painful to face the truth, I'm coming into the final stretches with Wash.

I'm just going to do my best for him, and my best to be vocal about my own needs right now.

Creedence

Another bad night.

He passed out sometime close to 3am. I was up til 4.

He was just so confused and angry last night. He wanted to sleep alone.

This morning his meltdown was because he forgot how to work a dryer. "Settings? What are settings??"

More Hospice folks over today. More pills. More memories forgotten.

I woke up without him next to me this morning. So hollow inside.

Fucking cancer.

Thank you R. for the humor book- was the only thing yesterday I could laugh at.

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.