Tuesday, July 31, 2012
Monday, July 30, 2012
Wash had some severe pain this morning.
Literally screaming, waking me up.
Hospice had his nurse talk to us and he got pain meds. They did help. He had almost a full breakfast and a snack.
The nurse checked in again this afternoon. It could be a side effect of one of his meds, but perhaps not likely as nothing has changed in about 2 weeks.
He had more pain medication in the afternoon when he started feeling the stabbing in his joints again.
He's been asleep now for about 2 hours. He said he was feeling (after meds) "I don't hurt, I feel warm and fluffy."
Aephie is catloafed at Wash's feet on the bed. She and Leto have been taking turns today guarding him.
I'm going to try and get a short nap in today. I have a horrid feeling I might not get much sleep tonight.
He had to put the LEGO building on hold for a little while, moving for him hurt too much.
Hospice is being great right now.
I am very, very tired.
Sunday, July 29, 2012
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.
Thursday, July 26, 2012
Reason 4848474575500299292827 why I love my husband, Wash; he gets a LEGO set for a Star Wars fighter and 15 mins into building he says, "You know, Tashi, with a little tweak, I can make a Mark II Viper!"
30 mins later; "Tashi! If I turn this part upside down it looks like a DRADIS for Kara's Viper!"
....This guy. I love him.
//Guess I need to get a copy of Caprica for him to watch now. We've done BSG twice this year.
Tuesday, July 24, 2012
I've been dealing with my depression lately.
Wash is not strictly "declining", but, it truly does to me seem like there is "less" for him to live for. He's fighting, but for what? At this point he says he wants to still see TDKR. He wanted to see "The Hobbit", but I think the trailer is really honestly all he will be around for.
Brain cancer is so odd. He can complete two LEGO sets in a day, or in two weeks. His brain can still build, but a lot of the other stuff is starting to go.
I have not gotten to the point of bibs yet, but he's essentially using an "adult" sippy cup. His sense of co-ordination is worse even than mine. Thankfully no falls lately, but he's had to be better about using his cane or walker for EVERYTHING.
It helps though.
Our awesome neighbours continue to be awesome. A couple of times when Wash has had an aide over I've gone to just chat or vent at their place. (they are in the same row of townhomes we are) N.* has even traded short stories with Wash to read! She still helps us water our garden and cooks occasionally for us.
He mostly says/does the same thing over and over now. We watch the same show or movie 2, sometimes 4 times before he "remembers" he has seen it before.
"Yes, dear. Thank you. Ok, Wash. Yes. Do go on."
His anger comes in longer periods now too. Sunday night was fairly awful. Even after speaking to a Hospice Chaplain on call, it took almost 2 hours for him to really get a hold on his own emotions.
I dislike feeling what I have been lately. I worry way too much. I wonder if/how happy he is.
I worry about his rage, his pain.
I wonder if the thing I wanted most with my heart on my birthday almost three years ago is something I have to let go of now. I want him to be living because he wants to, not "for me". It's much harder to say that out loud though, than merely to write down.
He's going to attempt to see and talk to his mum this week. I don't speak of his family on the blog anymore at Wash's specific request; he doesn't want some details "out" right now, he still doesn't want to share/show his emotions.
All I can say, all I will say, is please Dearest Readers, send him thoughts of love, calmness, or even kind prayers.
Mostly what he does is say he wants to do something, but with his "drama", it is like there is a block preventing him from ever moving forward.
What I want for that situation does not really matter. I want what is best for him, what his mental and emotional well being needs. Not what someone else might want for him.
Done. Moving on.
So, when he is not taking anger out on me, he's been enjoying some time with his aides and building and filling our home with LEGO models. The cats do not seem to mind, and he really enjoys playing after he builds, it's nice when a couple hours go by and everyone is happy.
I've been trying to take some "mental health" breaks for myself as well, actually get out of the house when I have an aide to help/watch Wash. I know there is worry for me after he is gone. I worry about myself; enough to worry but not yet enough to do much more than starting to see I'll be ok if I leave him for an hour with an aide.
The future is still too painful to think about. The 'What After' part.
I've seen Death. Changes happen to a person.
I'm wondering if it's just brain cancer, or if some of Wash's changes are him moving closer to his end?
So many questions, so much wonder, so little certainty.
To some specific people who have been reaching out to me- thank you. Thank you for telling me I'm not alone in this. Some nights and early mornings it does feel so isolating, but I do try to take comfort from those who have gone before.
The very worst thing to me about GBM? Even more so than knowing at some point I will lose the man I loved and hoped to spend the rest of my life with, is knowing there is still no cure, and there *will* be others who come after who have to fight the same battles. The ACA changes some of that for those Americans with brain cancer, but these tumors hit people around the world, not just here.
I feel like I'm the only one, but at the same time, I hate knowing I'm not.
I would not wish this even on Jan Brewer.
There's a feeling of change in the air; friends all moving, new jobs, new schools, new children/life in the world.
I feel like we are the only ones stuck still while everyone else moves and dances their lives around us.
His birthday is in two weeks. I know (or is it hope?) he makes it that far. Live hour by (hopefully a good) hour, day by day that he wakes up for, and week. At this point, I'm not sure how to think or live farther ahead than that.
/Trying to write my depressive thoughts out of myself today. I hope it works.
*Not real names/initials
Sunday, July 22, 2012
Wash had a tough week. He was very much himself, which can sometimes be painful for me; he knows how far gone he is, how much he has lost.
The up side to that is he was feeling in control enough to finally go see "Brave" tonight.
It was lovely. We went with a college friend of mine and got to catch up with her for a while after the movie too. We might start meeting weekly to chat and catch up.
My morning was hard. I was crying a lot and trying not to sink into a real depression. Since Wash has been more "present" he asks me a lot of things that make him sad; and me too.
It was a wonderful blessing to get to go out tonight.
We had a packed small theatre, but the kids were pretty well behaved. More so, the parents were super attentive to their children and kept them quiet and were very careful to not interrupt or disturb the other patrons when they had their 6-8 potty breaks. There was even a baby; but ze slept through almost everything and when ze whined a little bit, zher mum took zher right out so as not to disturb anyone else.
Perfect way to do it.
Wash was dancing in his seat the whole movie through. He bumped my broken toe a couple times on accident, but I just dealt with it.
The good part for me was the way he would reach over to hold my hand during the movie. The way he squeezed it at the few scary/dramatic scenes. His smile at the end of it. Then, the best part; during the credits (of course we stay for the Easter Egg!) Wash spotted the name of a Pixar worker he knew and acted with back from the bay area. Apparently, he also had his nickname in the credits, which made Wash literally stand out of his seat and "Whoop" in joy for his friends' success.
That's the kind of person Wash is; he cares and he loves and enjoys seeing his friends and family succeed and be happy.
We came home and saw some friends sent him 2 more LEGO sets. Now he has some Ewoks! He really does adore those blocks, and they do seem to help his cognition. Double happiness.
I started my day with 90s music, good comedy, and Phil Hartman to stop my tears.
I'm ending my night with bagpipes echoing around me, a huge smile on the face of the man I love, and a feeling of love and friendship in my heart.
Hope comes in many different forms to me.
I'm starting to feel some again.
Thursday, July 19, 2012
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).
Tuesday, July 17, 2012
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.
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.
Thursday, July 12, 2012
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.
Wednesday, July 11, 2012
Tuesday, July 10, 2012
Monday, July 9, 2012
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.
Sunday, July 8, 2012
Things will never be back to "normal".
I won't go "back to [my] life".
I'm changed. Forever.
If not purely by my marriage and almost 4 years of living with another person.
I'm not "The Queen of Death". I'm not "Bones". [and ye gods I have hated those nicknames]
I'm watching my husband die, more and more everyday.
I'm not a wife anymore, though I've kept all my vows.
I'm a nurse, a help, a guide.
What becomes of me when he goes? I've done the statistical odds of dying at the same time as him, it's not a number in my favour.
I left college.
I left my work, my job, my contacts.
I never was smart enough to find a cure, to save him.
We never got a house, only our little rented "home" that I'm going to have to tear apart even before he dies.
I'm going to have to pack away my books, my closest companions and friends.
I'm going to have to put away things which we both love, but cause danger.
There is so much change.
I cannot see myself on the other side. I cannot see how *I* will remain with that much change.
I'm already so different. Who am I now, who will I be then? Will I have any part of my own true self left?
I've given so much away already.
Given so much of my life to him, to keep him going, breathing, smiling, loving.
Must be a bad day. My movie lineup is "Once More with Feeling", "Harold and Maude", "The Royal Tenenbaums", and if those don't work- JT's "Titus".
I'm leading someone, but I'm lost. He's mostly leading me now, leading to the end. Saying goodbyes.
Soon, he'll go.
I'll be lost again.
And then, alone.
How can that ever lead to "normal".
How could I go back to what I was?
I have a few hours alone. I've cried, sobbed, and had two asthma attacks.
I'm going to go sit in the shower and probably cry more.
I try to think about the details of the next couple weeks and my brain just locks; there's so much pain it won't let me think about it. I just get headaches.
I want to clear my head and bowl.
Friday, July 6, 2012
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.
Wednesday, July 4, 2012
Tuesday, July 3, 2012
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.
Sunday, July 1, 2012
So much stress and drama for days.
Late night Hospice visits from nurses.
Thankfully Andy* and Lynn* have been around a TON this past week, outside their own stuff to help both of us. Errands, movies, laughs, from the little to the big. It's vital to have those friends who will be there for you. Like making a commitment to Wash and then keeping it. For months/years. He needs that in his life (outside just me) and at least we have close friends who can fill that need.
Same with being respected. A patient says, "I can't do this", it's best not to question. Unless you are the patients' doctor.
I've met some awesome Hospice workers this week. I'm very thankful for that.
Wash has asked me to keep specific things out of public for right now.
I'm glad for friends at times like these.
*Not their real names