Sunday, July 29, 2012

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.


  1. You are amazing.
    Reading this I recall when we made my mother comfortable in her last weeks as she wound down her life. Having familiarity, as much normality as we could offer and the dignity and respect she had during her life meant the world to her and it was a final thing we could give her.
    I have nothing to offer, other than the truth that by making his time comfortable and what he needs it to be is the kindest thing you can do. As you say - you are trying and that is all anyone should ever ask of you. And I promise you...the sun will shine tomorrow. And tomorrow. And tomorrow. You are not alone. :)

  2. Hugs to you. I have a minute knowledge of what you are going through. I've lost my father-in-law, an uncle and a cousin to GBM. But I can't imagine losing my husband. How incredibly strong you are. Hang in there. There are lots of people sending positive thoughts your way.

  3. You've a lot going on there, I can't imagine. I notice lately that Mom seems to have some issues with her short term memory. It saddens me and I know she's scared at times. Is it wrong of me to think she can still get better? Even when she thinks the opposite?! ::hugs::

  4. During the show Political Animals, Sigourney Weaver says "most of life is sadness and hell". I'm so sorry this has come to you at such a young age.

  5. I have been following your blog for several months now and although I have no advice to give and no relatable stories to share, my thoughts and prayers are with you and Wash. I only wish I could help in some tangible way. If you have any questions about fish I may be able to help on that end! Remember that new life abounds (in the form of fry) and that the world is full of small miracles every day. You have an amazing support system in your readers, whether they can give you a real hug or just a virtual one. Keep your head up and as Dory says..."just keep swimming."
    Love from South Carolina,

  6. My girlfriend lived through this. Her fiance died last spring after a long illness and months in the hospital. They'd been together 10 years and those last 2 were basically nothing but chaos for her, including living out of her van for a while.

    You will need someone, several someones, to take care of you. You're such a selfless, tough and wonderful person I truly hope those people will be there for you - you deserve that and so much more, too. If you can find a way to have a strong routine, a life that has many predictable elements, that will probably help you.

    There will be unexpected moments that will wreck you. The ending of season 2 of Dr Who was a huge trigger for her. There will also be unexpected moments of remembrance and fierce, uplifting love; at first less, but later much more than those bad moments.

    It does get better. A year later she's come so far and I'm so proud of her. There are so many avenues for guilt, but try to tell yourself, and have your friends tell you, over and over, that you did the best you could and recollect over those times of solace for Wash - the Taco Tuesdays, the movies, the Lego sets, the walks together, curling up together to watch Firefly.

    I told my girlfriend that if I could, and even though I love her so much and all the difference we've made in each others lives, I would wind back time and give her back her fiance. We'd never know each other but it would be an acceptable price to pay.

    I've been reading your telling of this awful tale since you still posted on Jez and I wish the same for you, truly and deeply. Since those wishes can never come true, I wish you the love and strength of friends and family, a future with as many gifts of healing as can come and, the eventual understanding that you survived the hardest thing one person can do and that you acquitted yourself honourably and admirably.

    Much love.