(no subject)

[zyzyly]

I'm waiting for Arlina's pain-control pump to beep, so I can change the bag and go to bed. At the current drip rate, the bags are lasting about 55 hours, so they can run out at pretty much any time of the day or night. It's a ten-step process to change out the bag and reprogram the pump, but it really only takes a couple of minutes. I have gotten pretty good at doing it half-asleep. All those years of working nights pays off at last.

I end up getting up 3-4 times a night anyway, to give meds, make food or tea, help her to the commode, or just to comfort her. I have no problem getting back to sleep, and I don't have anywhere to be in the morning anymore, so it's not a big deal. I'm tired all the time, but I don't think it's from lack of sleep.

I don't miss work, which is kind of a surprise. I had brought some project stuff home with me when I first took off, but it's still sitting in my briefcase, untouched. And there it will stay for the time being.

I don't do much other than care for her and keep the house from falling apart. It takes a lot of time, really. She can do less and less for herself each day. Yesterday she could walk to the bathroom, but today she couldn't. I just kind of move from task to task throughout the day, and meet her needs as they come up. her family brings food, so I don't ahve to cook much for her, except breakfast. I don't do much in the way of cleaning, except dishes and stuff, but I do make the bed. Somehow a made-up bed makes everything seem less cluttered. It also serves as a temporary flat surface for dumping stuff.

She got mad at me this morning because she didn't like the way I made oatmeal for her. It's hard sometimes, because her needs can change from day to day. Doing something right one day is no guarantee that doing it the same way the next day is going to be successful. We cry over this stuff--it's the inevitable frustration that comes with where we're at. I know in my heart that I am a good caregiver.

I get lonely sometimes. She sleeps a lot, and even when she's awake, she doesn't always feel like talking. There are a lot of phone calls, mostly from her family who want to see how she's doing. A scattering of friends call periodically, but that has dropped off quite a bit over the past few months. I cried about this a bit the other day--"where did everyone go?"--but really, we have a lot of people supporting us. It's just that there are moments where I feel all alone.

Sometimes in the afternoon, if she is settled and comfortable, I'll sneak out to the local coffee house and get a double espresso. I'll sit for a while and write in my journal. I savor these moments. My paper journal is a lot like this one, skipping from one thing to another, but probably more immediate and less reflective. It's the raw material for what I put here, although I haven't had the chance to write in a couple of days, so none of this is in there.

It's beeping now. Bye.

Comments

[(Anonymous)]

If I was sick, I could only hope I had someone as loving and gentle to care for me, as you care for Arlina. You are, in my eyes, a hero. ((((you)))

[wordweaverlynn.livejournal.com]

You are both in my daily prayers.

[myasma.livejournal.com]

thank you! prayer is so powerful.

[poetbear.livejournal.com]

i think you're a hero for all of us,
Mike. love and prayers for you both.~paul

[myasma.livejournal.com]

thank you Paul, we are grateful for your constant support.

[waning-estrogen.livejournal.com]

no wisdom for you,
but a lumpy throat.
take care.

[whipporwill.livejournal.com]

yeah. and a sigh, a tear and a smile. :>)

[myasma.livejournal.com]

you too!

[zhenzhi.livejournal.com]

*gentle encouraging hug* you are doing so well, you really are. :-) xoxo

[myasma.livejournal.com]

thank you, my friend.

[ldygwynedd.livejournal.com]

My favorite coffee drink is a breve. Coffeehouses are good things.

Thank you for sharing your days with us. I listen and I care.

[myasma.livejournal.com]

hey, what's a breve?

[ldygwynedd.livejournal.com]

it's a latte made with half and half.

It's a meal for me.

[daisydumont.livejournal.com]

on bad days post-chemo, i function somewhat like that, and i see here a likely map of my future. it won't be much consolation to you, but i want you to know that your example here in this journal, not of perfection maybe (i think i know you well enough to know you'd say you aren't perfect), but of devotion and care and survival skills, is intensely heartening to me. you have my phone number if you get the urge to talk outside of family.

[myasma.livejournal.com]

I pray for a different future for you, but whatever comes, I know you will get through it.

[greymeowsr.livejournal.com]

Often the reactions have nothing to do with the oatmeal. Try not to internalize such things. You are doing a splendid job of care. It isn't easy. yf, Tom

[myasma.livejournal.com]

on one level, I know that is true, but my heart is caught uanwares sometimes.

thank you Tom!

[blistermoth.livejournal.com]

more *hugs and prayers*

[myasma.livejournal.com]

thank you!

[sly-redux.livejournal.com]

She's been so brave. It makes me want to cry that she had her bit of release over oatmeal.

My heart goes out to you both.

[myasma.livejournal.com]

Yeah, I have kept waiting for the anger, but she has been so...saintly about all this. It is very humbling to be in her presence sometimes. Hearing her grouch about oatmeal is almost a relief.

[sly-redux.livejournal.com]

She needed to get it out, I'm sure.

A few short points...a few points short

[felixbunay.livejournal.com]

I've been feeling morose over the coronation earlier this week. But I've got a support group of about 50 million there. So, four years is a long time, but not forever. Now the Supreme Court, on the other hand...

Anyway, that's everybody's problem. No use feeling like it's my own personal hair shirt.

So, I know LJ is a nice diversion from work once in a while. I hope it's good diversion for you, too. It's a thousand little things all strung together that'll see you through.

Hair shirts are in fashion these days

[myasma.livejournal.com]

LJ is a wonderful diversion--one that I can take in bite-sized pieces.

Is it december already?

and, by the way, thank you for your gentle humor--it is one of those thousand little things that makes a huge difference.

[fried-pearl.livejournal.com]

I think of you both every day, and wonder how you are doing, how you are feeling. I am glad you have the release of journaling, and a coffeeshop that is close by. Blessings to both of you and many prayers.

[myasma.livejournal.com]

anbd blessings back to you!

[vaysha.livejournal.com]

wishing I could be a more readily available leaning post.

be gentle with yourself friend.

[myasma.livejournal.com]

I wish words could tell how much your support has meant to us!

[ahsu.livejournal.com]

Just thought I'd check in and let you know I'm reading and "listening." There's nothing much to say at this point except that I'll be following quietly along, with love, during the next weeks.

[myasma.livejournal.com]

thank you for being out there for us--it makes a big difference!

[kitsune22.livejournal.com]

I'm sure you know not to take the oatmeal thing to heart. It is a control issue and her not having much right now, and not about you being a bad care giver. You just do the best you can. It is inevitable that people tend to retreat when the going is the hardest, so much of it because they don't know what to do. Take it one day at a time and make the most of the moments that are good.

It is also a fact that I have learned, that people will bring you oodles of dinner and supper foods, but inevitabley breakfast is a bit short. I am a fan of the muffin basket.

My heart aches for you. It has been many years since I dealt with these thing, but I remember and offer my sympathy.

[myasma.livejournal.com]

One of the things I do to find peace is to bake. She never complains about my bread!

[puffpastry.livejournal.com]

Several of my friends are on your friends list, like waypasttense and lisalemonjello, and I found your blog through them, two days ago...and have been thinking of you and Arlina often since then. Your love and the honest, frank, brave way you two are living your lives -- with such respect and compassion for what it means to be human -- is profoundly moving to me...at the risk of sounding like a Hallmark card, you've had an incredible effect on my life without even knowing it (without even knowing me!). Please know how many people are thinking of you, both of you, and sending you so much warmth and peace and good wishes. You're not alone, ever.

Many hugs, and the hope that there will be some good moments today.

[firestartermsu.livejournal.com]

*hugs*

... Sometimes that's all you really need to get by ... a great big hug.

[myasma.livejournal.com]

Oh yes!

[idasusan.livejournal.com]

Mike, Love to you and Arlina...
I thought you were getting hospice help...at least in the daytime. Am I wrong?

[myasma.livejournal.com]

We are getting hospice help, but it is not a constant presence--they come in and do things, and then leave. They're very helpful, but I am the primary caregiver, which is ok with me. I can't think of a better gift for my wife than to be able to offer my care.

Arlina asked about you yesterday, and wanted to know if you were doing ok.

[idasusan.livejournal.com]

I just worry that you will get too tired....

How sweet that Arlina thinks of me now and then... I am doing well. I am at the end of the first set of xeloda. Then I have a week off of everything. On the 15th I have oxaliplatin and then start more xeloda. So far no more "d word." Perhaps that first bit was something else entirely, like eating the wrong thing.

More love to you and Arlina.

[whyaduck.livejournal.com]

You're a good man and caregiver Mike. My thoughts are with you both.

[myasma.livejournal.com]

thanks! it's good to know you are there.

I think about you too, and wish you peace.

[hagweena.livejournal.com]

Ahh Mick, you make me want to be a better person. You are so tender and caring. I think of you and Arlina often and offer up prayers for continued strength which you both have in abundance.
Suzy

[purple7luv.livejournal.com]

You are a hero, in the biggest of ways. (and so much more than a caregiver)
You and Arlina are never far from my mind. Warm warm mental hugs from here for the lonely moments, Mike.

[waypasttense.livejournal.com]

I was a hospice volunteer for five years. During the last year I was a home-based volunteer. I used to go hang out at the home for 4-5 hours so the caregiver could get some rest, see a movie, get a bite to eat. I'd do light cleaning, make a meal, read aloud, play scrabble, whatever. Does your hospice program have such volunteers?

[mactavish.livejournal.com]

What an eye-opening intimacy you're dealing with.