Learning

I am learning to grab moments when I can because there just aren't going to be big blocks of time for awhile.  I am learning to relish even a small joy, because that one tiny thing may be the thing that sustains you.  And, I am learning, really learning the true value of rest and not waiting till you just shut down completely before you rest.  In racing it's called pacing yourself.

I am also learning that pacing yourself is not a shortcoming.  Doing what you can do and then resting when you need to is actually more productive than allowing yourself to be so overwhelmed that nothing gets done at all.

Technology is such a double edged sword.  It keeps us in touch with people-but it can also result in telling and retelling each thing that happens to us.  I think it can keep us bogged down in yesterday's sadness or even yesterday's joy.  Yet, the passing on of knowledge and experience is what makes us human, at least in part.

I'm becoming interested in art again, in writing, maybe even painting or drawing.  I'm going to a painting thing in a couple of weeks-one of those painting party things where you paint a pet (and drink wine).  I'm looking forward to it.

It's been very hard to get back into the idea of being social again.  I kept up with flyball practice all through Mom and Dad's illnesses.  I just made up my mind it was the one thing I was going to hang on to-and I'm glad I did.  It kept me sane and my dogs sane-it was a good choice.  Training keeps you focused on the task and in the moment-always a good thing.  But I also need to venture into a little soul searching and abstract thought-a little bit at a time.

I am also working on my own health.  I finally went to see a doctor and was diagnosed with both osteo and rheumatoid arthritis.  I knew one or the other was coming-wasn't expecting both but I had premade the decision to start a immune suppressing drug if that was what was indicated-and it was.  I was not prepared for the feeling of doom this created.  After a few weeks I feel so much better and hopeful that I feel my decision was correct-I'd rather have less time but be able to move freely.  It was a quality of life choice and now that I can get around better I'm happy with the choice. 

So, there is life left within me still.  Mom is doing well and is very happy in her new home and I am ever so grateful it's what she wanted and not something I had to decide.  The rest of life is just continuing to unfold-but I'm looking forward to each thing as it comes-and learning not to label it-just letting it be what it is.  Too bad someone already wrote that song.

Another step

Mom moved into assisted living today.  It's a nice place and she's wanted to go there for several years now-so the experience was not anywhere near as bad as it could have been.  That said, there was a finality to it all that was sobering to us both, and I'm sure scary.

She doesn't really know what the rest of her life will be-I don't know what the rest of her life will be, nor what mine is going to look like either.  Yes yes, none of us do, but typically we have a greater illusion of knowing than we do at the moment, and at THIS moment, I miss my illusion.

But mostly, I think we are both just exhausted.  I came home, cut Solo's nails and went to sleep for a couple of hours.  I woke up to let the dogs out, will eat something, put the dogs up and go back to bed.  Tomorrow I'll spend time in my home for the first time in months-then go do some picture hanging at Mom'/s new digs.  Then I'll get ready to go back to work on Thursday.

So Mom is in a new place, Dad is in the ground (and a stream) and I'll just take things one step at a time because the only long term plan I could come up with at the moment would be to go catatonic.

More for me than anything else

I am writing this just to write it down.  Dad died on September 11 and it happened pretty much as I told him it would-he got more and more tired, went to sleep, didn't wake up.  He didn't appear to suffer much and I am grateful for that.

Two weeks later Mom had a stroke.  If she had been home, she would have likely died.  I was out of town, and my brother, who had spent the weekend with her had left.  No one would have found her until Monday morning and it would have been too late.  But it wasn't.  She made a full recovery, however recovered still requires assistance.

I've been home with her while we wait for a room to become available at the assisted living facility.  She's wanted to go there for a couple of years, and while I'm not thrilled with the circumstance it is what she wants and I am grateful for that.

I'm tired.  The only 24 hour period I've had to myself was the day before Mom had her stroke.  It was a good day though and I'm grateful for that.

Trying to summarize the past months into a few paragraphs is futile.  There have been other tragedies, losses, trials and tribulations because life just doesn't give you a pass when you have bigger stuff going on.  I've coped by taking each thing as it happens, and deliberately not thinking too far ahead.  I've tried to spend more time in the present.  I try to spend a lot of time looking at things from Mom's point of view.

Every spare moment is either spent sleeping or training my dogs.  There aren't that many, but I'm grateful for the ones I have.

62 Years

Today is my parent's 62 wedding anniversary.  It will be their last.

The frantic days of diagnosis and getting things in place are gone.  There really wasn't a window of time to get things in place before the folks got confused and forgetful, so I'm glad I did it.  They recognize and trust the people who come in to care for Dad.  It sounds like a team, but it's not.  It's a nurse once a week, a home health aide 3 times a week, and me daily for feeding and cleaning.  A neighbor's pastor comes over once a week to visit, and I appreciate that as well.

Daddy asked me a few weeks ago "How will this kill me" and I really didn't know what to say.  I said "You will sleep more and more and then one day you won't wake up."  He was quiet for a minute and said "that doesn't sound so bad."

The truth is, if he's lucky, he will starve to death before the cancer takes hold somewhere that would lead to a more unpleasant death.  So many ways to die.

I take his vital signs each day and watch him slowly waste away, his blood pressure and blood sugar fall.  When my stomach prolapsed a few years ago I was near death and didn't even realize it, and as I recall it wasn't unpleasant-but of course I didn't know I was dying.  Still, I can say for certain starving to death doesn't actually hurt, which is good to know.

I think we actually fear pain more than we fear death.  I know I do.  But years of looking after daddy, standing through crisis and staring down death and saying "go away" makes it all the more frustrating to not be able to do that any longer.  It's hard to give up.  It's hard knowing what will happen, but not knowing exactly when.  It's hard acting like I know exactly what I am doing because that seems to comfort Mom and Dad.

I miss my life.  I miss tournaments and training and caring about how fast my dogs run.  I still go to practice on Sundays with my pup-letting him get behind would only create more grief when the day comes I care about these things again.  I work the adults at home to keep them in shape, and we train silly tricks and such.  That really has nothing to do with caring about racing-I still do care very much about my dogs, who are working dogs and must work.

Actually I sat down and made the decision that that is the part of life my life I would keep throughout this.  A little anchor to find my way back when this was all done.  I think that is one of the ways dogs look out for US-reminding us that life goes on, the dog must be fed.

I worry about Mom-she really doesn't have that anchor.  Her husband of 62 years will die, she will move (her choice) and then what?  She faces as much unknown as Daddy does by dying.  A death of her life as she knows it.

But, today we will hang out and watch TV and just be together.  That's really all we have left to do.

Bobbing Along

I love the Taoist proverb about the old man being swept down the river.  He washes up on shore and two bystanders ask how he fought the mighty river.  He replied "I did not fight.  I just held my breath when my head was under water, and breathed deeply when I my head was above."

I remind myself of this often, and more than often in the past week.  Daddy got his feeding tube installed, had several scans and I had a medication review with his primary doctor to try and figure out what he was supposed to be taking.

Then we had the results meeting with the oncologist to tell us what we already knew.  It is terminal and there is no treatment available.

Then I spent a lot of time on the phone with different home health agencies, some ok, some not so ok.  For instance, some will tell you medicare does not pay for X, when in fact they don't pay THAT particular agency for X.  I finally gave up on being nice and told the last person I talked to which hospice to refer me to because that's what I wanted to do, and things began to unfold rather smoothly after that.  Most likely because I had sense enough to pick an organization that already worked with Dad's healthcare benefits.

As with Uncle John, I still suffer from random anger at how people take advantage of people who are upset and don't know or question.  Hospice seems to suffer less from that than home health care, so if you are fortunate enough to be in the last 6 months of your life you may not ever have to deal with this.

As you might suspect, it's a little more delicate with two living parents.  I have to support both emotionally, and that includes being firm and sometimes just being the person that gets vented at.  I'm getting really good at disassociating and just allowing myself to not be the daughter being growled at but being a friendly listener letting an upset person vent.

I'm also getting good at feeding tubes and shots.  I've never actually dealt with a feeding tube on a human before and the only human I had previously given a shot to was myself, but the skill set transfers pretty easily.

It's amazing what and how quickly people can accept things.  The tube I thought was going to be a huge ordeal and it's just not.  And it's helping.  His color is better, he's more alert and his vital signs are more stable.  It's a temporary victory, but it will buy us a little time to do whatever else it is we need to do.

I'm juggling as best I can work and the end of my father's life.  I will hang on to work as long as I can, and go back as quickly as I can when I have to set it aside.  Death has a way of making you feel incompetent, and I need work to give me that boost.  And it pays the bills.

I'm a raw feeder (for the dogs) but they are on kibble until I'm not doing medical stuff.  That made me a little sad, and then it made me sadder to realize it's only for a couple of months.  Most things make me sad right now.  Even having a happy thought can make suddenly burst into tears.  It's the emotional version of the river-cry when you can, hold it back when you can't.  It' keeps you from drowning in a river of tears.

Tail Spin

This year has not turned out as planned, but then when do they ever?

Life is challenging right now.  I went for a routine eye check in  January and found out I had pretty significant cataracts in my left eye-when there were none in September.  I went back last week and while I already knew the left eye was worse, I found out the right eye was starting up too.  So, in a few months I'll get myself some bionic eyes.  It's not a big surgery and the eye doctor assures me it doesn't mean my body is rapidly deteriorating-it's just one of those sucky things that happens sometimes.  My cataracts are over achievers.

This was on Thursday.  The day before I learned my father has esophageal cancer, also an over achieving kind and there isn't likely much more time for him.  They are putting a feeding tube in on Tuesday, we are going all over town for boatloads of tests and on Friday we'll sit down with the oncologist and talk about what is best for my father, and for my mother.  Mother has had her own difficulties and is finding walking and daily living a struggle too.

I'm juggling work, which I have to do, Mother, who is frail and losing her husband, and my father who is losing his life.

I think a lot about lessons learned from Uncle John-who taught me how to do all of these end of life things.  I really didn't expect such a difficult final exam-but I'm going to give it my best shot.

I thought of telling John he had Parkinson's just as I was telling Daddy he has cancer.  It's both a horrible thing to have to do and such an honor, if you can call it that, to share that moment.  I'm trying to look at all of this as an honor.  I'm sure I got that concept from the Tibetan Book of the Dead or some place, but I like it and i'm going to use it..

My mind is kind of swirly right now-deep thoughts and then a silly notion will just surface.  I'm trying to stay focused when I need to, meditate when I can, and laugh as often as humanly possible.  Death is serious stuff, but you can't let it stop you from living.  My father was telling me about our neighbor who came over and when he heard the news he almost cried.  I blurted out "well your not dead yet" and we all giggled.  But it's true, he's not.  There are still things left to do.

I heard him say "I love your Mother" for the first time.  First time as in first time ever.  It's always been understood, but it seems now is the time to speak things.  So, I'll keep my ears and eyes open.  That was my vow to Uncle John, not to look away.  And I won't look away now either.

Of course, the fact that I'm slowly going blind may complicate things.  Oi VEY.  Is it whining to say sometimes it's hard to be me?

The Bigger Picture is Snowy

I can't believe how bogged down I am in the day to day.  The bigger picture seems to elude me.  But, I will keep trying.