Happy Trails, Dad

Dad used to sing this song to us when we were kids.  It’s also fitting for the avian specialist in him.

Farewell to a gentle man and a scholar

Tuesday May 28

There was light rain today, as if the heavens knew dear old Dad was departing, and the paths were being cleansed for him.

He waited, it seemed, until Robin, the hospice nurse, arrived. She washed her hands and read a story to him related by a veterinarian about a family about to lose its dog to cancer. The end was a variation on “everything I learned, I learned from my dog…”

When loved ones come home, always run to greet them.

Never pass up the opportunity to go for a joyride.

Allow the experience of fresh air and the wind in your face to be pure ecstasy.

When it’s in your interest, practice obedience.

Let others know when they’ve invaded your territory.

Take naps and stretch before rising.

Run, romp, and play daily.

Thrive on attention and let people touch you.

Avoid biting, when a simple growl will do.

On warm days, stop to lie on your back on the grass.

On hot days, drink lots of water and lay under a shady tree.

When you’re happy, dance around and wag your entire body.

No matter how often you’re scolded, don’t buy into the guilt thing and pout … run right back and make friends.

Delight in the simple joy of a long walk.

Eat with gusto and enthusiasm. Stop when you have had enough.

Be loyal.

Never pretend to be something you’re not.

If what you want lies buried, dig until you find it.

When someone is having a bad day, be silent, sit close by and nuzzle them gently.

She lovingly stroked his hair while she read this to him, and I sat respectfully back in an armchair at the foot of the bed. Somehow I didn’t think to go to his other side and hold his hand. She asked if there was anything else I wanted to say. I went to him, touched his arm, held his hand, and said, I don’t know if he’s comfortable… She pointed to him and said, say it to him. At that he let go. She said, He’s totally at peace, and very comfortable. She said she watched his tongue and knew. He kept breathing through her story, and once she finished, he took a couple more breaths and then he went. I stood there dumbfounded, feeling like an idiot for not seeing exactly when he took his last breath. It was 6:30pm. Hubs said he saw Dad take the last breath and let go.

I felt guilty for spending the last hour of his life in the kitchen with Mom, showing her Dr. Oz on her smart phone. Mike spent most of the day with Dad, quietly in the living room, whereas I buzzed here and there, occasionally stopping to cool his fever with cold compresses, and moisten his mouth. I relayed messages to Dad, told him Dr. Jehan (his opthalmologist) called to say he was one of their favorite patients and they took special care with him; that he was very special to them because of his kindness, gentleness, and charm; that he was the same age as Dr. Jehan’s own father and therefore made him think of his father; that Dad had given him an example of his scientific papers and Dr. Jehan read them and appreciated his epidemiology work. Melinda, the opthalmology nurse who wheeled Dad to ER on April 26 had called earlier to check on him. They both said he would stay close in their thoughts and prayers. I thought that was above and beyond compassionate.

Yesterday Dad could still shake his head yes and no. He would suck on a toothette dipped in water to moisten his mouth. I read passages from the Bible to him, but my weeping probably made for lousy reading. His eyes remained half open through the past two days. The hospice nurse was finally able to close them tonight.

Hubs says I did just what I should have done and I should stop beating myself up.

On this last day we arrived early to head off a possible terrorist attack on my Mom (by my brother). As it turned out, she went to his apartment to sort out the visiting nurse’s exam/removal of sutures and run him around. The long absence made me nervous. Dad’s breathing, which was labored but regular in the morning, had changed to the spaced breathing they say precedes death. Hubs judiciously placed morphine drops in his mouth every two hours. She finally came home and had enough time to get over the trauma of the day before the nurse arrived. We had some quiet time with Dad around 5pm…

Earlier in the day I found some books I wanted to keep and I placed them in a box. It’s sort of symbolic of what I’ll be doing in the days to come.

I ate watermelon when we got home. It reminded me of Dad, of how much he enjoyed watermelon and oranges in his final days. I will miss him calling me by my childhood nickname, miss the fruit he constantly brought us, miss how he adored Hubs, miss the kindness and determination to find the good in this difficult world. I’m glad his suffering has ended and he no longer has to face frustrations, big and small.

The waiting is the hardest part

May 19 Sunday

Dad is still alert, eating watermelon and ice cream, requesting his favorite comfort foods, giving instructions and reminders in a hoarse whisper.  He chews cubes of watermelon, sucks out the juice, spits out the pulp.  We’re supposed to thicken his water and other liquids with a corn starch powder called Thick-It, but he doesn’t like it.  So far he’s only taking 15mg liquid morphine once a day, though his O2 needs have increased to 3 liters/hr.  He’s still swallowing medications and relieving himself.

We were told he would deteriorate quickly – in a matter of days, or weeks if he was lucky.  He said he was told two weeks, and as Thursday marks Day 15, he’s asked that family around the world be notified of his imminent demise.

Today he asked me to read passages from an old Bible he kept on his nightstand.  It had my name written inside, from the first Sunday school I attended in the U.S.  I was caught off-guard by this request, and I wept through the entire endeavor.  I’ve cried a few times in the past couple of days, but at least I’ve been able to express my love and admiration for him.  I don’t think he takes for granted the care Hubs and I have tried to give him and my Mom.  One always hopes, but there’s such a variation as to what “care” really means.

May 24 Friday

Alas, Dad looked great last Sunday, but lost a little ground each day since.  Today he sleeps.  The first thing he said to me when I came in this morning was, “I’m dying.”  He still ate a bit of soft-boiled egg, some watermelon and Boost (not a great combo), but not, “What do you have?”  Last Monday he asked the hospice nurse about physical therapy.  She probably laughed.  I’d given him some foot reflexology on Saturday and thought that might’ve contributed to his alertness on Sunday.  It probably just coincided with that final burst of energy we’re told precedes the period of not eating/sleeping.  I had a glimmer of hope for a second, but now I realize that was silly.

My Mom spent all day getting my brother discharged from the skilled nursing facility he was transferred to from the hospital.  Needless to say the facility was keen to get him out, though his surgery wounds are barely healed and the staples still need removal.  His body was full of edema and he was wheelchair bound when he first arrived there, but he’s now able to walk about, though he’s weak and tires easily.  Behaviorally he’s a bit better, if not completely in touch with the fact that my Dad is in his last days on earth.  I also don’t think he realizes how fragile his own health is.  My Mom swigged a large glass of wine and practically inhaled a Double-Double (In-N-Out burger) after that activity.  Perhaps she should’ve taken an Ativan as well…

We got home and the pool was 85 degrees.  Mike assembled the pool cover reel and declared swimming season officially open.  He swam, I dipped my legs in.  It’s a cooler Memorial Day weekend (in the ’70’s), and a brisk afternoon breeze dulled my desire to dive right in.

May 25 Saturday

A wonderful thing happened today.  My uncle (Mom’s oldest brother, who is 85) and cousin drove down from Las Vegas to pay their respects to Dad.  What a fine visit that was.  My uncle was a career military man, whose MOS was running nightclubs at US naval bases!  He’s quite the storyteller and Hubs was spellbound.  The topper was that my cousin (whom I’ve met only twice) was an ex-Marine Amtrakker (same as Hubs).  He was an Amtrak mechanic, used to ride quads, has loads in common with Hubs… This was a terrific discovery – not sure why we didn’t know this sooner.  I see much more socializing in the future, and trips to Vegas of course (not my favorite place, but there’s a big difference if you have family there).

Dad was very happy about the visit.  My uncle expressed his love and gratitude to Dad for taking care of his little sister, and apologized that all these years he “never knew how smart and accomplished” Dad was.  I think that might be true – I recall my Mom’s siblings always loving my Dad, but they used to give her a hard time about “the one who got away” – some guy she dated from the military academy.  Years later (like, 30 years) he rose to prominence and was always keen on her, but she never looked back.

It’s much more difficult to hear and understand Dad now.  His whispers have become slurred and extremely labored.  At times he appears asleep, but I think his eyes are merely half open.  His consumption is down to a few tablespoons of Boost or water, and his saliva seems to be building up in his throat and mouth.  He was experiencing great pain in his right shoulder, and would wince when I exerted any pressure on his collarbone.  Is it the tumor pressing on a nerve?  His shoulder was very hot to the touch, and he asked me to apply Vicks Vaporub on it, and cold washcloths.  He took a bit of liquid morphine, but it didn’t seem enough to relieve his pain.  All these changes in just one day.

I thought having this extra time with him was better for me, but trying to get used to the idea he’ll be gone is difficult.  I try to place it in context with my own impending death.  I may not know exactly when I’m going, but I’ve lived the past 7 years with an awareness that death has a way of sneaking up on us, especially when we think we’re not there yet.  I need to stop thinking I have more time… I need to get my family squared away – ASAP.

Sorrow and exhaustion has me firmly in its clutches.  I pray and count my blessings endlessly.

 

 

 

 

Welcome to your life, there’s no turning back

I took the long way to my parents’ home this morning, drove the route where I could see the mountains and washes laid out around me.  I found a radio station that played an eerily prescient mix of music that both exhilarated and made me cry, feeling how wonderful it was to hear music that one loved while driving fast, through scenery.  And I thought, this is part of what we think we’ll miss when we die.  It’s “feeling alive”, and those we love, obviously.  Which makes me think there’s a bit of skepticism that we’ll actually meet the people we lost in the afterlife.

“Stop apologizing for the things you’ve never done…”, The Jam, A Town Called Malice

I was rocking out and crying to songs from the ’80’s and ’90’s – top 40 hits, one might say, but whatever.  It was healing, that half hour drive.  I was deeply in the moment.  I think I’ll take another old road tomorrow, maybe through old orange groves lined with ancient palm trees.  Did I mention it’s 100 degrees F ?  Ridiculous, but I’m too beat to think about it right now.

A bit overwhelmed, but I think I’ve got the mortuary nailed down.  I need some quiet time to  sort things.  They’re not mine, so I feel relatively detached, unlike my damn health insurance bills.  I’ve finally faxed the medical records stuff off, and made another appointment at UCLA.  Perhaps it’s better to be busy.  Things sort of roll together –

The hospice home health aide is giving my dad a sponge bath.  He’s managed to get dad onto the hospital bed, which he’s refused to lie in for the last 5 days, so that’s a first.  My dad doesn’t want me anywhere near this activity, as already he’s had to face the indignity of being lifted onto the commode by his family.  I don’t know who he thought would be doing this service, but he’s so private it’s either us or strangers.  Perhaps he did believe he’d get better upon coming home, not deteriorate rapidly, as the palliative doctor stated.  I suppose all the aggressive interventions (thoracentesis, talc pleurodesis, chest tube) were too much for his poor body to take, on top of the chemo that beat him up yet failed to stabilize his disease.  In some moments I almost feel responsible for guiding him towards Gemzar and away from Taxotere.  This is where one can’t know – it’s a shot in the dark whether you’ll respond or be allergic or get beat up and still go downhill.  Gemzar is working for me again, but it did nothing for him, like lettuce.  (He always says, “Lettuce does nothing for you.”)

After the bath, he consented to wearing a hospital gown I brought.  I don’t know why I have these things.  I think I wore them as some sort of punk rock dress at one point, or maybe a Halloween costume.  The chaplain came along, a well-dressed, much-bejeweled Englishman.  My father was beaming after their conversation and the lengthy prayer said with the speed of an auctioneer.  I was pretty happy with that sequence of events, and dragged my aching, starving self home in the heat.

*****************************************************************

It’s almost midnight and 83 F.  The pool hit a whopping 85 degrees today, although I couldn’t enjoy it.  Gorgeous crescent moon out.  I’ve taken Ativan and ms contin and feel no effects, so I’ll make myself sleep.  Another long day tomorrow, hopefully cooler.

And now that I’ve completely lost my mind…

 

 

 

Hospice for Dad

Another harrowing week. It’s frightening, that I can’t remember things from one day to the next. I’ve been so stressed out I can’t sleep, or even cry.

My Dad comes home today, on hospice, against the advice of his palliative care physician. That doctor felt he needed to stay at least until he got over having pneumonia, but once again, my father refuses to stay in the hospital. Every time he has an issue and is admitted, he agitates to be released the next day. He spends all his energy fighting against being there, which would seem to prevent him from getting well, thereby lengthening his stay. But he wouldn’t stay another day longer, and has for the past week stated that he would die right away if he stayed there. We somehow managed to convince him to stay 4 more days, which allowed him to receive IV antibiotics, but he refuses to stay long enough to finish the course and be stabilized.

Last week he refused hospice, believing he could et better and continue cancer treatment. Yesterday he decided he would go on hospice if that’s what it took to go home. If he could be stabilized, he could come home on palliative care management, which offers more services than hospice. It assumes one is continuing treatment. Hospice, however, is purely comfort care – no interventional care is offered. The difference is, he could go home right away, in whatever condition he’s in. This is what he chose. Despite his doctor’s admonitions that he would decline rapidly at home, his response was that he wanted to go home to die. I think he felt his chances of improving in the hospital were slim because he was so miserable; that the chances at home were at least equal due to better food and familiar surroundings. It’s very much the mind-body thing at this point, and if he died due to lack of advanced intervention, at least he would be home.

As difficult as this decision is on my Mom, me, and Hubs, I can’t argue with the desire to die peacefully at home. It’s true that there were moments when we thought he might not make it, but dying in the hospital, while logistically better for the family, is horribly demoralizing for the individual. I, of all people, know this, so I stoically support my Dad’s wishes, while lamenting the burden this places on my Mom. I do feel that in the end she might be glad he came home and she could spend the last days with him. But she’s tired and beat-up from my brother’s and my Dad’s protracted illnesses and is anxious about her ability to care for him on her own, especially if he becomes distressed.

I have chemo this morning. Hubs is going to help Mom with the discharge process, etc. The hospital is far from her home and she no longer drives the freeways. Fortunately my friend Tara can accompany me to chemo. Afterwards I think I’ll have to consider staying at my folks’ house to help out. It’s difficult, not having additional support, but then there are those who have no one at all…

I hope I can stay well long enough to see my Mom through this phase and into a time when she is free of so much turmoil. She’s been such a trooper, I don’t know how she does it. I can’t think of anything worthy enough to give her for Mother’s Day — a new lease on life? All she wants is for everyone to be well, I know, but since I can’t give her that…

Poetry blitz

In a fog, waiting

When Death Comes

When death comes
like the hungry bear in autumn
when death comes and takes all the bright coins from his purse

to buy me, and snaps his purse shut;
when death comes
like the measle-pox;

when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering;
what is it going to be like, that cottage of darkness?

And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,

and I think of each life as a flower, as common
as a field daisy, and as singular,

and each name a comfortable music in the mouth
tending as all music does, toward silence,

and each body a lion of courage, and something
precious to the earth.

When it’s over, I want to say: all my life
I was a bride married to amazement.
I was a bridegroom, taking the world into my arms.

When it’s over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened
or full of argument.

I don’t want to end up simply having visited this world.

~ Mary Oliver ~

(from New and Selected Poems, Volume 1)

This is not a love song, or… whiny rambling post #405

Spring appears to be over, though I’m hopeful for a cooler day here and there.  I think today’s high is 94 F.  Hubs and I took a brief walk around 9:15 and the sun was merciless.  Since I’m not a morning person, any walking will have to take place after 7pm.  I see pool exercises in my future.

Tailbone still sore.  I can really feel it on an uphill climb.  I’ve lost a frightening amount of muscle tone just in the past 4 months.  It’s awful and scary to be so weak.  7 years of my diagnosis would seem like an excuse, but I see laziness and lack of motivation winning here, and it rankles me.  I tried in vain to get more sleep this morning, I’m feeling sleep deprived and low energy.  Alas, thinking of my entire life being a battle between doing/achieving and laziness/lack of motivation pushed me out of bed.

In high school I had a Hungarian friend whose father escaped the Hungarian Revolution and genocide.  He had harrowing tales of being shackled and marching with broken toes, the family he never saw again, and how the French Underground enabled him to reach America.  He worked for Radio Free Europe and was a freelance writer.  He didn’t mince words and bluntly said that in spite of how bright and talented I was,  I would never get anywhere because I was a dreamer… a nice way to say “Lazy and unmotivated”.  Later, my favorite teacher ever (Humanities – she was brilliant and wild to the bone) signed my yearbook with, “Please, save you from yourself.”  I shrugged that off, thinking I might figure it out someday, but I never really did.  If I got it, I ignored it.  Laziness wins!  Or more likely, airheadedness, inability to prioritize, and taking the easy way wins.  It makes me think this behavior hasn’t done my health any favors.

Over the years I’ve been tripped up by emotional ropes.  Unlike those who throw themselves into work, sport, or hobbies to channel that destructive energy, I’d wallow in misery.  I’d fall back on a safe path, moving back and forth from north to southern Cal, taking mundane government jobs in the process.  I had a few adventures with friends, true, but I never accomplished anything very meaningful in those years.  I just drifted along, going to music festivals, drinking quite a bit, and generally wasting time.  One could argue I was making the most of a simpler time, but one could also say I blew it – I could’ve done so many things without a care in the world.  If I could go to the Portland Microbrewery Festival every year, why couldn’t I go to Spain or Scotland or Japan?  Same thing, just a bit more costly, and isn’t that what credit cards are for?

It takes motivation and planning to mount an overseas trip.  Not too much of either, I’ve since found, but obviously I was an airhead and it was fine to drive to Berkeley every weekend and camp out on my brother’s couch (actually my couch in my brother’s flat).  We’d go to raves and scooter rallies and Mod events, eat Vietnamese food, read all night, listen to jazz and Northern Soul, drink more espresso than I can imagine.  When put that way, it doesn’t sound half-bad, actually. It  sounds like fun, which it was, in spades.  Okay, so maybe I did some cool things occasionally, but in between I was a government drone… stuck in my little life, writing out endless journals, like these.

So why am I berating myself now?  What’s the point?  I don’t know – lost opportunities, I guess.  Most of us aren’t destined to greatness, of course.  Well, greatness defined as success leading to money, influence, fame, the usual stuff.  Mothers might say they achieved greatness by raising their families.  Some will say they achieved it by touching the lives of many in need, etc.  I’m not a mother and I think I’ve only touched a few people’s lives… not in any sense I could relate to greatness, anyway.

Is it purpose I’m missing?  Is that what I’m looking for, a sense of purpose?  No, I think it has to do with that whole, “Those who are mad know the truth and aren’t afraid to say it” thing.  My brother slung some insults my way last time I saw him, and it sounded like his mental illness kicking in.  But on closer inspection, it’s somehow true.  When did I turn into such a wuss, or is that the curse of the middle child?  One could say my brother caved in to the pressure of parental expectation and went off the deep end — I often think that.  It was sort of an insidious thing;  all three of us essentially rebelled against it in our own way.  We resented being constantly taunted that certain careers were the only way to survive,  resented the lack of support (outright discouragement) for other endeavors.  There was quite a bit of negativity in those days, for reasons of disappointment, disillusion or whatever – but kids are impressionable in so many ways and it’s heartbreaking to have talent in all the fields your parents say will lead to inevitable starvation.  Imagine hearing that you’ll never succeed at anything in the arts, humanities, liberal arts, etc., that only a career in science will put food on the table.  Imagine being denied extra-curricular activities with, “Will (fill in activity name) get you a good job ?”  While most kids were being pushed to do as much as possible, we were discouraged from doing anything but study.  It was maddening.  Literally, in my brother’s case.

JK Rowling said in her Harvard commencement speech, “There’s an expiry date for blaming your parents for how you turned out.”  While that’s true, one is largely formed by their values and conditioning, and sometimes it’s hard to get away from the knee jerk reaction one develops to pressure.  I think mine has been to blow things off.  It seemed to me that after all that hard work and constantly staying on top of things, they didn’t seem to be having very much fun.  That’s not what I wanted and as many teenagers do, I made a mental note to go the opposite direction. That’s oversimplified of course, because I can now see all sorts of dynamics at play then.  But the damage is done – I’ve picked up some of their worst traits and added my own to the pile.  I’m indecisive AND unmotivated and scared.  I stress about money AND I procrastinate dealing with issues that have to do with large sums of it.  Rationally we all know to get the ugly stuff out of the way so we can all move on, but I can’t seem to do that with my own things.  It’s hard, and maybe my inability to deal with things right now has to do with not feeling very well, but when I do feel well, I still don’t deal… I’d rather put up an arbor for the climbing roses, for example, than figure out if my brother needs an LPS conservatorship.

Actually I’m dealing alright with my dad and brother’s situation.  I just can’t get the nerve to open the frighteningly tall stack of mail from the insurance companies/hospitals.  They’re bills, I just know it, for thousands of dollars.  The thought of opening them makes me want to throw up, then curl up in a ball and cry.  Hubs and older sister don’t offer to open the envelopes to see what they are.  No offer to help with any of it, or maybe with getting my medical records sent to UCLA.  Nope, they just push the pile off the dinner table so they can eat.  It’s maddening.

Maybe I should check myself in.

Before I do, a very big THANK YOU & MUCH LOVE to all who’ve left me kind words and support thus far.  It means the world to me, and I apologize for not replying to each comment individually right now.  Please know your thoughts are like rain in the parched desert of my soul these days.  May hope spring anew once more.