Home Coming

After a month of rigorous rehab, Dad is finally deemed well enough to travel. It’s time for us to go home. For me, that means returning to my apartment and life in Newport Beach, CA. While I have been trained in “proper transfer technique”, I am nervous about transferring Dad in and out of his wheelchair and the taxi, not to mention how I am going to manage the airport and the plane.

This is the first time either of us has flown first class. Unfortunately, it is out of necessity – his wheelchair will not fit in the narrow economy aisle and it would be impossible to transfer him to a seat there.

I wheel Dad onto the plane and pause for a moment as I try to figure out the best transfer strategy. A magnificent, muscular mountain of a Hawaiian man appears out of nowhere like a genie and asks me if he can help. I look up (and up) and gratefully nod, “Thank you.” He instructs me, “Take your father’s feet.” I’m not sure what he has in mind-this isn’t what they taught me, but I do as I am told. From behind, the gentle giant puts his hands under Dad’s armpits and asks him if he is ready. Dad nods. In one smooth, easy motion, the man lifts him up and over the wheelchair and the top of the seat and sets him down as if he were just a feather pillow. Dad is 6’ 2” and used to be 200lbs. He’s lost a bit of weight these past few months… Before I can thank the man again, he’s vanished. I turn to Dad and start fastening his seat beat for him, “Big guy,” I say, Dad nods, his eyes wide.

As we prepare for takeoff, I shut my eyes and think about when I was a child  and I thought of him as the strongest man of all.

We had our own language and counting system based on my toddler misspeaks. Counting went one, two, three, eleventy-seven. We used to count together one, two, three, “upadad” and he’d lift me high up above his head then set me on his shoulders. With the sun on my face, my hands clasped on his forehead and my heels tapping against his chest, I couldn’t have been happier. Remembering how he used to push me on the swing.  I’d be soaring so high with my feet waving at the tree tops. And the adventures we had like the time we forged our way down the Connecticut River on “dadmade” rafts of air mattresses and wood – one, two, three, row .

Dad has not recovered his swallow reflex so he will not be able to partake in the complimentary first class beverages and meal service. He insists that I eat. I have no appetite. All I can think about is how much my father loves to eat and how he’s been deprived of this simple pleasure for 3 months. He commands me in his typical 1 word directive, “Eat.” Sitting beside him, I obediently and mechanically bring the fork to my mouth, swallowing hard and washing a few  mouthfuls down with water.

We land in LAX where my brother and mother (she’s has flown in from the East Coast for Thanksgiving) meet me. I explain the transfer and diapering process to my brother and let him take my father to the bathroom when we arrive. He spent some time in high school working as an orderly so I figure it won’t be too difficult for him. It still feels awkward to me. Next stop is a rehab hospital in Long Beach.  Dad went completely without food or water while we traveled. Suffice to say that it was a very long and challenging day. When we arrive at the rehab facility that evening, I brief his care team and set about the task of settling my father into his new room. My brother and mother wait in the background as I finish unpacking Dad’s things and decorating the room. While Dad naps, they tell me they are going to Palm Springs for the holiday weekend and ask If I’d like to join them. I decline. I can’t imagine just dropping Dad in this new hospital and leaving him— even though it’s only a few days. Besides, after 3 months of unplanned life hiatus, I’m eager to get home myself.

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Yes, you can!

6

Most mornings on the drive to the hospital, I stop along the roadside to cut some flowers for Dad. There’s an endless variety of exotic colors, shapes and scents. Dad has always been one to stop and smell the flowers so I bring them over to his bedside first to give him a sniff of the fragrant plumeria or ginger. He inhales and nods in appreciation. We’ve established a morning ritual. First, I  hand Dad a warm washcloth so he can wash his face.  Next, I partially fill a cup with warm water, put toothpaste (not too much) on his toothbrush and hand it to him.  He brushes his teeth and spits into the pink spittoon I hold under his chin. We do that three times and then I use the washcloth to catch any drool. Finally, I hand him his electric razor and he makes clean tracks across his face. There’s an area on his left side and neck that’s a bit overgrown. He hands the razor back to me and gestures to that area. I’m awkward with the razor, I never seem to get it all. We perform in silence.

Dad doesn’t say much these days, but that’s nothing new, he has always been a man of few words. When he does speak, his voice is slightly garbled like he is talking underwater. There are no conversations, just two or three word directives, “Cover my feet”, (with his 6 foot 2” frame, Dad’s feet are constantly coming uncovered), or “Warm blanket”, (the one amenity of this hospital), or “Suction.” I have to call the nurse for suction, looking away as she threads a plastic tube up his nose and down his throat past his gag reflex to suck up the salvia and mucous. Dad gags and his face twists with discomfort. His sounds, the gurgle and the grey green fluids rising in the jar against the wall nearly get me gagging.

Today, a doctor arrives to give Dad a tracheotomy. With a tracheotomy they can better manage his mucous and saliva – bypass sticking a tube through his nose for a more direct route through his throat. I watch from the door. While the doctor is cutting a hole in my father’s throat (without anesthesia – just topical), I see Dad’s left arm and left leg move. I can tell they are not reflex motions like those from a yawn or a cough.  I recognize them as pain protest movements reminiscent of what I do in the dental chair at points of high discomfort. I barge in as soon as the doctor is through, “Dad, you can move your left arm and your leg, I just saw you do it.” “No, I can’t,” he says. “Yes, you can,” I insist, racing out the door to share the good news with his physical therapist. I can’t find her. The next day, I see Dad moving his left arm and left leg in his sleep – intentional readjustments. When he wakes  up, I tell him what I saw, again he denies that he can move his left arm or leg. This time, I’m able to find his physical therapist. When she comes in, she sits by the bed and holds his arm in a conducive position.  She asks Dad to bring his hand towards his body― his forearm moves ever so slightly.  (In sleep, he is uninhibited by his “I can’t” thoughts.) “See Dad,” I exclaimed thrilled to contradict him on this, “Yes, you can!”

Journal Entries October -November ’99

10.5.99

Dad moved out of ICU and back into his original cardiac care room.  He goes in today for surgery for a PEG feeding tube through his stomach.

10.10.99

That’s the date on the sputum canister that is filled to the top with a murky grey froth…Today, he breathes without congestion. The man of so few words has been reduced to none by the tracheotomy. His pale, blue/gray blinking eyes do all the talking for him.

10.15.99

I watch Dad’s face as he watches the nurse feed chalky liquid through his stomach tube. Despair. He has been without real food or drink for 34 days. It all feels like too much to bear.  It’s so hard to see him this way—unable to roll over in bed without help, to keep from drooling when sitting up. What prepares us for this?

10.19.99

Tried to give blood today at the blood bank outside the hospital. Halfway through my blood clotted and stop flowing. Have a meeting at 1:30 with Dad’s doctors. Prognosis poor – they say we’re looking at long-term care. We need to talk about living will and power of attorney.  The social worker is going to initiate the conversation – phew.

10.21.99

Yesterday was a bad day. We had Mom do us a favor and drive over to Dad’s house to turn the furnace on to keep the pipes from freezing. She turned the one without the vent on, which could cause an explosion. So I’ve got Mom on the phone yelling at me and Dad in the hospital bed going into conniptions.  Day 40 and I’m not sure how long I can keep holding things together. Just got a message from a friend whom I haven’t heard from since this whole thing started, calling to “See how it’s going”…

10.22.99

Dad moved his left leg several times! He will come out of this and walk again. And if he walks again he may get his life back. He’ll prove those doctors wrong.

10.25.99

Dad was bright eyed and cooperative this morning. The antidepressant must be helping. Surprised that he agreed to it. I’m feeling very unproductive. Went for my break at the beach. Didn’t  run, didn’t swim, didn’t read, didn’t write, didn’t sleep. Back at the hospital now.

10.26.99

Dad startled me today. I had my back to him and was writing him a note that I came by again since he had fallen asleep.  “Aren’t you cold?” he asked, his voice strong and husky. This is the best his voice has sounded and the first time he initiated conversation or asked about me.

10.30.99

Dad looked good this morning, then threw up and wasn’t doing so well. It’s like New England weather—unpredictable and mostly unpleasant.  One day, I think we are on the road to recovery, the next, it looks like we still might lose him. 50 days in the hospital. I can’t believe my best friend hasn’t called all this time…I asked Greg to start looking into facilities for Dad in CA…

11.1.99

Dad can move his left arm! I saw him moving it in his sleep – not reflex moves, but intentional readjustments. When I asked him, he said he couldn’t.  Now the PT confirmed it- she held his arm in a conducive position and he moved it ever so slightly. (In sleep, he is uninhibited by his thoughts.) He was off oxygen all day today too.

11.2.99

Before I left last night, Dad asked me to read Mom’s cards to him again. He said he wanted to know what she was thinking of him. It hit me – could he still be in love with her after all these years?

Been bugging Greg to come back…He said MAYBE he will make it out in a week.

11.4.99

Life changes tomorrow. Dad goes to a rehab hospital in Honolulu. It will be a different commute for me. Dad said something on the phone to Greg about how I am the only one who knows how to take care of him. I can only imagine what he’s thinking…

11.5.11

They think Dad will be able to partially walk with a cane and personal assistance. They say it’s where the person is at the six month point that is telling as to how much they’ll recover…Dad’s spirits are up. He’s telling jokes and I’ve actually seen him laughing.

11.6.99

Dad had a cognitive evaluation the other day. He read a paragraph from the newspaper and then summed up what he had read.  He did fine.  In the hospital he had me read his Calvin & Hobbes to him because he said the print was too small…not so apparently… At least I was doing something for him that he wanted. Perhaps he knew I would be better doing something. There seem to be deficits here and there – he spelled his last name with 3 b’s and wrote 11K instead of 1k. The therapist did not seem alarmed, just said Dad would need to work on attention to detail. I’ve been handling all his bills anyway. He is starting to talk more and more spontaneously with the speech device in the trach—rarely resorting to the clipboard. Hopefully he will kick the infection and pneumonia soon…

11.7.99

Dad was in a bad mood. They keep putting diapers on him. It’s more convenient for the nurses. I don’t care. He is not incontinent—just needs help to the toilet. Also, I noticed that there is no consistency with how the aids put him back in bed and they do not encourage him to help. I thought this was rehab?! Will talk to them.

11.12.99

I’m exhausted. I think it’s going to be a while before I feel like myself again.

Need to talk to discharge planner about dates so we can lineup the facility and flights. If only his ability to swallow would come back in time for Thanksgiving—that would be something to be thankful for. Need to make phone calls and figure out Dad’s insurance details. Need to figure out what I am going to do for work when I get home.

11.15.99

Took my friend’s dogs for a hike. Made phone calls to sort out the insurance mess.

11. 16.99

I have a headache. Spent most the day with Dad. He surprised me by saying “Thanks for coming. It was great.”

11.23.11

So the day has finally come. I’m going home and Dad’s coming with me. The other day he gave a direct blue-eyed gaze and quietly asked, “Will you come live with me?” Ugh. Part of me wants to do anything to make him feel better, but …I evaded the question the best I could. That would certainly be the end of life as I know it. At 35, I feel as if I haven’t even had a chance to really live myself.

I’m a little concerned about the flight for Dad. He hasn’t been doing so well these last 2 days. He pulled his trach out the other night because he couldn’t breathe. He could have ended up back in ICU or worse.

“The Nurses Like It.”

5

Amazingly, Dad is now awake and alert.

I walk in and there’s some drama on his tv—the surgeon turns away, zoom in to the flat blue line on the vitals monitor, quick cut to the hysterical family in the waiting room. It hits me much too close to home. I can’t help but blurt out, “Geez Dad, haven’t you had enough of this hospital stuff?” He moves two fingers of his working hand together and across the empty space in front of him. I place the pen in his fingers and hold the clipboard steady. We haven’t communicated since his stroke, a month ago. I hold my breath as he writes one shaky letter after another until the crooked words descend the page, “The nurses like it.”

A week later Dad’s condition is upgraded and he is moved out of ICU to the telemetry floor. This time, the view is of the rooftop and air conditioning ducts, which is actually more intrinsically interesting to him because of his HVAC business… In any case, we are both happy to sacrifice the view for a better overall outlook.

The uphill struggle begins. Dad is paralyzed on his left side and has lost his ability to swallow—dysphagia. They’ve already put in a g-tube in his stomach to feed him. We believe this is a drastic, hopefully temporary measure, until he recovers…

“This could be your last 2 weeks with your Dad.”

4

“This could be your last 2 weeks with your Dad.”

My father’s ICU room at Castle Medical Center in Kailua, Oahu had the most amazing view. (A view most patients never saw.) I would stand there looking out the window and describe the lush green mountain with the steep red mud red trail slicing through it. I’d talk about how I wanted to hike up there and wave to him from the top like I used to on our Sunday hikes―running ahead just to turn around and see him smiling and waving back. Whether he could hear me or not, I’d give him my daily report on the pasture below and how the white mare, black colt and chestnut filly were grazing or frolicking. Sometimes the pasture was empty and no words came to me. I’d just sit watching for a sign of consciousness, my breath syncopating with the rhythm and hiss of his assisted respiration.

Well meaning friends offered “helpful” tidbits: “It’s over once they stop opening their eyes.” Dad’s eyes opened rarely and then only to scatter around the room like the crystal marbles with blue swirls he gave us as kids. When the nurse pulls me aside to say, “Honey, this could be your last two weeks with your Dad,” I relayed the message to my brother, Greg, and Dad’s sister.

My Dad had a soft spot for cats having adopted a scraggly wet stray on a rainy night in Springfield, MA. My friends whose guest house I was staying in had just rescued a silver tabby kitten with a broken leg. The cast seemed larger than its body. When I told the nurse my idea, she said she would look the other way… Dad opens his eyes and seemed to respond to the kitten.  Shortly after, his sister and favorite niece arrived.

Castle Medical Center, Kailua, Oahu

Journal Entries  9.18.99-9/26/99

9.18.99

Three days ago we got permission to wheel Dad out to the front of the hospital so he could see the mountain views and smell the sweet, soft Hawaiian air.  He was asking questions about getting home.

Two days ago, he had a “pulmonary incident”. In 7 days, we have gone from “potentially fatal” to “making good progress” and back to “critical” and “reason for concern.” Even at the ‘high” point, it was bleak—left-side paralysis, including his ability to swallow. “Tube feeding is necessary for an indefinite duration…”

One day taking a dip in the tropical Hawaiian water on the first day of our family vacation; the next day, incapacitated. Yes alive, but…

Dad never really lived. He worked hard and was very frugal. He had only recently (on our insistence) started to take annual vacations to visit us in California.

They said they would remove the breathing tube today and haven’t…

9.22.99

Serious blood infection (sepsis) now and pneumonia. His stomach function is impaired. They took the breathing tube out, but with his fever now, he has to wear an oxygen mask. I cut his nails today. Strange and difficult to cut someone else’s nails. Dad has always kept them clean and very short. They had grown long in this short time. Greg went home today.

The nurses move Dad every 2 hours to prevent bedsores.  They check his BP, respiration and O2 saturation readings, take his blood sugar and empty his urine bag. There’s a feeding tube through his nose.

9.24.99

More fever and a new highly contagious infection, MRSA. Visitors must wear masks and gloves. He was shaking with chill tremors. I feel helpless. It makes me claustrophobic to wear the mask and gloves.  I have a sense of how Dad must feel with the O2 mask on all the time.

They are talking about a tracheotomy… When he was first in this same room in ICU, I had described the pasture and the horses below to him each day. Today he said, “Greg told me about the horses out there.”  Actually, that was me, Dad…

9.25.99

There’s one tube for feeding/ intake and two for outtake now.  Dad has had several “bad” days in a row. We are, as they keep saying, “Taking one day at a time.” At night it seems as if I can almost map the drive from the hospital to the guesthouse by the smells –intensified in the darkness.  First the sewage treatment plant, then into the fecund native scents — fruits (mountain apple), flowers (plumeria, ginger), the ever verdant rain forest, pungent brown clay earth, the salty fish ocean smell— life rotting and thriving at once.

9.26.99

Nurse Kimi pulled me aside today to tell me, “Honey,  this could be your last  2 weeks with your Dad.” I read Dad the comics this morning. It was hard to keep from crying. Called Greg and Dad’s sister and relayed what Nurse Kimi had told me.

Important Papers

3

Important Papers

[Flashback]

The brown briefcase was well worn and had a lock on it. Whenever Dad would visit me in California, he would ask to put the briefcase in a safe place. “Dad,” I would reply, “the house is safe. I keep the doors locked.” Adding “What have you got in there anyway, Dad, gold bullion?” He would mutter something back about “important papers”, shake his head at me and seek out a special hiding place for it–behind the couch, in the cabinet under the kitchen sink. Living in Newport Beach, CA made it was easy for me to forget the crime ridden south side of Springfield, MA where my father lived and had been burglarized a dozen times. Just the previous year, Dad had been in the kitchen preparing dinner when he heard a noise in the living room. He peered around the door and saw a hand poking through the broken window trying to raise it. He grabbed the phone and dialed 911 and reported that someone was breaking into his house. The operator tried to keep him on the line, always polite, my father said, “I’m sorry I have to hang up now, the burglar is in my house.” He hung up the phone, grabbed a butcher knife and, at the age of 72, chased the young punk out of his house, through the yard, and into the arms of the police who had just arrived.

It was strange to be unlocking Dad’s briefcase, even with his permission, but bills had to be paid and that’s where his checkbook was. I found it buried under old bank, brokerage and mortgage statements. Mixed in with these were stacks of letters carefully rubber-banded together. Even though I’d found the checkbook, my curiosity got the better of me. I lifted a stack of letters and quickly looked at the writing on the envelopes, vaguely recognizing my own sloppy handwriting—these were letters I had written him from teenage years in boarding school to college in Virginia and adulthood California.