Friday, October 28, 2016

Life - My Dad

My dad passed Wednesday, October 19.

He'd been struggling for a while, and, now, finally, he's at peace.

Walking back in April.
I'm to the left, he's to the right.
Although he could walk on his own I didn't want him falling so I held his hand while walking.
We walked a little less than a mile in 21 minutes that day.

For those that don't know my dad has been at my house since the beginning of 2016. He's been unable to care for himself for a while so, after many years of one of my brothers looking after him, I accepted the "care baton". We had no idea how much time he had left. Initially I thought maybe a year, but that was just some random guess/feel thing. After a month or two, with my dad totally stable in his abilities, I thought that he could stay stable for years.

Of course that wasn't the case. Every month or so I'd notice a decline somewhere, and, cumulatively, it was more than he could bear.


I initiated hospice care the Saturday before which was October 15. I didn't really "start" it, it was really like "signing up" for it. Actual care really started on Tuesday when the first person showed up, and, I suppose, it really started Wednesday when his regular nurse arrived for her first, and, unexpectedly, her last visit.

For the uninitiated hospice care is basically "end of life" care. The expectation is that the family would initiate hospice care up to 6 months before death, with government coverage designed to handle at most 6 months of hospice.

The thing is that I didn't think he needed hospice just yet. Maybe a few weeks ago I got him up in the afternoon. Junior had just fallen asleep for his afternoon nap so it was a perfect time, I could pay attention to my dad and not worry about Junior getting tangled up in our feet or asking me about dinosaurs or whatever. I showered and dressed my dad then walked with him out of his room.

I meant to walk him to the kitchen table (the only eating table in the house) to feed him. Instead he veered off intentionally, heading directly to the steps leading upstairs. We'd gated the stairs off when he first moved here because he immediately started going up and down the stairs (with us spotting him). We were worried he'd fall down if he got up them on his own. Recently, though, we removed the gates since we always walked with him due to his somewhat unsteady walk.

That morning, at the first step of the ungated stairs, he paused and looked at me.

Then he looked up, lifted his foot, and started up the stairs with a purpose.

Although a bit wary I let him climb the stairs, one step at a time. If he wants to go up the stairs then he should go up the stairs. He wobbled a bit as expected but I never had to really support him, just spot him, and he made it up to the top of the stairs. Then he walked directly into Junior's room, walked around his bed (the bed has walls on three sides), and stood at the open side looking down at the napping Junior.

Junior's bed. The doorway is in the background, Bella is hanging out.
You can see how walking around the bed would give a better view of the bed.

After watching Junior sleep for maybe a "moment of silence" amount of time he turned and walked out the room, to the stop of the stairs. I quickly got past him at the top of the stairs to spot him from the front. Although this time I had to catch him a few times he made it down pretty well. Then, after visiting the front door and the kitchen he finally walked to his chair at the table and waited for me to help him sit down.

This didn't seem very "end of life" to me.

He did weaken significantly in the next couple weeks but still, this was something I remember pretty vividly.

We got this in late September.
We borrowed a wheelchair from a local medical closet and took my dad to the Big E.
We figured he'd like more trips like that.

Nonetheless we started talking about hospice, eventually resulting in me asking for a meeting with the hospice care providers for a meeting. I figured I should at least figure out what I need to do when he was closer to "end of life". That prompted the Saturday visit by a nurse. She did a preliminary assessment, declared him relatively fit but at the same time definitely meeting the criteria for hospice care. These include the person being not ambulatory on his own, not intaking much, not talking, losing significant weight, and being incontinent. My dad was all of them; at that point he weighed about 109 lbs, down from the 130 lbs in January, and his normal 160 lbs or so.

That Saturday, October 15, we made appointments for various people to visit the next week. The nurse wanted to have a health care aide 5-7 days a week. I initially declined because, you know, I can do all that stuff myself, but then we compromised and decided maybe 2-3 days would be good. The first visit from the aide would be Tuesday. As standard protocol the nurse had a counselor schedule a visit, as much for the family as for him. That was scheduled for Wednesday. Then of course his assigned nurse would come in, do a more detailed assessment, and bring me up to speed on what I'd need to do to care for my dad. After some negotiation we decided that the nurse would be at the house Wednesday as well.

Keep in mind that at this time I didn't think he really needed hospice care. I did know that things were changing, but to me it seemed hospice might be a few weeks away.

Once initiated the hospice program gets a lot of things rolling. Before hospice I was sort of struggling to learn things as it became necessary to learn them. It wasn't like I had to learn all sorts of complicated things, but it was still stuff that I'd discover the hard way, either asking my brother for tips, Googling things myself, or realizing I needed to do this or that otherwise my dad would do that or this. Although perhaps just one small thing at a time, it was a constant "learning and adjusting" thing.

In contrast, after hospice kicked in, I felt like I suddenly became part of a well oiled machine, all the parts humming along. Everyone had a task, they were good at it, and they took the newbie (me) in like I was a new teammate in a cohesive team. I learned a lot of little tricks in the two days hospice care people visited the house. Even the admitting nurse taught me some tips that Saturday.

A significant thing is that they knew the drill. They knew what to expect, what was normal. For me every change was sort of like "omg what do I do now?!" For them it was just another normal, expected thing.

My dad made it four days from that Saturday, one visit per person. I guess if nothing else my dad was super efficient. No wasted resources there. For anyone that knew him it was completely appropriate.


My dad and me, 2007.
I know, he must be so proud, right?
Photo by Matthew Wagner

My dad existed for his family, living his life as a duty to provide for his wife and his kids. By "provide" he felt the duty to support his wife until her death and support his kids until they were married. Apparently this was his definition of "leaving the nest". I was the last of the kids to get married, in 2007, and at that time he told us: "My wife is dead, my kids are married, I've fulfilled my duty, I am ready to die now."

That statement notwithstanding he cared for the earlier grandkids, the first of which arrived just a week and change after my mom passed. He helped out around the house as much as he could. But slowly, inexorably, he deteriorated.

In the end it's how he arranged his things that says a lot about how he and our mom raised us.

Before his facilities diminished too much my dad gave each of us four siblings equal and complete power of attorney over everything in his life. No checks or balances, just 100% outright power in each of the siblings. The lawyer writing all this up was pretty surprised at this, even questioning us to make sure that the law firm wasn't misunderstanding anything, or perhaps my dad wasn't aware of the implications.

He was.

This meant that any one of us could have, say, changed his will. Any one of us could have absconded with all of my dad's assets, legally, without telling anyone else. Even though none of us did that stuff, at the very least there might have been arguing about who should do what. Instead we all agreed on everything, together, without hesitation. To me this is a reflection of how our parents raised us, taught us.

A related thing is that we felt it necessary to look after our dad at one of our homes. This wasn't a specific wish of his, but it's something we felt necessary. We put some of our own lives aside in order to do this; one brother really took the brunt of it, and when he finally started cracking my other brother and myself both stepped up. Because of various logistical reasons we all decided that having my dad come to my house made the most sense. He moved in with us the last day of 2015, I think we finished getting him settled in a little before 11 PM on Dec 31st, New Year's Eve, 2015.

I can't begin to describe how much time, energy, and stress caring for an elderly person can put on a family. I've spoken to a lot of people who have gone through the same thing. It's not anything super intense, like say dealing with a fire or a flood, nor is it super complex, like neurosurgery, but it's just relentless. I can sort of relate to the never ending stream of, say, mail, and the whole "going postal" thing. The continuous demands of caring for a family member can be very draining psychologically, which affects you at every level.

It got to the point where, a couple months in, I was privately wondering if our marriage would survive, it was that bad. The stress ended up tempering my relationship with the Missus instead of breaking it, making it stronger, but like the initial stages of heat treating or welding, it didn't look very good for a while.

The End

Although we went through this end of life thing with my mom I seemed to have forgotten a lot of details in the 13 years that have passed. The hospice nurse explained to me some things, like if he was breathing a bit quicker it meant he was distressed. We'd treat him for discomfort (pain and anxiety) per his wishes.

The hospice nurse made her first visit on Wednesday, October 19. I had a weird night going into it, meaning on Tuesday, October 18. Normally I don't drink alcohol but for some reason I decided I needed a drink sort of late on Tuesday night. Usually when I have a drink it's because someone offers at a special occasion, but for me to initiate wanting a drink is pretty abnormal. Out of the blue, before I really realized what I was saying, I announced to the Missus that I wanted a drink. She was surprised but, perhaps, in some way, it wasn't too outlandish, given the situation. After all the whole year had just been one thing after another.

I got some tequila out to make a margarita. We keep the alcohol in a cabinet up high so I was standing on a stool to retrieve the bottle. I bent down and started pouring myself a bit into a cup below me on the counter. I couldn't tell how I'd poured because I was looking at the cup from above, not from the side. Also I'm no bartender so I don't instinctively stop at an ounce or whatever. The Missus watched me pour.

"That's a lot of tequila!" the Missus exclaimed.

I quickly stopped pouring.

When I climbed down I realized that I'd probably poured myself two shots worth of tequila. I put in a lot of mix, took a sip, and started coughing. The Missus couldn't help but giggle a bit. Although I didn't look up through my watering eyes and state through my coughs that "wow, that's pretty smooth", I think that's the only thing that was missing from the picture.

The Missus got me a couple ice cubes, I waited for it to dilute just a bit, then I drank it. It hit me like a ton of bricks and I went to sleep.

About 4 or 5 hours later I snapped awake. My first thought was the only reason I'd wake up like this was because of my dad so I hurried downstairs to check on him. He was breathing very heavily, normal cadence but it sounded labored. I wasn't sure what to do so I watched for a while, he seemed to be stable and asleep, so I headed back upstairs.

For me the operative term was "stable". "Stable" implies no changes so it's a good thing.

I woke up again and after some breakfast waited for the nurse. She arrived, watched him for all of, I don't know, 15 seconds, and started getting busy. She did all sorts of stuff, arranging him on the bed, raising and lowering bed stuff, asking for blankets and pillows and putting them here and there, and giving medication to clear my dad's mouth and make him feel less distressed. I noted what she did and basically my dad seemed a lot more comfortable. He was laying on his side, curled up like Junior taking a nap.

At some point she said that we were in the "days or weeks" time frame, not the "hours or minutes". That's one of those things you want to ask but you're not sure when it's appropriate. You don't want to blurt out, "So how long, nurse?", but at the same time you really want to get some kind of a time frame. It was good she mentioned it on her own. I figure it must be protocol.

Somewhere about that time I decided to call my siblings, I think while the nurse took care of some tasks like cleaning up my dad and such. My two brothers could drive from work immediately. One had probably 4 hours to get here, the other maybe 7. Unfortunately my sister couldn't make it that day because she had to fly across the country and that isn't a "right now" kind of thing - it would be tomorrow night before she could arrive.

A few hours into her visit his breathing was a bit fast, about 30 breaths per minute. Normal is a bit slower, 15-20 or so. We gave my dad some medicine but it generally takes a bit of time for it to kick in, especially since he stopped swallowing anything in the last day or so. For practice the nurse had me give him the last dosage of everything he'd gotten so I felt okay taking care of him. The nurse double checked that I was okay with the medicine procedure, I told her yes, we reviewed my tasks, and she left.

I checked my dad often. I remember being sick as a kid, laying in bed with a fever, and my mom and dad coming in to check on me. They'd wipe my forehead with a towel dipped in a water and rubbing alcohol solution, the alcohol evaporating quicker to cool me down better. I don't know if that was a known thing back in the day or if it was something my chemical engineer dad would have done.

We knew it was serious if they then had us take an aspirin, an orange flavored chewable, I think they were St John's or St Joseph's or something like that. After they finished with whatever they'd wrap me up, tucking in the blanket under our sides. My mom was a bit softer, the blanket wasn't as far underneath me, and of course it would loosen after a bit. My dad would tuck the blanket in more; when he tucked in the blanket you knew it. It felt like you were a snug little burrito. It'd still be snug when you woke up an hour or two later.

I didn't snug up the blanket around my dad but I made sure he was all covered. His torso felt really warm although his extremities were a bit less so. I made sure his face was clear so he could breathe okay.

I was expecting his breathing to slow down once the meds kicked in. Problem was that his breathing actually sped up. I called the nurse and reported that his breathing wasn't slowing at all and in fact it was up to about 60 breaths a minute, one a second. If you try breathing that fast (I tried it while I was counting) you'll realize that it's very, very fast for someone that's super weak and laying in bed. The nurse told me to give him the various "use in case of emergency" doses of medications as he was clearly distressed.

She also told me that my dad was deteriorating even quicker than she anticipated and were were now in the "minute and hours" range. This was a big change from the more relaxed "days and weeks" statement just a few hours before.

I hoped my brothers could make it here quickly.

I gave my dad the various medications (something to clear phlegm and two other things). I waited for a half hour, rolling his wheelchair up to the bed so I could sit in it while I watched him. His breathing didn't change much at all. At some point I went and moved one of the cars out of the driveway so one of my brothers could park next to the house - he'd be arriving shortly, like in 45 minutes; the other I expected in a few hours.

When I came back in my dad was breathing extremely slowly, like a breath every 10 to 15 seconds. I called the nurse again. At her request I timed his breathing. Three breaths in 32 seconds, 5 or 6 breaths a minute. Obviously this was a significant change from panting at 60 breaths a minute. After a brief discussion she let me go after making me promise to call her as things changed. Now that I know a bit more I have a feeling that she knew what was happening and she wanted me to be present with my dad for his last minutes here, not be talking on the phone.

I hit the Off button on the home phone. I sat there in the wheelchair, next to my dad on the hospital bed. I had my stopwatch (an app on my smartphone) in my right hand, the home phone in the left. I was counting breaths, which, at that point, was more like counting how many seconds between breaths.

I reset the stopwatch and waited for him to take a breath.

He took a breath so I hit the start button. The timer started racing along, counting off the seconds until the next breath. In a bike race, when I'm timing a break's gap, time crawls by so slowly. I figure the break has to have 20 seconds and it's really 12. Here it raced by; I was hoping for 10 seconds and it was already, whatever, 15 seconds.

My dad looked as comfortable as he could be, curled up in bed, wrapped in a blanket. His hands were up across his chest and neck, his legs bent a bit and his knees up a bit. His eyes were mostly closed so he looked completely at ease, curled up like maybe Junior when Junior's asleep.

I resisted the temptation to tuck in the blankets firmly around him.

My dad took a breath, a big one.

I glanced down. The stopwatch showed 32 seconds. 32 seconds. That was a long interval. I let the stopwatch run. My mind wasn't really processing things. I wanted to make sure I didn't miss the time when he took his next breath. Otherwise there were no changes, no movements or anything.

Stable is good, right?

At some point, out of the corner of my eye, I saw 32 flash by again. By the time I focused on the stopwatch it showed 1:35, a minute 35, numbers racing by even as the 32 registered in my head.

It meant that over a minute had passed and my dad hadn't taken a breath.

That got my attention.

I looked closer at him. He didn't look any different, still curled up like he was taking a nap. I got up and crouched over him. His fingertips were cool, but they were before. His toes were cool, but they were before. His head was cool up top, warmer toward his chin, like before. His chest was warm.

Like before. That was stable, right?

I held his wrist.

I thought to myself that I hadn't taken his pulse recently so I wasn't sure how it would feel. I couldn't feel anything but I was starting to get a bit agitated and I couldn't calm myself down to feel for a feeble pulse. I checked his neck for a pulse also, but, again, I wasn't able to do it. I didn't know what his heart rate was when the nurse checked in the morning so I had no point of reference. I did notice one thing.

His chest wasn't moving at all.

At some point, I don't know when but I think after about 2 minutes, I realized that he still hadn't taken a breath.

I straightened up.

I walked out of the room and down the hallway, the one my dad walked through over and over just a few months ago when he'd do laps around the first floor of the house. I remember it was a bit dim, I don't know if the light was on or not, or maybe I wasn't seeing quite right.

The Missus was standing there.

"I think my dad just died."


We had a very simple gathering for him. We knew he wouldn't want anything for himself but I think it was for all of us to pay our respects to him. I think of it now and it felt like a celebration of his life, which was perfect.

As a bonus we learned all sorts of stuff about him. It's unfortunate that the stories come out after the fact, but, still, now at least we can enjoy them. I learned a lot about his professional career, just how significant it was to those of us in the modern world. I am thinking about putting something together something on that for later, but I'm not sure what I feel comfortable posting. We'll see.

I also got to see him as more of a peer, at least in the grand scheme of things. To me my dad was always "my dad". We called him Daddy, even now; my updates to my siblings were titled "Daddy update". To me he was one of the two adults of the family and I was always one of the kids. But to his peers he was a peer. He was the guy they met when he got hit by a car and declined getting x-rays because he was "fine", or the guy that taught them how to be the best engineer possible, or the guy that unexpectedly cracked jokes at work, or whatever.

As my mom deteriorated back in 2003 she realized that the Nutmeg State Games were coming up. She asked me if I was going to go defend my fortuitous 2002 Nutmeg State Games gold medal. I told her no, I'd do that "after". I also told her I'd win the Bethel Spring Series for her. She knew what I meant by "after" and she was okay with it. I didn't tell anyone else about my promises because, really, how could I possibly tell someone I was going to accomplish those two things? Plus, at the time, I weighed something like 210 pounds, and, yeah, I could barely ride a bike. In fact I had to size up because I couldn't pedal the bike without kneeing myself in the gut.

Nevertheless, after some intense races (and losing a lot of weight), in 2005 I won the Series in a super tight finish. In 2006 I got the Gold at Nutmeg State Games.

2005 Bethel Spring Series

I didn't commit myself this time to doing anything, even privately. The end came so quickly I ended up wrapped up in the details of things instead of thinking of bigger broader. Whatever I do, though, I hope to do honor by my dad.


ddesmonts said...

I think you've already honored him, Aki.
So sorry for your loss. Reading the post rushed memories back to my mind when I sat by my dad as he passed at home. The breathing was very similar. I remember maybe the day or two before trying to match his shallow breathing and I could not do it for more than about 5 breaths. I need more air - how was he geting enough? I felt a large sense of relief at his death as the person fading away the few weeks prior was not the man I remembered. He left us on 10/21/16 and if I let myself think about him being gone for more than several seconds I feel the tears start. Just like right now. Life is nuts. Death is nuts and the whole thing confounds me.

brownja said...


I'm very sorry for your loss.
I never had the pleasure of meeting your father, but you're a good man, so he must have been alright.

Matt Stuart said...

What a touching tribute. What a great kid you are. Any parent would be proud. You all did the right thing for an honorable man, as difficult as that was for your whole family. We should all be lucky enough to pass that peacefully, with our caring family nearby.
our condolences to you and your family.

fastk9dad said...

I'm sorry for your loss. You're dad sounds like a wonderful person and he certainly raised a great family. As the other poster said you have already honored him.

EeyoreSchmeeyore said...

I don't know you. Though from reading your story, perhaps I do. A little. Your father was fortunate to have such a great friend by his side.

Anonymous said...

You're a good son, Aki.

Aki said...

Thanks everyone. Dom I didn't know your dad passed only a couple days after mine. Like you said it's totally nutty, so intense and so permanent. John, I always remember you because my dad worked for a company with your first and last name and in fact because of them he got an unexpected pension check (UK companies apparently have to pay a pension to all past employees, no matter how briefly they were employed). Plus how could I forget selling you a 12T cog at the shop and then you riding me off your wheel either that night or a night shortly after at SUNY Purchase using "my" cog. I tell that story to everyone.