Thank you and Good Night

 

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One of our motorcycle rides to Rabbit Hash, KY

It’s been 14 months since my father died and I am still coming to terms with the fact that he is actually gone.

Last April, on my father’s birthday, he was diagnosed with Stage IV pancreatic cancer. It had already spread to his liver, stomach, lungs, and omentum. He had complained of abdominal pain for months prior to his diagnosis and had asked his doctor for a CT scan, but the doctor insisted on other tests first. My mom called me after they’d gone out to dinner for Dad’s birthday. He barely ate anything when his stomach began to bother him.
I told her, “Take him to the ER. I know they will do a CT.”

After waiting several hours, I got the call at 2am from the obviously distraught ER doctor who told me what the CT showed. I thanked her for calling. As I hung up in tears I said to Monica, “My dad is going to die.”

I went to Cincinnati a few weeks later and went with my parents to see the oncologist who wanted to put Dad on a clinical trial. Figuring he had little to lose, he agreed to pursue it. He had high hopes for the study. At the time, I don’t think he was understanding how ill he was. When the nurse explained to him that any treatment would be palliative, he looked at me for explanation. “Does that mean I can eat it?” he mused.

A few days later he checked into the hospital to have his port placed. He told the nurse there that he would be back to have it removed when he got well. The nurse gave me a knowing glance, but she simply told Dad that she would look forward to that.

Dad’s prognosis was difficult for us to accept because we always believed Dad would live to be 100. He had always told us that and it was never questioned.
Most people look up to their fathers. I think that is natural, but we thought our father was extraordinary. Superhuman even. He could literally do anything he put his mind toward. If he wanted to pursue something, he did so with obsessive enthusiasm. He wanted the best and he worked nearly every single day of his life to obtain the things he wanted.

400951_4201785737411_457125957_nHe didn’t wear a suit and sit behind a mahogany desk to earn a living. He worked hard physical labor from dawn til dusk and came home covered in blood and sawdust every day. He designed and built over 100 custom homes, remodeled countless houses and could definitely make a silk purse from a sow’s ear. Dad could fix anything. He also had a habit of taking things apart to see how they worked and he had a unique eye for detail. This trait was particularly annoying at Christmas when he’d dissect our toys before we had a chance to play with them.

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Dad pursued his hobbies as zealously as he did his work. Dancing, ballooning, traveling, and motorcycling were his favorites. He wanted the biggest and the best. He wanted to BE the biggest and the best in everything he undertook. Never, in my life, did I hear Dad say, “I can’t.”

 

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Dad (left) with his brother, David

Dad grew up in the Ohio Appalachian country, one of ten children. He was a classic middle child, a risk-taker and willing to try new things. At thirteen, he survived a coma after a nearly deadly attack of yellow jackets he sustained while chasing down a pig. He actually felt superhuman much of the time.

From an early age, he made strides to improve his life. When he was a teenager he won clothes by dancing on American Bandstand. He installed plumbing into his family home after they’d pumped water from a well and used an outhouse for so long. His life was dedicated to improving and creating things constantly.

 

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The motorcycle that Dad taught me to ride
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My first swing. It was very high.

He loved to have fun and he taught and showed us so many things. He built us swings and a treehouse. He pulled us around in a wagon behind the lawnmower. He climbed trees with us and took us canoeing. He taught us how to ride a bicycle and then a motorcycle. I learned to drive a car by chasing a hot air balloon all over the Ohio valley. The first day I got my temporary permit, Dad took me out to drive…at night…in the rain…on the interstate where I learned to cross 3 lanes of traffic. (Mom, however, gets credit for teaching me how to drive a standard shift: stop on a steep hill and get out of first gear without rolling back into the Ohio river) I now think my parents’ strategy for life lessons was either to succeed or die.

Dad was a brilliant ball of fire, but, truthfully, he was also a narcissist. I’m not saying this to be spiteful. It’s simply reality. Anyone who really knew him would know this about him. It’s really what drove him to be the person he was. He was a perfectionist in every way. Did anyone wonder why he didn’t have a crew working with him? No one could do anything as well as he wanted.

All my life, I felt that I was a disappointment to him. I wasn’t a beauty queen. Or a doctor. I didn’t marry a man and have grandchildren. It took me a long time to come to terms with the fact that I would never live up to his expectations and that I had to live my life for myself.

I believe my siblings felt this from him as well, but they’ll have to tell you their own story.

After Dad’s chemotherapy started, he began a rapid downward spiral and abandoned all treatment. The vomiting started and never let up. When I flew home in June he was horribly sick at the inpatient hospice. He told me he wanted to die. I asked him if he wanted to die at home and he told me he did. Getting him home would be a challenge as he was incredibly weak and any movement aggravated his nausea. He agreed to go home as long as he could be in his room and not bothered by anyone.

Often he would ask me how long it would take to die without eating. I told him, “You can live three minutes without oxygen, three days without water, and three weeks without food.”

He nodded his head and quietly repeated, “Three, three, three.” Then he looked up at me with sunken eyes and said, “I’ll take the three minutes.”

Every step of the way home was a challenge. I had to drive slowly and gingerly. He was reluctant to get out of the car when we arrived home. It was like bringing home a stray cat. Then we had the challenge of getting him up the stairs to his room where hospice had set up a hospital bed. I corralled my cousin, Chad, into helping us, a decision I regretted when I realized how distressed he was to see his uncle diminished to a weak fragile shell of what he had once been.

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“So is this it? Is this as good as it’s going to get?”

Dad seemed more content once he settled into the bed and could look out the window in his own home. We gave him morphine around the clock which kept him comfortable, but the nausea and vomiting were persistent in spite of every effort. Nothing tasted right to him. We were at Kroger’s several times a day in an attempt to find one thing that was palatable for him. He’d try something, then have violent vomiting. For the last six weeks of his life, he subsisted on ice chips and watermelon.

In the middle of the night, he would develop raging fevers and become delirious. We’d give him tylenol suppositories and saturate him with cold washcloths, wringing them out and cooling them down over and over until his fever broke. One night, when he gained his senses again as I was placing cold cloths on his head, he said to me, “Is this quality time?”
“Yes,” I choked. “This is quality time.”

He often watched the TV show “Naked and Afraid.” The premise was that a man and a woman were paired up and left in a jungle naked to try to survive for 21 days. One night, Mom and I were awakened by Dad’s voice coming from the darkness, saying, “Maybe that’s why they only let them go for three weeks on that show. In case they don’t eat.  Three, three, three.”

“I never thought of that before,” I said. “You’re probably right. Call the show, tell them you’ve been playing at home and that you’ve won.”

He would wake up in the mornings and ask us, “Is today the day the miracle happens? Everyone keeps talking about a miracle. I’m beginning to doubt it.”

Everyone keeps telling me I’m going to get a miracle.” At other times, he’d break into a song. One of his favorites to sing was “Fly Me to the Moon.” He was ready to fly to the moon, or anywhere for that matter, he told us.

At one point, Dad misunderstood my role in taking care of him. He thought I was there to euthanize him. He sat on the edge of the bed, his head hanging down after another bout of vomiting. He arduously lifted his head to look at me and asked, “Don’t you give me all the morphine now?”

He often asked, “Why can’t I die?” or “When will I know?”

We told him someone would come to get him, maybe his brother, David, or his mother. We told him if they came that it was ok if he went with them.

We wanted to make sure he got everything in order so he was be able to go in peace.

Bobi: Is there anyone you want to see or need to talk to?”

Dad: “Yeah, the roofer.” 

Me: “Oh, good god, what did you do to the roofer??”

Some days he would feel better and would want to try something to eat or would want to take a bath. Sean would help him into the tub and get him clean. At one point he ran out of his Old Spice deodorant and I went to the store to get some more. When I returned I gave Dad the package that contained 2 sticks of deodorant, the only way they were sold for some reason. “Oh,” Dad said, “You got me a lifetime’s supply.”

After about a week, we persuaded Dad to go downstairs. We’d gotten a wheelchair and told him we’d take him outside. There was no way he could walk down the stairs. We tried to come up with ways to get him down the steep flight of stairs. Then we thought we could get him down, but would never get him up. We decided when it was time to take him back to bed, we’d lay him on the floor, call the fire department and tell them Dad fell out of bed. It was convincing them that he fell out of bed, rolled down the stairs and into the living room and would they be so kind as to carry him back up the stairs and place him back into his bed.

In reality, the kindness of the Pierce Township Fire Department, is what got him down the stairs. Firefighters came to the house with a stair chair stretcher and carried him down. They told us to call them back when Dad was ready to go back to bed.

He never went back upstairs. We moved his bed into the living room and set up a baby monitor next to his bed so we could hear him if we were upstairs. By this time, my brother and sister had basically moved into the house and together we gave him around-the-clock care.

He started to get a small pressure ulcer on his coccyx so I put a duoderm over it. He wasn’t fully aware of it until I got him up to the bathroom one evening. He sat on the toilet for a long time, frustrated with his irregularity. He looked up at me and asked accusingly, “Did you tape my butthole shut?”
I laughed and I said, “No, I didn’t tape your butthole shut. Why do you ask that?”
“Because I can’t poop,” he sulked.
“No, Dad, you can’t poop because you haven’t eaten anything in a month.”

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Lauren and Dad

 

In my heart, I feel that we all wanted to Dad to be proud of us. We wanted to show him that we had talents and gifts and ideals that he had instilled in us. We needed the opportunity to show him that even though we weren’t perfect, we were still pretty decent people. It was truly the first time he knew what I did for a living. He saw that I had some unique skills and could do things that even he didn’t know about. The hospice nurse was amazed at how we pulled together and gave him the utmost care. A couple of days before he died, he said to me, “I love you. Thank you for everything you’ve done.”

Dad could not stand the smell of anything, especially if we were cooking. He was bothered by any noises. The rest of us moved outside to the back deck where we essentially lived for weeks. Friends and family would bring us food or we’d take turns going out. We drank wine and whiskey, ate brownies, donuts and Cheetos. We joked that we had all stopped working and were laying around becoming drunken hippies at what had now become known as the Askren Compound. Our Uncle Gary loaned us a twin bed from his furniture store and set it up next to Dad’s hospital bed. We took turns sleeping next to him at night. It didn’t matter because if something happened during the night, we’d all be up and at his side.

We took turns having meltdowns. Life had become stressful for everyone. Bobi quit school and worked intermittently. Sean tried to maintain his livelihood while finishing the room addition Dad had started and was also working on building Dad’s casket. Meanwhile, the septic tank was backing up. Things were literally shit. We felt horrible for wanting this ordeal to be over, but we didn’t want our dad to die. We were all pushed to our personal limits. We were also distraught about Mom. That was the worst.

We fed him ice chips and watermelon. We emptied countless buckets of black emesis, washed him, brushed his teeth, cut his nails, changed his clothes and sheets. We repositioned him, took him outside, and took him to the bathroom. We gave him pills and suppositories and spread an anti-nausea cream on his forearms all day and night. I got him a bong. It was all in vain as we never got his vomiting under control.

One day he managed to stand in front of the mirror and was dismayed at how gaunt he had become. I don’t think he even believed he was seeing his own reflection. He became more accepting of his prognosis. He was ready to go every day. He told me that.

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Dad and Nick

First we told him he couldn’t die on Lauren or Nick’s birthday. Then we told him he couldn’t go on June 13. “You can’t die on David’s birthday.” Then we told him couldn’t die on Father’s Day or Sean’s 50th birthday (June 30) “Maybe I’ll go out with a bang on 4th of July,” he said. On Independence Day he was still hanging on as fireworks exploded in the neighborhood all day and night. “Oh, good, he said, “Someone’s coming to shoot me.”

When we were still able to get him outside in the wheelchair he would watch Sean put the finishing touches on the room addition. He’d tell Sean how to do things and sometimes Sean would pretend he needed advice about what to do just to make Dad feel involved.

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Around 1956, Dad and his older brother, Charles, pooled their money and bought a hammer to share. Dad started building things using that hammer, but over the years, Charles had gotten possession of the hammer. In mid-June, Charles brought that 60 year old hammer over to the house and Sean helped Dad drive his last nail into the wall of the room addition. It was heart wrenching to watch him struggle to hold a hammer and a nail against the wood and weakly pound the nail, a task he’d done a million times before, effortlessly with one strong blow. With that completed, we announced the official closing of Askren Designer Homes after 45 years.

20160624_124705My brother spent weeks building, sanding, and varnishing Dad’s casket from cedar, the wood most common in Dad’s houses. I know it was both cathartic and excruciating for him to take on that project, but he did it with the utmost love and care. It turned out to be a beautiful piece of art. On the lid, he had Dad’s logo and ASKREN DESIGNER HOMES carved. Reluctantly, we took Dad out in the wheelchair to view the casket. We had gone past the point of being too morose. He was pleased with the craftsmanship, but he was disappointed that the logo was too small. True to form, he wanted things bigger and better. Well, we told Dad, it didn’t matter because we were just going to put him in the grave and Sean was going to keep the casket as a coffee table. Then we said Sean was going to start a line of caskets and call the company ASKREN DESIGNER FINAL HOMES.

Then there was talk of funeral service and music. Dad wanted to design a headstone. I had a meltdown (how many was this now?). I didn’t want to talk about things while Dad was still alive. I didn’t want him to die. I didn’t want him to be sick. I didn’t want any of this nightmare to be happening.

14317483_10153857417086156_6671134100706042777_nAfter all the “You Can’t Die Today” days, Dad could no longer get out of bed. He became less and less responsive. We spent our days keeping him clean and holding his hand. I’d play the Frank Sinatra and Friends radio station on Pandora for him. I asked for a suction machine to be brought in so I could keep his mouth cleared. I didn’t want him to choke to death.

On the day of July 13th, I woke up and I knew that it would be Dad’s last day. He had been essentially unresponsive for 2 days. His vomiting was becoming more foul and I think he’d developed an intestinal blockage. We called the hospice nurse to come out. I pressed his morphine PCA button more often.

As his breathing became more erratic, the four of us gathered around him, held his hand and told him it was okay to go. I had the Pandora radio playing next to the bed. At 2:05pm, Frank Sinatra’s voice came over the radio, completely randomly, singing “Fly Me to the Moon” as Dad took his final breath.

Afterwards, the hospice nurse told me that she’s have the equipment picked up. By this time we had acquired a walker, a wheelchair, a shower chair, a bedside commode, oxygen, and the suction machine. I nodded and asked, “Can I keep the bed?”

Obviously puzzled, she asked, “Why?”

“We’re not taking him to the funeral home,” I told her. “We’re keeping him here until the funeral.”

“Oh-Kay,” she said slowly.

We had already opted against embalming and I could not bear the thought of him lying in the funeral home. There was no refrigeration there and he’d just be on a slab in a dark room, alone. Mom, to my surprise, agreed. The only thing I wanted from the funeral director was transportation.

I cleaned the inside of Dad’s mouth and secured his jaw with a pillow under his chin and then secured the pillow to the headboard to keep his mouth closed. Bobi and I bathed him and Sean trimmed his beard. We put clean underclothes on him and I encompassed him with bags of dry ice.

I assumed–wrongly it turned out–we’d have a funeral on Friday, two days later. I’d planned to keep Dad cool on dry ice until we could put him in the casket and have the funeral director take him to the church and then to the cemetery. As it turned out, we were not able to have a funeral until Sunday and a burial on Monday. The reality of my father’s body lying around in the middle of a midwestern summer, unembalmed, for 6 days suddenly became very, very anxiety provoking. This, coupled with the fact that I had no previous idea that DRY ICE DOES NOT MELT DRY. Discovering him, in the morning, saturated from neck to toe with water running onto the floor put me into the worst tailspin of this whole calamity. It wasn’t bad enough that my dad was dead, but now he was floating on a bed of ice cold water and it was all my fault.

My mom poked some kind of pill down my throat because she didn’t know what else to do. It could have been cyanide for all I knew. I’m not sure she even knew what it was.

Later, Bobi and I went to pick up Lauren from her house. As we pulled into my parent’s driveway I had a feeling that Bobi had not told Lauren about our plan. I said to Lauren, “Before you go into the house, I think you should know that Grandpa is in the living room.”
“What?!” she said, “Is that even legal?” Insanity of family confirmed.

Sunday finally arrived. We made Mom stay upstairs while Sean, Bobi, and I cleaned and dressed Dad in one of his dance outfits: a pair of black pants and a black and white zebra shirt and black dance shoes. The clothes were shockingly baggy. Sean placed the casket next to the bed and we lifted and placed him into it. Bobi and I touched up the color in his lips, but otherwise left him in a natural state.

The funeral directors came to the house expecting the worst. I know because they told me later. Their mouths literally fell open when they saw how well we had kept him. I tried not to let them know how nerve-wracked I was.

At one point during this time I said to Dad, “Thank you for not making me an only child.”
Vainly, I always thought I was the strongest child, but, as it turns out, I am not.

I saw my sister’s strength come through time and again. I know she struggled terribly with this, but she always managed to rock steady, at least around us. While I was melting down, she stayed calm and consoling.

As for my brother, the things he took on during all this was more than any human could have done. I am utterly amazed by him. Besides all the physical labor, he was a strong, loving and gentle caregiver to Dad.

I love you both so very much.

Dad died exactly 13 weeks after he was diagnosed. It seems like such a short time, but he suffered so much. He has left a terrible void in our lives. I’m pretty sure we all have an element of PTSD and for me, personally, this year has been difficult. I don’t stop thinking about it. We all had dreams of doing things with Dad. My heart breaks for Mom every day and this keeps me in a constant state of sadness. If this had to happen, I am happy it happened the way it did. I am grateful that I was able to be there to help to take care of him. I’m glad he got the best care he could get in every way.

I am grateful to my aunts, uncles, cousins, and friends who brought food, sent cards and gifts, and came to visit. Thank you for rescuing us at the right times. I’m thankful for the Hospice of Cincinnati and Pierce Township Fire Department. I’m thankful to my co-workers who supported my absence for so long. I’m grateful for Monica who has dealt with my emotional aftermath and put up with my crazy.

 

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10 comments

  1. This is such a great story; Joanne thanks for sharing the link. We miss Larry almost every day, and it’s not just because we live inside of the work of art house he built for us nearly 30 years ago. We have so many good memories – the dancing lessons for our daughters wedding; the balloon ride; trying to push his Boss Hogg up his new driveway in Ryland. I was honored that he came to me immediately after the diagnosis; I had recently left my Oncology practice to return to academic medicine, but recommended the clinical trial. We still don’t know why some people respond well (for a while) and others don’t; or why one gets pancreatic cancer at all. Sometimes life is just not fair. We miss you Larry.

  2. What a beautifully written account of your Dad’s last days. He truly was a larger than life guy and I too, thought he would live to be 100.
    I have never known anyone like him and I am so lucky to have had him for a friend. He made the world a better place.

  3. This was beautiful and has left me in tears. So thankful for those days in the 70s and beyond to remember, visualize, mentally go back to the days at your house where I still hear the voices of all of you frozen in time. Your house and family will always be a part of who I became in life. Peace to you dear friend as you remember and treasure. ❤️ Christy Z

  4. I never had the honor of meeting your dad, but I can tell you the greatest thing he ever created was you. You are one of the most incredible ladies I’ve ever known and you are who you are because of him! Love you so much!

  5. This is a beautiful tribute to your Dad……and your whole family. And, as always, so well written that I almost felt like I was a part of it. Hugs and love to you and your family.

  6. This brought tears and laughter…I could hear your dad’s voice when you brought the deodorant home. I continental to keep all of you in my thoughts and prayers

  7. Thanks for the wonderful story Ta. I lost my mother the 23rd of August and as you know losing a parent is hard. The journey you shared was overwhelming but I’m greatful that you were able to share. I have the same heart aches and reading this makes it a little easier. I try to tell myself mother wouldn’t want me to stay dad so I work everyday to be happy so she’s not sad for me. Hope that you can one day be happy again.
    Love from an old friend.

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