Early in the morning of Sunday, August 11th, my sweet Daddy died at the age of 69.
I don’t know what to do. I don’t know how to imagine a life without my Dad. My Dad was the sweetest, kindest, gentlest man I have known. He was the grounding force in the family. The person that kept my Mom, brother, and I from whirling away. His smile was ever-present, no matter what crap headed his way. We differed greatly on matters of politics and religion, but oh, did my Daddy love me.
You know the effed up thing about grief? That everything else in the world just keeps happening. As if this awful thing you are experiencing isn’t real. I don’t know how to be in that world right now.
He let me paint his truck when I was 5 and we lived in the Azores
All life just keeps on happening. I have to go to work. I need to be a parent because our amazing kiddo is here and needs us and is experiencing her own confusing 5 year old sadness and is acting out in all the ways you would expect a 5 year old that has parents that are grieving and stressed might.
Things go on without regard for my grief. Weeds still grow. In the past few weeks, invasive bindweed has reared its ugly head for the first time ever. Plums still need processing. The puppy still needs training. Bills still need to be paid. I still desperately need additional employment.
Life just keeps happening around me. Happening as if nothing is amiss. As if nothing has changed. As if I am a functioning person that can deal with any of it.
Well, I can’t. And I don’t know how. I’m so completely gutted. So angry. So incredibly sad. It is as awful as I thought losing a parent would be, but also nothing at all like I expected.
One of my favorite old pictures of me and my Dad.
You see, in January 2011, after many months of non-diagnosis and general mismanagement, my Dad got diagnosed with surprise liver disease, specifically NASH. Which is basically cirrhosis in a person that isn’t related to alcohol. So, my totally non-drinking Dad got cirrhosis. Which isn’t to undermine any case of cirrhosis. All terrible illness is tragic. But if he had been a drinker, at least it would have make some damn sense. It would have been in realm of things I could have imagined.
A year went by post diagnosis and we thought he probably wouldn’t get a liver transplant (the only cure) because he also had complications that would make transplant surgery very risky. He had large clots in his portal vein system and mesenteric arteries and only a few hospitals around the country are equipped to do such a procedure. Out of the blue, in December of 2011, we get a call from the team of doctors we consulted in Iowa stating he was now at the top of the transplant list and needed to move their immediately. In a matter of a week, 2 lives were packed up and moved 1/2 way across the country, leaving their friends and family behind, on hope. The hope that he would get a liver. The hope that he would beat the odds and return to his normal life. We were, understandably, thrilled!
Headed to Iowa
He was moved down the (dynamic) list a few times when someone sicker arrived and, therefore, missed several chances. Some potential organs were of questionable quality, so were not transplanted into anyone. His disease continued to progress. He endured countless hospitizations for confusion. He once went into a short coma. He underwent routine paracentesis and endoscopies.
waiting for an MD appointment with my Dad back in February
And medication. So much medication. Medication that gives you bad diarrhea as a trade off for keeping the confusion, that comes along with severe liver disease, under semi-control. It was awful. But my dad, my sweet, ever-compliant Dad, just went with it. When he wasn’t in the hospital, he went to the gym every day. Why? Because he knew that the stronger he was going into surgery, the better he would tolerate the procedure. So, he went. Riding the bike. Lifting some light weights. And all the while, his disease progressed and he lost weight. My 6’4″ Dad shrunk to 6’2″ and 170-175 pounds.
On April 20th the call, the one we have been waiting for, came. Surgery was scheduled for the morning. It was actually going to happen and I flew out. I received pictures by text of him and my mom smiling nervously as they take him off to surgery. However, when I landed for layover, things had gone downhill. There would be no surgery. His heart acted up and they couldn’t stabilize him enough for the nature of the extreme surgery planned.
Headed to the surgery that didn’t happen
So my dad, expecting to wake up to a new liver and new life, woke up to nothing but bad news. Scary news. “You’ve gone to surgery, but we couldn’t do the transplant. And we don’t know what happened.”
Two weeks of testing followed. His heart had some mild-to-moderate problems, but nothing they didn’t know about. Nothing that would even be ordinarily treated. But, they couldn’t predict how his heart would react to anesthesia. So, in the end, more bad news. They couldn’t do the surgery. Too risky. He was no longer a surgical candidate and was removed from the list mid-May. Further devastation. Two major blows.
The blows were quickly followed by 2 hospitizations for confusion. And then, he somehow rallied. The meds were very well balanced and he was stable, seemingly better than he had in months. He went back to the gym. He was oriented. He could talk on the phone and make sense. He was able to talk and maintain connection with his loved ones. I remember feeling hopeful that, even without a new liver, he would be able to live a decent amount of time back home in California and keep his disease managed.
Meanwhile, the family made a zillion calls to transfer his medical care back to their home in California. For 2 weeks he was feeling pretty good. I imagined him thinking that, yes, it was all still horrible, but at least he was feeling pretty ok. At least he would be able to be in his own home and be surrounded by friends, family, and grandkids.
Except then early June, he took a fall walking into church. He was looking at the Iowa River flood waters and caught the edge of his shoe on a tiny blip in the sidewalk. A tumble any of us could have taken. Except he fractured his pelvis, his sacrum, and a rib.
This is a blow none of us anticipated. None of us dreamed about, worried about, or were afraid of. And there it was. My dad, moaning in pain in the hospital while they tried to get him comfortable enough to get to rehab. Me, grateful they were non-displaced fractures, so he won’t have weight-bearing restrictions and didn’t require a surgery he couldn’t have. Pain is incredibly difficult to manage in patients with advanced liver disease. Pain medication can cause confusion. And, causes terrible constipation. Constipation, in liver disease, causes confusion. He was a medical disaster for about 6 days. Confused. In pain. Dangerously low sodium levels. Incredibly fragile and generally a mess.
They got him stabilized and transfered to a skilled nursing facility to rehabilitate. After the unbelievably awesome care at University of Iowa Hospital and Clinics over the previous 1.5 years, the transfer to a skilled facility was jarring. The care was not great and it was not even close to a rehab facility. This was a hang out and wait to die sort of place. Sure, they were nice. I mean it is Iowa…people are generally nice. And, sure, they had physical therapy there, but apparently the scope of rehab was limited to transferring my Dad to a wheelchair to go to the dining room and eat things like “Taco Twist Soup” or “Emerald Pear Salad” or corn dogs. Shudder. The man needed to get out stat.
Dad and my brother in the Iowa nursing home
The lovely Ladyfriend convinced me that he need to transfer home ASAP to be closer to family and friends. I agreed, but also was hesitant. Could I facilitate getting my broken and banged up father from Iowa to California by myself? I am not a social worker. I don’t know the first thing about discharge planning and was getting close to zero help from his facility. Sure, I am a nurse, but I’m not a rehab nurse. I didn’t know much about transferring in the way he would need because, well, he really hadn’t been transferred much yet. Would he be able to tolerate 2- two hour flights and multitudes of transfers? Would I even able to do those transfers? I figured if something went awry, our layover was in Denver and we’d head to a hospital there rather than continuing to Sacramento. The sudden plans to move also meant my Mom suddenly packing up all their belongings and being ready to move in a matter of days.
Overwhelming to say the least.
But, we did it. My brother went and helped my mom mail many giant packages back. My mom did an amazing job packing. I was on the phone all-damn-day every day trying to coordinate his care at his current location and get them to actually cooperate with transfer, plus find an appropriate facility to accept him on the California end of things. I flew out mid-June (with the Babylady) on Tuesday night red-eye flight, arriving Wednesday morning, still without a solid plan other than I knew I could bring him to the local ER upon California arrival if nothing came to fruition. Not a solid, confidence-boosting plan, but a plan.
By Thursday evening transfer arrangements and new facility were finally secured and Friday we were on the plane home. The trip involved 12 seperate stand-to-transfers (to and from different wheelchairs, chairs, etc)– or about double what he had done in the nearly 2 weeks total since his fall combined. And, about 12 hours of sitting up with his broken pelvis and sacrum. Painful? Yes. Worth it? Totally.
After 18 months in Iowa City, my Dad went home to California.
Past security with a man in a wheelchair, a child, 3 laptops, an iPad, 4 carry-ons, and 3 neck pillows, and a pillow. Did it. Whew.
Longest day ever, but back home near Sacramento
Sweet surprise at home. My brother, sis-in-law, nephews, and Ladyfriend all surprised my folks by being there from OR/WA. Dad went to rehab, but we took a quick drive by home so he could see it.
He spent about a week in a subacute rehab facility to get strong enough to do the 3 hours of therapy he needed to be able to do daily in acute rehab. He made it home by the first few days of July. Glorious home. He spent about a month at home, seeing so many of the people he missed and enjoying being at home, before he took a turn and the confusion and complications returned.
checking out of rehab and headed home!
The Babylady and I flew down to CA at the end of July after my Dad had a difficult bout of confusion and non-responsiveness. The next few days were filled with conversations of hospice, end-of-life wishes, and getting the whole family gathered around. We brought my father home and surrounded him with so much love. Grandkids were around and tackling one another and eating popsicles. Last trips in the golf car to the putting green were taken. Oh, how the Ladyfriend and my Dad loved to golf together!
Look how cute he is! Made to the putting green, as hoped!
I was able to stay with my folks when everyone needed to return to places and I am so incredibly grateful for that week. We laughed and cried. I cooked. I snuggled. I rubbed his forehead. I made ice cream. I gave morphine. And I made sandwiches. The sandwiches were important, very important.
One of many
For as long as I can remember, my Dad loved for me to make him sandwiches. He didn’t care what was on them, per se, but he wanted something with lots of layers and it needed to be messy. I loved making them for him probably as much as he enjoyed eating them. The last week I spent with him, I made him lots of sandwiches. Big, messy, piled high sandwiches. And with pickles. He was on low sodium diet for his liver disease and gave up pickles. He adored pickles. Now was the time for pickles. He would happily moan and groan and ooze fillings and whisper that I needed to tell my Mom how to make him sandwiches for when I had to leave.
I left the morning after his last sandwich (and almost his last food), but I took a series of phone pictures to show my Mom just how it was done, Daddy-style.
First, the bread. One slide slathered in mustard, the other in mayonnaise
He preferred wheat or rye, but never sourdough. Mustard preference was plain ol’ French’s.
Meat, preferably more than one kind. I put the roast beef next to the mustard and the turkey next to mayonnaise, because it seems like a better pairing. But, then again, I despise both mayonnaise and mustard and don’t really like lunch meat, so maybe I’m wrong. But he loved it, so I think I’m right.
Cheese layer. Two varieties are better than one. We stuck to havarti and swiss this week.
The “stuff” layers
The middle layer of stuff should have wet things and pickled things. Pepporcinis are a given- preferably 4 sliced open and splayed rather than cut into pieces (less lost product this way). Pickles would be best, but I ran out on the last day, so used thinly sliced cucumbers. Lots of pepper. Lots.
the final innards
Hold all the wet and sloppy in with a bit piece of lettuce. Iceberg works. Toss on some bacon if you have it.
Assemble the two sides
Marvel at how your Dad will possible eat it the mammoth sandwich.
squish sandwich together and slice. Chips and (hopefully) pickle slices on the side.
The chips are key. At time of eating, the sandwich is reopened and chips carefully applied to cover the full layer of sandwich, reassembled and only then it is eaten.
My Dad’s last sandwich
I love you Dad. I miss you more than you know. And, I hope you are eating sandwiches and ice cream.
More on my dad and this journey: Jan, 2012: Cruise Control & Jan, 2012: Here We Go Again