El Dorado… aka Cleveland

I have not spoken with dad since I left Chicago… I have had it on my list to call him, which last all of 1 minute and 27 seconds on average. Usually goes something like this:

Hello (lately, a noticeably annoyed).

Hey dad, what’s going on? (I used to say, ‘How are you?’ like every other person on the planet but he would take it literally and respond,’I am find, stop asking me about my health!’)

Great, great. How are you?

Good, its cold in Washington, feels like …

I want to talk to you about the trip I am planning. I am going to take the family to Africa this summer… blah blah blah blah (‘how are you’ was not a question, just what one says and he then would proceed to cut me off and monologue on about his latest delusion of grandeur. Sometimes it is a trip to Europe, most recently Africa, other times New Zealand. The worse he felt, the further and more extravagant the adventure).

Sounds great dad.

It will be great. Good family time.

Yeah, yeah it will. Alright dad, I have to run. Coming home next month.

Okay, bye.

Bye. Love ya. (Love ya… I am not sure when I started adding that or why. I think it is when he first got sick and it was bad, or seemed real bad because it was the first time we ever went through drug treatments. Back then, he would let us help him. So even though we had history and baggage, there would be another day. And helping him brought us closer… he would actually allow himself to be weak in front of us. Not so much any more.)

So I didn’t call him from December 29th to January 8th. No call when I got home. No call on New Years Eve or Day. Honestly, calling him didn’t even cross my mind on New Years Eve. Since then, I knew I should call him, I just couldn’t muster the energy. When I called today, his iPhone was full (he has either forgotten how to delete messages or doesn’t bother to) and he didn’t answer the home phone. I felt a sense of relief followed by a pang of guilt and then I told myself I would go for a run tomorrow no matter how cold.

I called him today because Sis called yesterday. Sis got a frantic call from dad yesterday when he was at dialysis.

Bro, he called crying, saying he could not get home along and told me to come and help him.

He was crying?! (I hoped he was. It would mean he was going to allow us to help)

More crying out, frustrated. (no such luck)

Sis shows up at the dialysis center. When she says dad’s name at the front desk, the nurses scowl and say, ‘he is mean!’ Sis tries to apologize, but they know he is sick and Sis knows there is nothing she can say to make it any better. When he blows, he blows like Mt. Saint Helens.

He then unloads on Sis. Telling her the she is a terrible person and that she and I treated him like a gerbil over Thanksgiving (that post coming soon, promise!). The typical stuff, although now he is gerbil, not a dog… I wonder how to interpret that?

No matter how often it happens, I can’t imagine how much it stings Sis. He unloaded on me over Christmas, called me an asshole in a cab home from the hospital, so I just got out of the cab and took a walk. Some how, Sis is strong enough to sit there and take it. I keep telling myself that he is sick and not to take it personally, but my blood starts to boil and my ears begin to pop with stress. If I don’t leave, I will either become him and say things I would regret or have a deadly anxiety attack. Sis takes it , sheds some tears, and then tries to figure out how to get him help. Strength comes in many forms. In this form, she is Schwarzenegger and I am Pee Wee Herman. She does what she does to ease her conscious. I do what I do to survive.

After his rant, he tells her he wants to go to Cleveland to have his dead kidney taken out. Cleveland… dad’s El Dorado. The Cleveland Clinic has done amazing things for him over the last ten years. UCLA told him he had six months to live (we got a nice vacation to Hawaii because of that), Cleveland kept him alive and many times restored him to health with novel biological treatments and other tricks of modern science.

But now, anytime there is something wrong, dad says he is going to Cleveland. A few years ago he needed to have his hip replaced (cancer had formed on the top of his femur and they feared it would collapse under his own weight). There are plenty of people at Northwestern or University of Chicago that could have done the surgery, but he boarded a plane to Cleveland by himself to have it done. Sis was on her way to Canada, ready to cancel her trip, so I jumped a flight to ‘hang with dad’. When I got there, he said, ‘what are you doing here?’ Things were better back then, so I just said I had some time off and wanted to come, hang out and catch an Indians game (the won).

After the surgery, they would not let me see him because he was in the critical ICU. Finally, they let me in and told me they were very concerned about his heart but he was ‘going to make it.’ Jesus, ‘going to make it,’ it was only hip surgery. After that, it wasn’t only the cancer that could kill dad, but having surgery to try and prevent cancer from killing dad that could kill dad.

They botched the hip replacement surgery but that didn’t matter. Neither did the fact that the doctors repeatedly tell Sis and I that there is nothing else they can do other than a drug regiment (which is severely compromised by going on dialysis). Whenever dad is not feeling well, he says, “I am going to Cleveland” because in his mind, they saved his life several times and they will do it again.

My worry is that much like seekers of El Dorado, that dad will set off for Cleveland and never make it back.

Gagging on Lemon Chicken

Got a call from Sis last night. Little Bro’s mom is away and he is staying with dad this week. I was happy to hear he escaped for a few days and went to a friend’s house in Michigan. Little Bro’s days with dad consist of sitting on the sofa, playing guitar and pretending to do home work. Dad has a tough time relating to people much less teenagers, but in his mind, he is the most fun dad in the world despite that he sleeps most of the day, sits in his office staring at the wall, or is telling Little Bro what to do.

Growing up, dad “had” us every other weekend. He would call on Friday nigh, tell us to be ready by 9 AM and that we would have the weekend of a lifetime. 9 AM would roll around and we would wait… and wait… until he finally showed up around 11 or 12. It got to the point where Sis and I would get in the shower at the designated pick up time knowing that would give us enough time to get ready before he showed up.

The best weekends of our lives included going to his apartment, sitting around, inventing things to keep us busy (which in hind site was much better than playing PS3 or watching TV – thanks dad!), and then eating dad’s “special lemon chicken” or getting lucky and ordering Gino’s East Pizza. The lemon chicken was so special, we had it every time we saw dad and now I get a gag reflex if I even smell a fruit garnish on poultry. A few years later, dad bought a weekend house in Wisconsin. The house was a kids dream – lake, basketball hoop, large yard, families with kids – the whole upwardly mobile families dream. Only problem was dad turned it into an internment camp. Sis and I spent our weekend picking up sticks from a lawn that was infested with horse flies that would buck and sting our scalps. I spent an entire weekend underneath the house cleaning out old garbage, dead rats and other assorted biohazards. Yes, this is upper middle class whining. Hard work was not the problem, it was the thankless, Gestapo-like atmosphere dad created AND his disbelief when Sis and I rebelled and resisted going to the lake house. For dad, atmosphere, mindset, and intention never mattered. For him, a lake house was fun, period. It did not matter what happened at the lake house – what you did, how you did it, how you were treated were immaterial. The mere fact that he bought a lake house meant weekends were now fun and we were ungrateful if we expressed that what we did at the lake house was never enjoyable.

When dad and his third wife got divorced, I worried about Little Bro and wondered what he and dad would do when dad “had” him on weekend.  When dad was healthier, he did the only thing he could think of to entertain a young boy – travel. Little Bro has more airline miles and stamps on his passport than a low level diplomat. Some of the trips he really enjoyed – skiing, surf camp, and Costa Rica. Others, he was luggage dragged through the streets as dad oogled foreign women, ate at overpriced cafes and bought bad, tacky local art, including the marble, rollar-skating polar bear. Since dad has been sick, Little Bro just sits around the house, hoping dad doesn’t rush him off on a half-baked trip to buy a ranch in rural Florida (yes, dad is planing on buying swamp land in Florida). Fortunately, he can escape for a few hours, head over to Borders or Best Buy and wander the aisles, or shoot the shit with Bev, the door lady at the building.

Bev told me that some days, Little Bro comes down and talks to her for about an hour. ”Man, he get’s it coming both ways. His mom is off her rocker and your dad, well… he is too!”

Now we are facing a more serious problem. While dad continues to pass the doctors mental tests, his mental facilities continue to dull. He continues to be aggressive, he is forgetting more and more and Little Bro is scared to get into a car with him. Yet, Sis told me yesterday that dad was planning on driving to Michigan (from Chicago) to pick Little Bro up from his friends house. When Dad picked up Uncle Bob from the airport on Christmas Day, he was so tired from the 1 1/2 hour round trip, that he took a 3 hour nap. How in the world is he going to drive 3+ hours to Michigan and 3+ hours back in one day?!

Sis and I stuggle because if we tell dad this is not a good idea, he will explode and it will make him more dead set on doing it. Yet Little Bro’s safety is the most important factor. We have no legal authority to take the keys away or limit his driving. And trying to do so would definitely mean our relationship with dad would be over. Honestly, on a personal level, that would not be the end of the world and reduce my stress level, but it would also mean that he would not have the support system he needs to navigate through these last months/years of his life safely without putting Little Bro and other’s lives in danger. And, he is my dad. More so than ever, I understand blood is thicker than water and no matter how strong the urge is to walk away, you never can.

Am I being to melodramatic?

Sis on Uncle Bob

I do not like Uncle Bob as much as my brother. Yes, he masquerades around as a “southern gentleman”, sort of a Mark Twain character but, is as rude, stubborn and solipsistic as my father. At least Dad as some measurable success with his professional life and three awesome kids. Uncle Bob ,sadly, has nothing to show for his life. Shocking as it was to see Uncle Bob the other day, a man in his late sixties with mayonnaise dribbling down his handlebar moustache, I was not surprised at his slobbery, 80-something state. He is the oldest of nine, and his face reads like a map, reflecting a view of someone who has been bound to the nightmares of their childhood. Within 15 minutes of greeting him, he was sharing a stream of ghoulish thoughts about his sister “Debbie,” the oldest daughter directly behind him in birth order. “I hate Debbie. Debbie always got out of doing her Sunday chores because she would lie about attending mass.” I thought ok, well that’s not that bad.. but then he said it: ” Debbie slept with Dad.” Meaning his dad- our grandfather. Well, my stepfather, who was standing next to me at the time, and I froze. I felt a little piece if me die right there, because whether that factoid is manufactured or not, I was assured whatever drove Uncle Bob and my Dad to their sickly states, was equal to or worse than the fiction being spouted out. Is this an excuse for their bad behavior? No. But it might reveal an explanation. Typically, after a bad night of verbal attacks at my dad’s, I go home and sob in my husband’s arms to relieve the stress. This night was no exception. ‘Sis’

Compassion and lack there of…

I was excited to see my uncle (we will call him Uncle Bob for anonymity’s sake). He came in for Christmas this year. We always had good conversations about books, most likely about a Beat, and he would be a good distraction from dad. Maybe even keep him in line a little.

Bob is my dad’s older brother, the eldest sibling of nine. There are seven left… well, one has been cast off so more like six. Turns out mental illness is a heresy in our family, according to dad, that requires excommunication, but more on that later.

Uncle Bob is a character, Southern Gentleman, and player all wrapped into one. And I mean “character” in the good sense – humorous and larger than life, but humble. I remember when I was in college, my aunt said, “You are a character.” It sounded pejorative and I still wonder what she meant by that. Was I too over the top, being to crass and not being respectful?

Uncle Bob was a good character. He never relate well to kids, so I did not get to know him till I was older. But then we talked about books, girls or how to restore a worthless piece of furniture I thought I could make valuable. We were chatting a few years ago and I asked him how he got into antiques (he is an restorer and seller of antique french armoires).  In his great Dallas drawl, he said:

“Pick up chicks.”

“Really.”

“When you ask a girl to come up to my room, 90% of the time she will say no (and the 10% that say yes, you wish you never asked). Ask her to come up and see your nineteenth century French armoires, you have a pretty darn good chance of getting in her pants.” From the stories I heard from and about Uncle Bob, he wasn’t lying.

My sister, brother-in-law, mom, and step-dad want to dad’s on Christmas day. My mom agreeing again to spend a holiday with her ex-husband knowing that we needed the support. We walk in. Dad is sitting in his typical chair. He seems to be doing fairly well – decent energy level and disposition. Uncle Bob is sitting alone at the dinning room table eating a sandwich.

I look at my sister and we both mouth, “holy shit!”

The vibrant, viral,  southern gentleman has aged 20 years since we say him last. As he tries to stand up, he falls back into the chair. We reach out to steady him and he looks up with vacant eyes and says, “sooooorrrry” in a clear, distinct, but slow drawn out drawl. But like always, he has a ham sandwich in front of him with a can of mayonnaise that he slathers on with every bite.

No one is sure what happened to Uncle Bob, but we assume he has had a series of minor strokes, none severe enough to send him to the hospital. But they have added up to put his life in slow motion. He seems to have his memory and still tells his stories, like the time he took Miss Virginia to a jazz bar in DC. He was irked that she wanted to leave until she pointed to the clientele and he realized it was a gay bar. “Too bad, the music was great.”

Dad wanted nothing to do with him. Uncle Bob would start talking and dad would cut him off, “What Bob?!” When Bob misheard something, dad would respond condescendingly. In many ways, the men were both in the same boat, suffering from getting old and ailments that could easily take their lives at any minute. But dad had no compassion for Bob. He refused to equate what he was going through with Bob. Bob was slow, obviously older and more outwardly worn out than dad. Somehow, after all dad had been through, he kept his hair and not all of it was grey. If he cleaned himself up and was sitting down, you wouldn’t think a second about it until he stood up, ran out of breath as he shuffled off to the bathroom.

What bothered dad was Bob was visibly and outwardly old, and that made him weak. He commented more than once how Bob didn’t take care of himself, ate poorly, and smoked. In other words, he deserved it. Nevermind my dad had done all those things until recently, too. But he didn’t look old and since dad refuses to accept that he is ill, he was better off than Bob. For the entire three days Bob was there, dad never asked about how he was doing, what had happened to him, what he was going to do. It wasn’t because he thought Bob would be embarrassed about it (Bob wasn’t he freely spoke about it separately with my sister and I). It was because he was disgusted by Bob and didn’t care. He did not show Bob any compassion the entire time he was there.

Obviously, I have been thinking a lot about this. In a way, dad was showing us how we wanted us to treat him. Ask no questions. He didn’t inquire about Bob’s health once. He never offered to help him, helping him clear his plate, get up from his chair, or pause for him to finish his sentence. When we offered Bob assistance, he always looked away. Dad seemed to be projecting his refusal to admit he is sick on Bob, as if admitting Bob was sick and needed help was an admission that he too needed help.

And it struck me that my sister and my display’s of compassion and attempt to help my father, even in the gravest of circumstances, are taken as an affront, an attack against him because no matter what the reality is, he is healthy and does not need help. I am sure there are times that we are over-reacting, but there have also been times when he is so obviously sick that we have forced him to the hospital and doctors tell us he would have been dead within hours if he did not come in.

So what is the compassionate thing to do? To take the abuse, verbal assaults and weather the threats to excommunicate us from the family and do what our hearts tell us we need to do to help him? Or is it more compassionate to follow his wishes, allow him to live the end of his life as he pleases?… but then what about when he wants to drive a car and take our little brother home… When did compassion become so relative?

Working Against Himself

Dad has been talking about having everyone ever for Christmas dinner for weeks. My mom and step-dad came to town to be with us since they knew we needed to be in Chicago. We are all heading over to Dad’s on Christmas day for dinner… or we were. Dad exploded tonight on my sister when he heard we had bought the food for Christmas already. He was going to buy the food for no one was coming over… Interesting how someone can want something so badly and then destroy it by trying to control it so much. In the end, it is all about control and dad is looking got ways he can exert control over any part of his life. I get it… I think. But in the end, he ends up punishing himself. The challenge for us is understanding where dad is coming from. Is he in denial – yes. Is he delusional – in part. Has he lost control over his emotions – yes. Has he completely lost control over his decision making and mental capacity – no, far from it. So we are left in this limbo of always waiting for the next shoe to drop. Should be an interesting Christmas.

Avoidance & Guilt

When I come to town, I usually stay with dad… I always stay with dad. Except this trip.

I should. It is Christmas. Highly likely his last. His kidney’s are failing. He is weak and he isn’t thinking clearly. Last week I came home at 11pm and the stove burner was clicking. I turned it off and opened the windows just in case there was a gas build up. In the morning, I told him he left the stove on, but he said he tried to turn it off but the ignighter was broken. He was turning the knob the wrong way.

But I cannot bring myself to make the move from my sister’s to my dad’s. The anticipation of dealing with his mood swings and anger is creating granite hard knots in my shoulders. Being called an a#$hole and berated shouldn’t be so stressful when you know he isn’t in control of his emotions… But it is becasue it happened before he was sick, just not as often.

When I was in college, I got a call from my mom that my dad laid into my sister so hard, she couldn’t stop crying. When I was in high school he called and told me to work nights at a theater. When I told him I already found a job, he called me a fu$#ing a$#hole (for the first time).

My sister and I are confused. We want to help him. We want to make sure he gets to spend time with family an friends. We want to make sure he gets the care he needs. We want to increase his declining quality of life. But every time we try and help, we are “punished” with a barrage or profanity and told we are the reason for his misery.

How do you deal with that…

I told him I was going to the suburbs tonight. I lied… but tonight feeling guilty about lying is less stressful than dealing with dad. Tomorrow… Tomorrow I will head over for the rest of the holidays or until he calls me an a$#hole and kicks me out.

Smoke & Mirrors

Wow, it is amazing what a person can do to hide their illness. Two weeks ago, while lying in the hospital recovering from kidney failure and going toxic, dad decided to hold a holiday party. My sister and I were in disbelief. Three days before, the man was pissing and shitting himself, berating the family and yelling racial slurs at the unfortunate Asian man sitting in front of him on an airplane. How in the world would he be able to throw a holiday party?!

He hired a company to print and send invitations, spent $1,400 on wine at Costco, and $1,200 on catering.

“So dad, how many people you expect?”

“Oh, about 100.”

“You send the invitations yet?” He didn’t send the invitations until about a week before the party. Who would show up on such short notice – it was high time for holiday parties.

My sister and I head over to the house before the party and he is cooking steaks for dinner… 15 minutes before the party. The caterers are in the kitchen preparing the $1,200 worth of food and dad is demanding everyone sit down and eat dinner.

The first guests arrive. We are relieved. Then more come, and we are surprised. In the end, about 35 people show. That is 20 more than we expected (except dad). And everything goes well. Many of his old colleagues had come and we know he is enjoying himself. At one point, dad disappears into the bed room but he looks okay and is able to work the crowd. And no blow ups.

“Good party, Dad”

“Yeah, couldn’t have gone better.”

The last guests leave and he immediately goes to bed at 8 o’clock. We are happy it went well. It is the first interaction in a while were someone isn’t refereed to as Piece of Sh@# or A#@hole.  But we are worried he exhausted himself putting on a show of health. Or worse, he will be convinced that he is fine. “I’m fine” is his mantra. He could be bleeding out, shitting on himself…

“Dad, you okay.”

“God damn it, I am fine!”

Or maybe, he is fine, or better than we think he is… we will see tomorrow.

Meet Piece of Sh@# and A@#hole

A quick background. Our dad was diagnosed with kidney cancer over 10 years ago. First doctor gave him 6 months to live. After 10 years and a dozen major surgeries, dad is still alive. The man is a fighter. But he is coming to the end but wants nothing to do with it. Wednesday before Thanksgiving, his kidney’s failed. His doctor told him to go straight to the emergency room for emergency dialysis, but instead, he boarded a flight to Boston to spend Thanksgiving with his two older children (us), son-in-law, our younger half-brother, and his first wife (our mom) and her husband of 30 years. It was a Thanksgiving to remember and that post is coming soon.

But I wanted to start this off with our new names – “Piece of Shit” and “Asshole”. Piece of Shit is my sister. She is an accomplished professional with a great husband living in Chicago, IL. I am Asshole. I run a small organization and am a single guy living in Washington, DC. We both like to think that despite our short-comings and peccadilloes, that we are good people. At least our family and friends humor us enough to think so.

Dad, on the other had, decided that we are Piece of Shit and Asshole. He only renamed us recently. He used to just tell us to “blow it out your ass” or “go fuck yourself.” I guess we had not completely embodied those actions, so we kept our given names for a while. But now that we fully represent and embody blowing it out your ass and fucking yourself, we have progressed form the verbs to pronouns. I wonder if the tags on my Christmas presents will read “To: Asshole; From: Dad.”

We love our dad, as hard as that is some times. This blog is about dealing with the changes our father has gone through and the emotional challenges he and we face as he becomes less and less himself and closer and closer to death. Why share it? We need an outlet. While our dad has never been a touchy feely guy (our stories are not represented in Tim Russert’s Wisdom of Our Fathers: Lessons and Letters from Daughters and Sons), it has been painful seeing and experiencing him becoming someone else. So often, we just stand dumb struck and ask ourselves, “what do we do?!” We are certain that despite hearing from everyone that, “this is the worst case scenario,” that there are others out there going through the same thing. We hope to hear and learn from your experiences and that you find a little comfort in ours.

Thank you for following. We will be posting stories – the good, bad and ugly – as they arise and sharing with you some of the “classics,” like barging into the kitchen at a restaurant and screaming at the chef for giving him food poisoning (reality was he was sick from the cancer drugs). Or who knows what will happen tonight at his holiday party…

Thank you for following,

Asshole