life as a caregiver

My Life as a House


The quaintly cliché notion that surrounds terminal illness has no better friend than fiction.

I suppose if one has never watched another die than the idea that fleeting finality will coalesce into heartwarming relationship building that shores the foundations of love so that it may bear the separation and even jump-start positive growth experiences is comforting. As it is meant to be. But it’s not real.

Rob and I watched Kevin Kline’s 2001 film entitled Life as a House last evening. Of course, Kline’s character is dying. Naturally he is estranged from his child, ex-wife and living life in general prior to receiving his personal wake up call. And as most dying people do, he decides to demo the shack he lives in – interestingly situated on prime California ocean front property – to build a new home to leave to his sixteen year old son.

Although, the house is the least of what Kline’s character hopes to leave behind, a loft full of death-fueled ambition propels this man.

And it’s predictable. Epiphanies pop like flower buds in the morning sun after a night’s rain. Good is rewarded and annoying folk awarded their comeuppance.

Kline’s character dies more convincingly than 99.9% of the screen deaths I have seen. Having stood bedside myself, I am morbidly critical of fake death. His last moments struck truth. Not that I care all that much to see accurate death-bed scenes, but I hate it when they are prettied up.

Admittedly, given Rob’s recent heart attack, Dee’s birthday with all its memories, and it being the season of “anniversaries”*, we probably should’ve watched that horrid Vince Vaughan tripe holiday throwaway I found the last time we were at the book mobile.

But we are fond of Kline. He’s also worth watching. Vince? Not so much.

What’s stuck with me today though is  the lessons thing. That when someone becomes so ill that death is inevitable, those around learn something from that person’s grace under pressure example. Dying people are seen as sages and their loved ones gather at their feet like disciples at the Last Supper.

It’s not like that. Love is more often left hanging on whatever peg it was carelessly allowed to dangle on and recalcitrant children opt to revert even further to the typecasting of their younger selves. Neighbors more often decide to scuttle like roaches than step up and words are left unsaid that need to be spoken and shouted that should be swallowed.

The whole stoic saint persona was/continues to be the most difficult for me.

Rob’s recent brush with acute illness sharply reminded me that I function better in long seige conditions and not in the initial skirmishes when the enemy’s unknown and the terrain is new.

But I did like the house analogy. Death is a metaphor’s goldmine. To me it makes total sense that the old is razed and the new is rebuilt atop. Phoenix from ash. Apt.

I dream a lot about houses. They are never finished and I am usually in transit from one to another. They are always in the college town of long ago, which symbolically makes no sense aside from the education aspect.

I wonder sometimes what it will mean if I should ever dream that I am in a finished house. Of course, I will have to actually live in one first as I need a template.

Three houses passed university and not one ever “done”. Now there is a better analogy for my life.

Best line – “Change can be so slow that you don’t know if your life is better or worse until it is.” That, thank goodness, is not one of my analogies.

*I think the whole anniversary of deaths, non-birthdays, non-wedding anniversaries and – worst of all, in my own opinion – the idea that events leading up to deaths should be observed in any way are products of a society lulled into the false belief that death is the trauma that keeps on refueling. And that ‘s it better to acknowledge and acquiecse to it than simply acknowledge and get back to daily life. I read accounts of people who literally lose weeks to gearing up and ramping down. If I took time out to do more than simply recall that “oh yeah, that happened today”, I would never get up off the floor in the corner I was curled up in. I’d be like that old SNL skit. “Yes, the late Mr. Loomis used to lay in a basket by the door. He had no spine, you know. God rest his soul.”  If grief is a 12 step process, and I suspect strongly that it isn’t, it’s not productive to recycle it yearly. No good can come out of  that kind of hindsight flogging.

Stage 4


When cancer has metastasized to sites beyond its origin, they call it “stage 4”. In my dad’s case that means that the tumor in his lungs has either grown into the heart muscle or aorta or that the size of it and the effusion it has caused warrant the dire level.

In any case, he is 81 years old and already suffering from pulmonary disease and severe osteoporosis. He would not survive cancer treatment. They are discharging him from the hospital tonight.

When I talked to my mother, the lung specialist had just left, and the nurses were getting Dad ready for discharge. They don’t waste time. Mom sounded very matter of fact. I remember that tone. I used that tone a lot myself. I still use that tone when I talk about Will’s illness or death. I have cultivated it and it can be a very useful barrier.

I have tried to remember what it felt like that day, the one nearly five years ago now, when the doctors gathered in that tiny exam room just off the lobby of the neurology waiting area in Iowa City and told me that Will was going to die.

Only that is not what they tell you.

They give you the name of the disease. They tell you that it has no treatment. They tell you that things will progress. Sometimes they have a time-line. Mostly they try to exit the room as soon as they can.

The day they told me that my husband was going to die, my Dad was in the waiting area watching BabyD, who was truly a baby then – just fifteen months old. I was too angry to cry. Angry with the doctors for not knowing more about what was wrong so they could answer my questions. Angry with Will for hiding so many of the early symptoms of his illness from me. Angry that I was alone and too grown up to just throw us all in Dad’s car and go home with him.

And my Dad said nothing. He didn’t chastise me for my reaction that day. He didn’t judge me like so many people would in the care-giving and widow years to come. He just helped me get Will and BabyD to the next waiting room for more tests and then to the parking lot and our vehicles for the trip back to our house in Des Moines that would never be our home.

Aside from my Auntie, Dad probably was the most consistent supporter I had during that time.

I asked Mom how he was doing, but I could hear him joking with the nurses in the background. He is quite the flirt when he is in the hospital.

I wonder what it feels like to be told you are dying when you were dying already. It’s like double-secret probation in a way.

Later when I talked with Rob, I told him that I feel worse knowing he has cancer and is dying then I did knowing he was just dying of the pulmonary fibrosis. And it doesn’t make sense because we all knew he didn’t have much time left anyway.

The doctors say a year or less which is nonsense. Even Mom saw through that evasion. And the doctor balked at hospice. What is it with doctors and hospice? Why do they wait so long?

I called my Auntie. I left a message for CB. DNOS called me, and we talked a bit. Mom told me not to come yet, but I think she is still in shock. DNOS agreed and is going to use her professional connections to get the real scoop on Dad’s condition. It pays to have a social butterfly sister who used to work at the hospital lab.

I asked her how she was.

She said, “Fine.”

But she choked on it a bit and when I asked again, she told me she would call me later after she knew more.

DNOS would have made a pretty good NOS.

No More Hump Day Hmming for a While


The muse of hmming, Julie, is recovering and regrouping after Ike and so it may be some time before I inflict introduce another Hump Day Hmm for consideration. However, it has been a day or two since I put up a fresh blog piece and my life has not been that static, so I have decided to provide a bit of an update.

I am still working on the short story known as Kumari. It has garnered 4 reviews on the critiquing site and although not a single one of them had any idea what the story was really about (my bad totally, I know, and I am working on clarification), I did get some advice that was useful and have employed it to the betterment of the story.

The main complaint I received about Kumari is that the character isn’t likable. Not even a little bit. And hurray! That is what I wanted them to think but apparently the main character has to be likable or at least redeemable in order for the reader to want to read at all. I discussed it with my writing group last night and was reminded that I am the author and I need to stay true to my character. She is not likable but how could she be? She was raised to be indifferent and callous. Further, the point of the story is to do more than entertain but to make a reader think.

Thinking is asking a lot of readers these days. We are a society that expects to be entertained as passively as possible. No deep thoughts allowed. But I don’t think that sci-fi/fantasy should be mindless. It is a genre that was meant to allow authors to explore bigger issues and moral questions. 

So I am focusing on clarifying and beefing up existing content and we’ll see what happens next. One reviewer thought there was potential for a very dark story. Perhaps this is my Apex submission after all, eh?

Speaking of Apex, they are having their annual Halloween flash fiction contest and I am entering. The theme is “election horror” and I have a nice little piece that I tried out on the writing group last night which they liked. Of course, they are Canadians and it isn’t hard for anyone native to here to imagine the U.S. as a den of evil and conspiracy.

I have also been occupied with monitoring the condition of the family down south these last two weeks. And if we had a color code system we would be orange-ish.

CB had another mini-meltdown and I spent numerous hours on the phone trying to talk him off the paranoia ledges he sometimes talks himself up onto. He apparently spent a few days harassing our folks to the point that Dad had a breathing episode and Mom was in tears. I think I may have put a spot to that for the time being.

DNOS has informed me that when Dad dies, CB and Mom are my responsibility. She will handle the arrangements and BabySis. In other words she will take the easy stuff and I will be left to deal with crazy and exploding. It’s a good thing I used to teach public school. That was a typical day for me once.

That was a while ago and Dad has failed quite a bit even since we last saw him in June. He can barely exert himself physically without bringing on severe shortness of breath due to the demands movement place on his body. 

And I can hear the disinterest in life now in his voice. He told DNOS recently that he is “tired of making decisions”. 

My Dad, the ultimate Virgo, is tired of being the boss? That is so not good.

Rob has asked if I need to go down there now. I am playing a wait and see on a daily basis. If you had asked me even last year if I wanted to be there for the end, I would have said no – thank you  – but no. Deathbed vigils are hellish in an out of body experience way. The days or weeks leading up are torture because it seems like every fiber of your being is on red alert with sirens blaring.

But now, I feel a bit differently. Mom and DNOS are ostriches. They will not see or ask or do unless someone points it out to them. The truth is that I am the only one in my family who morphs into Action Girl when it is crunch time. I was born with the crisis management gene. I might fall apart but not in the middle and not when it counts. I always come through when it counts.

Now here is the kicker, the evil selfish daughter in me doesn’t want to put my life on hold to go down. I have things falling into routine now. I am starting my first writing course at University in two weeks. I just got elected to the board of directors of one of my writing groups. I am auditioning for another contributing writer gig at a women’s group blog I read. I have a couple of firm writing deadlines coming up – one for a workshop with real publishers who are reading and giving mini-interviews and critiques.

It’s not a convenient time for my Dad to decide to die in other words.

I am such an awful person for even thinking it, let alone writing it down. But my Dad would get it. When he was traveling back and forth from Des Moines every week to help me take care of my late husband, he confided to me that he would help as long as he was needed but he felt he was missing out on his life and the things that were important to him as a person. Not dad or a father in law. A person.

I talked with Dad this morning. It was the kind of distracted conversation I used to have with my late husband when the dementia was starting to set in for real. The voice was weak and breathy and gurgled with phlegm. My late husband finally succumbed to pneumonia. There are more painful ways to die but suffocating has to be one of the most terrifying and I am speaking from my experience watching my late husband and from my own dealings with asthma.

Once you’ve watched someone die, you can’t undo it. Erase the images. Ignore the truth. Pretend that it isn’t coming and there are things that need to be done in advance.

I took a long walk today. About 4 miles down and back from J-berg to the gymkana fields. No one was burning trash or leaves today and I didn’t encounter dogs. I have come to the sad conclusion that I can no longer run. Having just recovered from a painful bout of achilles tendonitis in both ankles, I just can’t risk damage. Power walking with the occasional jog and yoga it is. I don’t experience the same sense of freedom though and I will miss that.

And that’s all folks.