dealing with a terminally ill spouse

John Edwards Healthcare Forum

For some reason, the hot rumor of the day is that former Democratic presidential hopeful, John Edwards,  proposed to Rielle Hunter, the woman he had an affair with during the 2008 election campaign. He allegedly popped the question over the Christmas holidays – which incidentally followed hard on the heels of his estranged wife Elizabeth’s slow death from cancer.

It might be a good time to point out that Edwards and Hunter share a two-year old daughter from their liaison and that Edwards and his wife had been separated for some time before her death. Whatever the state of their relationship may have been, she did allow him back in her house during her final days for the sake of the three children – two of them quite young.

The other day, the press made a semi-big-purely speculative-to-do over the fact that Elizabeth didn’t mention her almost former husband in her will.

Ah-ha! They crowed. She gave John the big FUCK YOU, YOU CHEATING ON ME WHILE I DIE SLOWLY BASTARD!!

To which I say – huh? Who includes her soon-to-be ex-husband in her will? And kudos to her*, by the way, for jumping on the will revision so quickly. Most Americans with children don’t even have a will let alone think to revise it when their circumstances change.

But there was no reason for her to include him unless he was in need of funding to support their children and, clearly, he isn’t.

The world is so keen on retribution. As if going from “golden boy” to has-been probably hasn’t shattered enough someone who’s spent his life being praised, gloried and handed goodies that most of us can’t even begin to imagine. Attention-whores on his wave-length don’t function on the same “any publicity is good” level that the Snooki’s and Lindsay Lohan’s of the world do.

In any case, using her will, or their children, to strike out at him wouldn’t have been worthy of praise. Only stunted, selfish people make pawns of their kids, and I applaud her for not being like most people in this regard.

But much more, it seems, will be made of whatever Edwards decides to do about his relationship with Hunter. As he is kind of in ambiguous widower territory – being separated and a cheater and already a media pariah – his future actions are sure to be a series of lose-lose-lose.

Even if he were to don sackcloth and smear his exposed flesh with ashes to make a knee-scraping pilgrimage to whatever passes for a holy place in his world, the public will still find his actions wanting.

That’s to be expected when one has lied to and humiliated his family, friends and supporters. But though his douche baggery is plain in my opinion, I am not a bit surprised by what he did.

Factor out the reality that men in power positions often succumb to the temptation that they are “all that ” and “entitled”, he was the spouse of  someone who was terminally ill. Having been in those shoes, I can say that it changes the relationship and sometimes the people involved.

My experience is coloured by the fact that my late husband also had dementia, and our not being able to connect on a mental and spiritual level was very isolating for me. I shouldered all the burden for decisions on every conceivable level and I often resented the fact that he wasn’t “available” to bounce off anything of import. But that aside, when you suddenly find yourself more and more caretaker and less and less partners that is a serious relationship imbalance. Add to that the fact that very often, the well-spouse is treated by others as someone whose problems are not serious enough – in comparison to the ill-spouse – to be worthy of empathy, sympathy or even acknowledging, well, disaster recipes have started with fewer ingredients.

Elizabeth’s cancer went super-nova during the 2008 Democratic primaries. Managing a terminal illness and running for office can’t be all that compatible – though the two swore they were up to it. We all think we are up to it.

Hubris is a universal affliction of those stricken and their loved ones. It’s an odd warrior mentality coupled with high school team boosterism. A weird American thing? North American thing?

When the news of his affair with the obligatory “love child” broke, I shrugged. Caretaking spouse cheats. There is no news in this. When one knows that his/her widowhood is inevitable thoughts of the future creep in. They just do though no one would admit to that out loud. Some people will act out and on those thoughts.

As Will deteriorated, all I had left was a choice between living in my memories or planning for the future. I chose to spend most of my inner-space time on the future because the past just seemed like some sort of hell dimension that pulled me towards self-pity and pointless mourning. I did think a lot about whether I would fall in love again someday and towards the very end – when it looked like he might rally and live a while longer in his vegetative state – I began to wonder if I could put my own needs on hold for another year.

It’s not that I had plans to take out an ad on Craigslist or put up a profile on, but I’d been wandering about the world obviously alone for nearly two years and men were beginning to take notice. And I noticed them noticing.

In the end though, Will had little time left. Just a month and not long into 2006, I was really a widow instead of just sort of one.

But I can understand where men like John Edwards or Terry Schiavo’s husband might have been in their thought processes because I think most people with partners who are dying have let themselves, at the very least, think about loving again.

However, Edwards’ reality is one of a barely married guy who hadn’t been with his wife in a couple of years and was involved with someone else when she died. It’s not heinous that he might be thinking about remarriage because he probably already was.

It doesn’t diminish his grief, which is likely considerable. He and Elizabeth were married a long time and there are children and history involved. He might be a douche, but it doesn’t preclude genuine feelings of loss and regret.

But it doesn’t mean that he won’t move on quickly. Men, generally, and some women, move on quickly. I don’t have patience with folks who are appalled by this because mostly, the outrage centers on artificial etiquette rules and their own personal preferences that refuse to allow the widowed person to be the best judge of their own best interest.

The children though? What of them?

Children have always been appendages of the adult lives they are attached to. They have never had input and that’s probably best. Adults who run their families by majority rule based on the assumption that children are wise and mature as opposed to self-interested, autocratic know-nothings deserve any misery that results, and that includes being saddled one day with adult children who will rule their lives like Russian oligarchs.

I wouldn’t be at all surprised if the rumors pan out, and so what if they do? It’s hardly anyone’s business outside the immediate Edwards family. If people can’t offer congratulations on the heels of their condolences, they aren’t worth having in your life, in my opinion.

*I am not generally an admirer of Elizabeth Edwards. I feel she got off way to easy for her part in covering up his affair during the primaries. She went out and stumped for him, knowing he was a liar and that his participation in the Democratic bid that year – in any way – could have cost the Dems the White House. Can you imagine Pres. McCain right now?

Sundays are lazy. None of that scrambling to your choice of worship theatres for us. Late rising, leisurely breakfast – never empty tea cups and conversation defines the morning for Rob and me.

As we usually do, we share information gleaned over the last several days that hadn’t already been featured as a topic of interest in our conversations. We are news junkies. I mostly Internet and he a combination of the web and talk radio.

Today I brought up a Business Week article by Amanda Bennett where she details the financial end of her husband’s seven-year battle with kidney cancer. It cost $618, 616 to prolong his life with 2/3rds of that expense settling in the last 24 months – when virtually everything that took place, did nothing.

Two things struck me about Bennett’s quite well-written article:

1) She admits that she was unaware of the true cost of her husband’s illness in terms of dollars because their insurance coverage really only presented them with bills for co-pays. It made it seem like a bargain when looking only at their out-of-pocket.

2) Even knowing that the last leg of her husband’s illness – in terms of treatments tried – was a waste of time that probably diminished his quality of life – she wouldn’t change a thing if she could do it again.

Oh, and just as an aside, she writes about dumping an opened bottle of one of the potent cancer drugs he was taking down the bathroom drain after he died. WTF?? Seriously? So wrong. Where was hospice? Obviously not doing their job.

Rob and I come to the terminal illness things from different perspectives – kinda. His wife was able to make her own decisions whereas my husband was mentally incapacitated and all decision-making fell on me. There was a tiny glimmer of hope for Shelley. Will never had a chance regardless.

So Rob can play devil’s advocate to my hard-earned position on illnesses that are inevitably terminal. What do I think is terminal? Anything where the odds are fifty-fifty or worse. North American mindset dictates fight no matter what it costs in terms of money and the emotional well-being of your loved ones, but I think you have to take into account the long-term toll. If you love your spouse and kids, how can you do otherwise?

Of course, I am of the belief that death is not evil, unfair and frightening – which is how it is regarded in the West. Death is. Like life is. I exist in either mode though I am beginning to wonder about what constitutes life really. If I always exist then am I not technically always alive albeit sometimes not corporeally?

Rob and I have some heavy Sunday morning brekkie discussions.

He doesn’t like to show his cards much on this. Shelley fought tooth and nail in the face of extremely bleak odds. A realistic person might say that she never stood a chance at all really. I would not want to say that perhaps her time would have been better spent traveling the world with her husband and girls and making the most of what was left. There is/should be choice.

Will wanted to fight. He didn’t understand that there was nothing to fight with. The only option – bone marrow transplant – would have just killed him sooner or left him as mentally/physically ravaged as he was just before he died.

I was selfish in the eyes of his family and friends because I looked closely at the odds and the long-term and decided that sacrificing the present and the future wasn’t the best option for Dee and I. Will would die no matter what. What was left for me to decide was how much physical hell I would let the medical profession put him through and how much of my life and Dee’s life I was willing to trash in the process. I decided – not much. The whole thing was lose-lose and it was up to me to minimize damage as much as possible.

Had we discovered his illnesses even a year earlier, Will would have decided otherwise. He’d have opted to risk the early death and even the mental and physical disabilities to stay alive. To be with me. To be at least sort of around for Dee. The fact that this would have strained me – even more because he would still be alive and in my care as I type this – wouldn’t have mattered to anyone but me. Wedding vows have hidden consequences.

But it would have been his decision. I wouldn’t have influenced him even if I knew the cost in full.

“I hope, ” I told Rob, “that if I were to ever be in a place where death was mostly likely that I would base my decision on what to do next on what would be best in the long-term for you and the girls.”

I don’t know if I am that strong at present, but I am working on it.