Name: margalit
Location: Massachusetts, United States Professional writer, educational advocate, opinionated ultra liberal mother of 18 year old twins, living life in the slow lane due to hypertrophic cardiomyopathy, congestive heart failure, and diabetes.

email: margalitc at yahoo dot com

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Wednesday, November 26, 2008

Talking Turkey About Death

My blogless friend Ora has asked to for a space to blog this Talking End of Life post. As a cancer survivor and the wife of a man dying of stage 4 colon cancer, I know this is a HUGE issue for Ora. So please read and give her support.

I saw an article this morning in the Boston Globe that really got me thinking. You’ve listened while Margalit talked about me and my kids and my husband with Stage IV rectal cancer and all of our marital problems. So this article really got to me. (Ed. Note... I've never really talked about the marriage part of the equation here, but it's bad. VERY bad.)

I’m totally conflicted. I guess that is the place many people are in about a loved one dying, but my problem is that I don’t love him anymore. I care for him as one human being to another, but he’s done and said so many nasty things to me over the years that I actually had filed for divorce this past summer, while the tumors were stable. So while the ethical side in me doesn’t want him to die, the “I don’t care anymore” side says to hurry up and die already. Eek. This is the definition of conflicted.

In a sidebar to the article, the Globe showed questions from Engage with Grace which I’ll answer below. But the whole point was that the caregiver should have this discussion with the patient. Hubbie and I have had pieces of this in the past, but since he is mostly in denial about dying, it’s hard to pull it all together. Plus, he has communication issues that make it impossible to have a conversation with him.

The questions are:

  • On a scale of 1 to 5, where does the patient fall on this continuum? 1 is :let me die in my own bed with any medical intervention and 5 is: don’t give up on me no matter what. Try any proven and unproven intervention possible.
  • If there were a choice, do you prefer to die at home? Or in a hospital?
  • Could a loved one correctly describe how you’d like to be treated? Yes or no. Yes
  • Is there someone you trust whom you’ve appointed to advocate on your behalf when the time is near? Yes or no. Yes
  • Have you completed any of the following: written a living will, appointed a healthcare power of attorney or completed an advanced directive? Yes or no. Yes

One and two are the hard ones for me. Right now he is in the "do anything that the doctor can think of" category. This is not like traveling to Mexico for some quack’s peach pits or halfway around the world for something else untested, but it does include clinical trials (those that will take him with brain metastases) and whatever combinations that the oncologist can think of (and that we can get the insurance company to pay for). We do both agree (at least he didn’t disagree) that we can’t be beggaring the rest of the family for some small percentage likelihood of grabbing an additional month or two. But…. he’s not willing to stop trying, and we’ve run out of things to try. And he doesn't listen to the doctor, nor does he process what the doctors tell him. So I fear what is next.

I am absolutely positive that he wants to dies at home. I am equally positive that it’s not something that I want to deal with, especially with my daughter in the home. His dad died from the same disease and he died at home, with hospice services in the house (and with a wife that was always flitting off to do something else, but that’s a whole ’nother story!) So hubbie wants to go just like dear old dad (and I did love his dad!)

I’ve been a support group for caregivers of cancer patients for many, many years now. I’ve seen how many caregivers try to take care of end-of-life issues at home. In the “nicest” of cases, it’s not too bad. But do you really want your last days with someone (even if you still loved them) to be spent changed diapers and taking care of medical matters? And if it’s a worse problem, the home caregiver is NOT a skilled nurse who knows how to handle all of the medical concerns, even if the insurance companies these days are dumping more and more of the care onto the family.

Out-of-house hospice is a rare service, but it absolutely is the best way to go, both for the patient and for the caregiver. The patient gets the services that s/he needs and the caregiver can focus on the emotional care, rather than get totally worn out by the physical care.

But this is the part that we haven’t discussed. Why? Because he’ll just throw back at me that I was divorcing him and want him gone. So now we’ve come full circle. I do want him gone, but I don’t. But I’m certain that it’s gonna happen within the next year.

Ed comment: Having her husband at home is extremely stressful and difficult when he's well, and he's declining fairly rapidly. Her husband isn't the nicest guy (I'm being polite) and he blames EVERYTHING on Ora. Her stress level is through the roof, she has other problems she has to worry about, a full time job with a lot of stress right now, and one kid with severe special needs that she is solely responsible for. Plus a teenage daughter named Judy Attitudy (thank you Dr Phil... I love that expression!) Caring for a dying spouse that is mean, that she can barely be in the same room with, and who would make sure that his dying would be HER fault, too, just isn't fair. There is only so much one person can take. She's had her fill and then some.

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Blogger Daisy said...

My love to Ora, and my prayers, too. When my dad died, my mother felt relief -- and guilt for feeling relief. They had divorced many years earlier, so I can only imagine how awful it is for Ora.
My hope is that she will have the strength and the support she needs.

26/11/08 3:24 PM  
OpenID 12ontheinside said...

Geez, my heart goes out to your friend. That is just a horrible situation for her to be in. I hope she does not let guilt make her grief (when the time comes) worse than it has to be.

26/11/08 11:18 PM  

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