Significant other in denial of Terminal Prostate Cancer.

My dear wife provides the best support anyone could ask for but the one area that we can't discuss is the end game of Terminal Prostate Cancer.

I fully intend to be around for a while, but I know that at some point I could become CRPC and this disease could kill me. Today other than the medication side effects I'm asymptomatic and our quality of life is great.

So the problem for me is preparing for the worse, I want to ensure she is ready financially and with the many other issues like downsizing, reducing our day to day work loads (10 acre horse farm). Getting her closer to family and what seem like a million other small things that we need to do to just be ready for the worse. I have always been a planner, fixer so I know some of this is my problem but she will not even discuss it. To her it's too emotional and not something she wants to accept as a possibility.

Any advice? Should I just let it go, do as much as I can on my own, wait until we see a rising PSA and try again, get some counseling? It's on my mind daily, need others thoughts that may have experienced something similar or any wives that can help me understand the best approach?

Thanks

For people who are going to die from cancer, Being Mortal had one of the most important passages I've ever read (and I say this from the perspective of having endured the experience of going hand-in-hand with my first wife through the steps that eventually led to her cancer death):

“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”

PS, as so many have pointed out, we should be in the process of living, not dying. Death will occur, but until then we should spend our time positively living. And that should include planning for future activities including our passing, but it should be more detail work.

What Jack said.

I've been discussing with my wife our next step, downsizes, and planning for retirement.

but at the same time there are any number of things that might kill me right now. My wife doesn't like to discuss that. Since I do most the long term financial planning (my wife does the day to day bill paying and bookkeeping), I worked with our financial advisor and lawyer to have a plan in place in case I suddenly drop dead. I keep it in a blue binder in the safe. The conversation with my wife was something like, "If I get hit by a bus and die, get the blue binder - there's a plan there with all the info you'll need."

She doesn't like that because it does touch on things that are just too emotional to discuss. But one day not too long ago I took a little fall and that looked worse than it was. Looking me on the ground she said, "Are you all right? or do I need to get the blue binder?"

It's a difficult thing to navigate, but pick on one thing she will talk about and go slow.

Andrew

My wife and I talk openly and usually pretty dispassionately about my PCa, but there are limits. She's tough, practical--spent a number of years as a hospice volunteer. She knows, but doesn't like to be reminded, that with or without my PCa she's likely to outlive me by a decade or more. Every once in a while she gets overly worried about the future, which usually means it's time to both sit down at my computer and review our income, expenses, investments, etc., which usually restores perspective.

Also, for both of our sakes as we get on in years, we're putting a fair amount of money and effort into our house over a couple of years -- e.g., we've had chronic problems with ice dams and were over-due for a new roof. We just put on a new aluminum-shingle roof instead of asphalt. It was a lot more money but it should eliminate the ice dam problem and the roof will long outlast both of us. We had a new heating system and tankless water heater put in a few years ago. Next year we'll have the house painted and have some of the cedar shingles and a few clapboards replaced. The goal is to have all of the likely major maintenance work done and paid for within the next 3 years or so.

Aside from that I've told her I've begun assembling a few documents with details about how to find my logon information for all of the ton of things that require id and password these days. This is the bridge to far - more than she wants to talk about in detail. I've parked a cheat sheet in an obvious place that I keep updated with dates how-to info on domain name renewals, etc. (we - meaning I - maintain several web domains for several projects we are both involved in). And keep a printout in our fire safe with our wills and healthcare proxies.

Still to-do is making some kind of list of all the household and car maintenance info that I take care of. Not the least of which is the ever-growing number of networked devices, home network, central back-up drive, VOIP telephone service, recovery from computer crash issues etc., which she has solved for many years by asking me to fix it -- even for things I've shown her how to fix many times before. I know there are things I can't control after I'm gone. But I'd like to know my wife isn't left communicating by post cards written by candlelight.
Jim

George_ said...
Once you are castration-resistant you will continue to live for one to two years. Sufficient time to make plans for the end. If your wife does not want to make plans now, there is no need to do so yet.

Two minor quibbles. First the good news. I think one to two year survival after MCRPC is on the low side these days. Three to four years is probably more up-to-date. See link below.

My second quibble is the bad news. Just because we may have an estimate of our time before prostate cancer gets us doesn't mean something else won't get us first. .

/www.sciencedirect.com/science/article/pii/S030228381201559X

You are doing the right thing and she will appreciate it. My wife's best friend's husband died of lung cancer after a year of treatment. She didn't even have his bank account numbers and had to hire a forensic accountant to find the accounts to pay bills. They were both in denial and created a large mess that took years to unravel.

I love the energy of posts like the one above...folks read...like...dream...then slump as they eat pie in the sky...and I think..."what fools these mortals be?...in a nice way...smiley face...lennon shades sans a smirk

I became castration resistant in April 2017. On Zytiga now. It has stared to trend upward, but I do not expect to move to a different therapy until 4/19. So that's my two years. Plenty of options left. I find it unfortunate that we continue to use old research information in the life expectancy game without considering when the studies were done. It appears that with the ongoing influx of new treatment methodologies, these life expectancy studies are a snap shop of the past, not the future.

When I was first diagnosed with metastatic PC, I had the life expectancy conversation with my onc. The purpose was not to put an end date on my life (11/20/18), but to plan for my family's future. With his input and after discussions with my bride and my financial planner, we started planning my future with a five year time frame for financial analysis.At that time I had a daughter in Middle and one in High school and now they are both in college. I plan to see them graduate, have careers, get married and have children. That's my plan for my life. However my financial plan for my future is different.

I am still planning on a five year basis, after additional input from the oncologist. This is not everyone's path, just mine.

I recommend you speak with your doctors, review your financials, speak with your significant other and then plan financially accordingly.

I urge you all to keep up the battle, crmPC is not a death sentence. It is just part of life's journey.

Mike (dba kmclark1)

Thanks for the book referral, Normal - I just ordered it.
I will read it - not to fill myself with dread of the inevitable, but to get myself into a more centered, positive attitude toward it. It took me a while after learning I had PCa to work through the mortality of it, and after failed SRT an even sooner eventuality. I find for myself, I need to work through these things and then I can move forward without dwelling and brooding, and planning and living life becomes easier. It is practical to plan for the well-being of your loved ones, whether you will die tomorrow or in 30 years, and having your affairs in order is paramount. My father needed to do a better job of expressing his intentions with his property before he started suffering from dementia and everything got so botched up upon his death.

If you know that your loved one is having a lot of emotional stress about the subject, just manage as much of it as you can by yourself, perhaps learning of her desires surreptitiously. I agree, she will appreciate that you planned properly.
Jeff