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Tuesday, May 10, 2016

Your Dying Spouse 162 - Incontinence

Did the title scare you off?

It did me, in trying to write this thing. But while talking about it's painful and embarrassing, the problem of bladder and bowel incontinence exists for many of the terminally ill.

And hence for their caregivers.

True incontinence, where there's absolutely no control, is pretty rare. Thank God.

What I'm talking about is a system that's compromised so that the timeline between the "I've gotta go!" warning and the point at which the sphincters release is maddeningly short, and by that I mean seconds, or maybe a minute.

And it does let go.

Puts one on a pretty short leash, and makes any kind of nonessential outing pretty unpleasant to contemplate.

Yes, I know about adult diapers...some people are OK with wearing them, but to some - like me - even the term is anathema. It adds humiliation to pain, and so no, I won't be coming to the party or the church service.

If your husband or wife is in this position, here are some suggestions, gleaned from experience -

  • Don't suggest adult diapers. Just don't. Your mate knows about them, and will bring up the issue him-or-herself if it's an option. (And don't offer the thought that using the things would allow 'freedom'; again, it's a very personal decision, and it's not your decision.)
  • Don't make light of it, or compare it to a time in your life when you may have had the problem. You survived; the soon-to-be-dead-dude will likely not. Comparison, even as well-intended sympathy, comes across as condescending.
  • Offer to help with a cleanup, but don't push. Your spouse may not want you to see him or her 'that way'. Respect their privacy, and what's left of dignity. It's not about you; it's about horrible, total embarrassment.
  • Some people will make light of the problem (like saying, with feeling, "Oh, crap!"). Set your response by their tone. Don't make light if your husband is weeping from the frustration, and don't make it out to be a tragedy if your wife's laughing it off.
  • Your spouse may suddenly want to do his or her own laundry. Allow that, and don't interfere, or comment. (Likewise, if you';re doing the laundry, don't comment unless you see something really bad, like large bloodstains that are otherwise unremarked.)
One more thing, and this deserves more than a bullet point...your spouse may physically withdraw, and be reluctant to touch, or be touched, far less engage in physical intimacy.

That's something you've got to respect...up to a point. Being incontinent makes one feel kind of...well, 'soiled', and a hard or unexpected hug can cause something...well, unpleasant if not entirely unexpected. And as for sex, you can well imagine.

You've got to respect boundaries, but don't fall into something of a retaliatory withdrawal. That sounds awful, but as a caregiver, you're human...and you can feel rejected.

Instead, try to imagine how you'd feel as the worst physical version of yourself, with a self-smell that never goes away, even when you've just washed.

Try to imagine what it's like to be seen as you never wanted anyone to see you, let alone the man or woman whom you wanted most in the world to impress.

And put all of that feeling, that compassion, into a gentle caress of the shoulder, a soft brushing of the hair.

Just don,t...please...make it a surprise!

If you can, please do leave a comment. I am trying to answer all, and I am failing, but please know this - I read and treasure each one.

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  1. Such a difficult subject to talk about, but I'm glad you're discussing it here, Andrew. And in such a respectful way. Having recently done prep for a colonoscopy, I experienced a few hours of feeling almost out of control, and that extremely limited experience was humbling enough, so I can't even imagine all that you're talking about. But I'm listening and hopefully learning....

    1. Lisa, this was, truly, hard to write about. But if there's any way to make it easier for others...

      Meanwhile, I jut try to stay within lunging distance of a bathroom.

  2. Andrew - An excellent treatment of something most won't touch. Thanks!

    1. Paul, thanks...and I sure understand why most won't touch it! I really felt awful, admitting, yeah, I'm incontinent...but, as they say...wait for it...s**t happens.

      Sorry. I really could not resist.