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Sunday, November 8, 2015

Your Dying Spouse 80 - Preserving Dignity

There is nothing dignified about terminal illness, sentimental and fanciful books and movies notwithstanding. It's not pretty.

I mean, really...incontinence?

Dignity comes with how we meet it, and in this, you, the caregiver, can be a huge help, because your mate wants,more than anything, to retain his or her dignity in your eyes.

You are the audience, You saw your beloved at our best...and we don;t want that memory to be replaced with something else, something that we feel is far less.

Yes, it's true that dignity is written on the heart, and in the eyes, and that you're quite capable of seeing past the mess and the weakness and the other things that don't bear mentioning.

All true, but when you're dying, there are outward things that become important, sometimes more important than they were in health.

We need you to see us, still, at the best we can be, at the best we can appear...and we need to know that you, our caregiving spouse, sees us that way.

Here's how.

  • First, treat the indignities, like incontinence or the propensity to vomit, or loss of memory, as passing incidents. Deal with them, and then forget them. Don't, whatever you do, say something like "Well, I guess you'll be needing adult diapers soon." We know that this may be coming, and we hate it.
  • Encourage independence. I need help bathing, and sometimes need help using the bathroom. For the former, my wife accepts this as a regular thing, and I can accept that; it's a safety issue. But for using the facilities, she'll ask whether I need a hand (stop laughing...well, OK, it is funny, put that way), but she doesn't press the point. If I say "I'm OK", she accepts it. But she does trust me to ask when I need the help.
  • Foster normalcy. Wearing PJs all day may seem more comfortable, but for many people it's bad for morale in the long term. If your mate's housebound, encourage him or her to wear street clothes during the day...street clothes that are in good repair. If you can't shop together, buy new clothing as needed, keyed to what he or she likes to wear.
  • Encourage active involvement with the outside world, even if the only way is by sharing your life as it goes on outside the home, and asking advice.
  • Always address your mate as 'you', as in "How are you feeling this morning?", as opposed to "How are we feeling this morning?" When you hear the we often enough, it becomes condescending.
  • If forgetfulness in conversation becomes a problem, be as patient as you can with repeated questions. I know it can be frustrating, but please, put yourself in our shoes...not being able to remember if you asked that, or not. Don't say, "You asked me that ten minutes ago!" It makes us feel terrible, something of a burden, and it's humiliating.
  • Don't change your form of address; don't suddenly adopt the diminutive of your mate's name. 'Andrew' shouldn't become 'Andy' because he's very ill; I may be dying, but I'm not reverting to childhood.
Some of this is a tall order, I know. But please try.

Because living the indignities, and realizing how some very small things can have a big effect on morale...we'd do the same for you.


  1. Great post, Andrew. A difficult one, I am sure, but so necessary. The clothing is so true, too! Praying for you and Barbara.

  2. Achingly powerful and true. Thank you for rousing my heart this morning.

  3. Maintaining one's dignity is essential.

    Reinforcing the dignity of the one cared for by the caregiver is also essential as you have stated so well. This applies to ALL areas of caregiving including caring for the aging populations and the physically/mentally/emotionally challenged individuals. Out of frustration it becomes harder to remember the basic value of human worth. We must remind ourselves of this when it gets hard to carry on. Alzheimer's disease can be one of those challenging areas. I've watched it play out in unpleasant ways. The caregiver gets exhausted.

    Pulling for you, Andrew.

  4. oh man ... good stuff here. and not just for those who are dying. dignity is a basic need we all carry. thanks, Andrew, for giving us some straight talk on doing this in ways that show honor and respect.

  5. I can relate to this in part, Andrew, because I remember those issues for my parents near the end of their lives. It always made me cringe a bit for them whenever those humiliating moments came along. It's so very important that our spouses be aware of that tender vulnerability. Thank you for being brave enough to share from your own experiences in this. Not many have that kind of courage and self-confidence, my friend, so it is something that must be spoken into and shared. We will all be there one day.

  6. These are such wise and insightful suggestions, Andrew. Like many things we don't "get", these are also common sense when you stop and think about it. Dignity is such an easy and yet illusive thing to keep hold of because people often over or under think. A slippery slope I assume. Having not yet been in a situation during which to apply these suggestions, I can't say I have a frame of reference, but your experiences are invaluable to share. Thank you! You're in my prayers.

  7. WOW! You are certainly speaking to me where the memory or the questions over and over again comes into play...I deal with that every day and some days it IS hard; but I keep trying to patiently answer or go with what he's saying over and over...

    I can see your point for sure in all of this; and your way of letting the caregivers out here know how the care receivers feel...so helpful, Andrew...so helpful...

    Funny thing about that name...my first "love" was "Andy", actually "George Andrews" with the "Andrews" being a family name...so, meeting up with he and his wife a few years ago and finding him called "Drew" was definitely something to get used to...I still want to call him "Andy"!!! High school days, you know!!!


  8. Such great insight, Andrew and things that I know I wouldn't likely think of. I tend to hover so I'd probably take charge in spots where the one I love is still quite capable. But it makes complete sense that respect, even mutual respect, wouldn't go out the window even when illness is in the picture. Thank you for sharing.