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.
- 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.