When you're dying, joy can sometimes become elusive; small setbacks that you'd ordinarily shake off can become magnified, simply because there's less time to set them right, and they diminish the precious 'quality time' you have left.
The same thing goes for caregivers. Seeing someone you love fade by inches is painful, and can easily darken the days. Joy, fun, and simple satisfaction can lose their flavour, or can sometimes be shattered very suddenly...when you're laughing at a joke someone tells at work, and then you suddenly realize, "I won't be able to share these at home for very much longer."
But there's another way joy can be leached from your life...and your husband or wife can be the unwitting (or, sometimes, deliberately-acting) culprit.
A losing fight for life changes one's perspective. When the physical challenges become harder by the week, focus changes from an outward acceptance and enjoyment for what's 'fun' to things that have a deeper and more visceral meaning. Spending time on finding a 'kicky' outfit goes from a cool way to spend time to a waste of time.
And when one's looking ahead to a night of semi-sleep, broken by pain that makes it impossible to do more than just endure it, it's very hard to get excited about a football game. The team loyalties that seemed important, once upon a time, are now a silly emotional tie to what is, in the end, a very big business.
That change in feelings is real, but it's unfair to impose them on one's caregiving spouse, yet the dying do it every day, through words and (perhaps more often) body language. The Super Bowl party is met with badly-disguised rolled eyes, and a lukewarm participation. The shopping trip, which could be a wonderful chance to spend time together, is rejected in progress by sighs and "Well, I'll just wait here for you", even when the physical need to rest isn't really there.
And then there's deliberate sabotage, arising from bitterness...and you, the caregiver, are frequently the only available target upon which to vent the wrath that arises from circumstance. It's unfair, and it's inexcusable. Dying is not entitlement.
I'll give an example from...well, yesterday, of which I'm ashamed. Please bear with me.
barbara was watching "The Voice", one of the few television shows she tries to follow. She once did a lot of singing in church, but I have not heard her sing in a long, long time.
The songs thatwere performed grated on me; though I was in a different room, I could still hear them, and I found "You're No Good" and "The Way You Look Tonight" to be the height of frivolity, and the nadir of silliness. I'm in severe pain, and yesterday afternoon had to run an improvised blood-expanding IV to stay conscious. Ihad been bleeding a lot.
When the show was over, I asked Barbara, in the guise of an 'academic question', why she liked those songs. But my motive was, shamefully, base. I wanted to vent my anger against a world that I saw moving on in tinsel and pumped up emotion while I fought a battle that I'm losing, and that is often very lonely.
Barbara's answer was direct, and to the point. "I don't want to try to explain, because then I won't enjoy them any more."
That was the perfect response, and it neatly and deservedly put me in my place. I was trying to take something from her, to place her in the dark place in which I increasingly have to live.
And that, dear caregiver, is what you have to do. You have a life; you will have a life after your husband or wife dies, and he or she does not have the right to consciously or subconsciously diminish the enjoyment that you have, or for which you have potential.
You can't help a drowning person by letting yourself be pulled underwater. Sometimes you ave to let them drown, because being lost yourself is the only other option.Yes, you can be encouraging and generous...but thathas to be accepted, and in this situation, that often just doesn't happen.
It's not selfish; it's just the acknowledgement of different roles. You will still have something to contribute after the eyes are thumber closed and the body's covered with a sheet, and you owe it to yourself, and those around you, not to let your best efforts - which are enhanced by the enjoyment of life - be diminished by 'misery loves company' placed into full and squalid action.
What do you think? Can you see another way?
This was, again, a very hard post to write, and rather painful, because I have had to recognize that I damaged, in a small way, the time that Barbara and I still have together. My words can't be called back, and even my development of a genuine enjoyment in the music I criticized will be seen as suspect, and condescension. This can't be fixed, and for that I am both sorrym and ashamed.
I will try to respond to comments quickly, but things are getting tougher bythe week, so please...be patient. I truly value your comments, and your presence here.