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Terminal illness takes away a lot; first, the ability of do anything outside of work, then, the ability to be in the workforce...and finally, it takes the responsibilities that go with a shared life.
And yet, we all need work of some kind. Shakespeare recognized this when he wrote -
"If all the years were playing holidays
to sport would be as tedious as to work."
As a caregiver, one of the best things you can do is to make sure that your terminally ill spouse does have a sphere of responsibility, and 'work'; even if that's relatively minor, it should be something that he or she is expected to do. It might be dishes, or laundry, or paying the bills; but it should be theirs.
Until it can't be.
There will come when it's obvious that you have to take over, but it may not be obvious to your mate, and how do you take the work from his or her hands without crushing the spirit, even more than illness has crushed it?
Gently. Very, very gently.
First...if possible, wait to be asked. It's by far the best way, if your mate asks to be relieved of duties through the self-awareness that things have just gotten too hard.
Second...offer to take over on a one-time basis..."If you're not feeling well today, would you like me to do that for you?" Chances are that if it's more than a one-day loss of energy, you'll end up taking over by default, and it will be something of a relief to your spouse to be able to let go.
Third...trade jobs...hand over something you do that's less critical, in exchange for a must-do that is becoming beyond your loved one's capabilities. You'll know...and they'll know...what's going on. But it provides a way to save face...and saving face is critical. Lose self respect, and you lose the will to live.
Fourth...here is what you must (almost) never, ever say..."You're getting worse, and it looks like I'm going to have to take over."This is a killer, and unless it's something like bill-paying...and your spouse refuses to relinquish it even though critical bills are not being paid on time...this is something of the 'nuclear option'. Its ets a person back, hard.
Unless you can get outside help, eventually everything your spouse did as part of shared responsibility will eventually devolve onto you. Your task is to make that transition as graceful and painless as possible.
For both of you.
So very practical and insightful, Andrew. I don't know that I would've been able to see things as clearly as you've presented them here for us, without your insight and experience. I definitely think this must be handled with gentleness, sensitivity and respect at every stage. That means learning to empathize with what our mate is facing and feeling. And if I could add anything to the pot, it would be to make this an ongoing dialogue--not in a nagging or whining kind of way. But always talking about how you each are doing and what could be handled a bit differently--better. Thanks for another great post, my friend!
ReplyDeleteSuch an important thing to consider, for sure! At this point, my husband has "his" chores and I do the rest! He is incapable of the bill-paying; yet, feels he HAS TO HAVE a certain amount of money during the month...I feel too much; yet, he buys milk, bread, etc. when needed, and he puts gas in both cars. I let him have that; yet, I don't always give him the amount he requests because I am the one that knows what bills need to be paid, etc.
ReplyDeleteOne day, even "his" little chores will be mine...I know that; and he may or may not know that; but your words of wisdom on how to "take over" those chores are great words to remember.
Thank you, Andrew...