There are times when, in the course of caring for my husband, I begin to feel resentment and self-pity. The scales get out of balance with my giving all the care and him enjoying all the care. I need to feel cared for, too. At those times, it helps to review this Caregiver's Bill of Rights:

Caregiver's Bill of Rights

I have the right to take care of myself. This is not an act of
selfishness. It will give me the capability of taking better care of
my relative.

I have the right to seek help from others even though my relative
may object. I recognize the limits of my own endurance and
strength.

I have the right to maintain facets of my own life that do not
include the person I care for, just as I would if he or she were
healthy. I know that I do everything that I reasonably can for this
person, and I have the right to do some things just for myself.

I have the right to get angry, be depressed, and express other
difficult feelings occasionally.

I have the right to reject any attempts by my relative (either
conscious or unconscious) to manipulate me through guilt and/or
depression.

I have the right to receive consideration, affection, forgiveness,
and acceptance from my loved one for what I do, for as long as I
offer these qualities in return.

I have the right to take pride in what I am accomplishing and to
applaud the courage it has sometimes taken to meet the needs of
my relative.

I have the right to protect my individuality and my right to make
a life for myself that will sustain me in the time when my relative
no longer needs my full-time help.

I have the right to expect and demand that as new strides are
made in finding resources to physically and mentally impaired
persons in our country, similar strides will be made toward aiding
and supporting caregivers.

A good deal of ambivalence comes with taking care of my own needs. Maybe it's all that self-sacrificing I was programmed to do in my younger days. If I were a real saint, maybe it would have taken, but I'm not and it didn't. Frequently, I'm reminded how very unsaintly I am. I've questioned values that I took for granted and I've reached conclusions never before considered. It's not just certain connections in the stroke victim's brain that get altered, but professional, personal, and social connections, too. I've been forced to re-define our marriage and it's nothing like I ever wanted.

Am I abandoning my husband who still needs so much help? No, I could never do that and live peaceably with myself. But I am once again detaching and trying to do it in the most loving way I know how. It's not the first time, and it probably won't be the last. I get so enmeshed in him and his needs sometimes that I quickly lose sight of Cathy until she's angry or depressed about being neglected.

Then I take her on a solo flight for some much needed R&R and fight like hell not to feel guilty for enjoying myself without him. I usually find the caregiving is easier after I've concentrated on me for a little while and that alleviates the guilt that nags around the outer edges of my conscience. The scales feel balanced again until the favors I do for him far outweigh those he does for me, so then I do enough favors for myself to catch up. It's not quite as methodical as it sounds, but that's basically how it works.

Every once in a while a friend shows up who offers to do some favors for me, and it is difficult, sometimes impossible, to turn them down. It depends on what is being offered and how needy I'm feeling at the time. The hard part is not attaching more significance to these random acts of kindness than is there. Just be grateful and kind in return and try not to let this scale get unbalanced, too.

For everything there is a season...