"I've noticed a few things about caregivers and those they help. Most work hard and pretend to be stronger than they really feel. Almost all caregivers feel lonely and misunderstood less important than the people they take care of. The mantra I frequently hear is, 'How can I complain? Look at what my loved one is going through!' And being a caretaker also means feeling guilty, helpless, and frustrated. It always seems that we are not doing enough to diminish our loved ones' suffering.
"And caregiving is usually thrust on us by chance. One day we are living our lives, and the next day everything seems to be in free fall and we are responsible for holding things together. This job becomes ours whether the person we are caring for is someone we adore or someone with whom we've had a conflicted relationship.
"Many caregivers are angry. Makes sense to me! Anyone who is exhausted is likely to become angry. Anyone who is responsible for a job they feel they cannot do will get angry. Many get angry at those they take care of. Many get angry because their support system is not as responsive as they need it to be. And many are angry because they feel the life they had yesterday has been stolen.
"The person being cared for, whether a patient or a loved one, is often angry, too. After my accident, I hated being taken care of even though I needed it. And, secretly, I wanted people to take even better care of me. I wanted them to know how scared I felt and wanted them to hold me. I wanted them to know how overwhelmed I felt and I longed to hear the words 'You don't have to worry about anything ever again. I'll take care of your life for you' the same words that small children long to hear when they feel scared.
"What I hated was being taken care of. It robbed me of my sense of independence and worth. Sometimes, it was more hurtful than reassuring to be taken care of by people I loved. That's because I knew that, more often than not, caretaking was taking something out of them. I felt guilty for being so dependent. And the more dependent I was, the worse I felt about myself.
"I would say to my wife, 'I'm okay. Go out to lunch with your friends or go away for the weekend. I'll be fine.' But I was lying, and she knew it. So she also lied by responding, 'No, that's okay. I'm really fine and I don't need to get away.' So here were two people who had gone through terrible adversity, both lying to each other out of love! And both angry at everything that had brought them to this situation.
"Anger can get caregivers to work harder and to move mountains. Anger has helped me pursue justice in an unjust health-care system. But anger can also be poison. Whether it is justified or not, over time, anger turns into bitterness and righteous indignation, and then we become poisoned with our own emotions. The poison of unresolved anger takes an even greater toll on the body than the job of caretaker.
"Here's the problem. To have a chronic illness or be traumatized any other way is to feel alone and isolated in the world. And to be a caregiver is to have those exact same feelings. So, now we have two people who love each other and both feel alone, and neither one is open and honest with the other, making the alienation feel so much worse. How many tears we must have shed behind each other's backs!
"What can be done?
"When caregivers who are feeling burned out ask me that question, I first tell them about many wonderful organizations that provide respite care and support groups for caregivers. Organizations like the Well Spouse Foundation do a terrific job.
"But there is another source of care for caregivers. And it can be life sustaining. If you are taking care of me and you love me, ask me what it's like for me to be ill and to be taken care of. And then just listen. And then this part is very important tell me what all of this is like for you. What are your losses and fears? Tell me about all of your mixed feelings and hopefully I'll be able to listen, hold your hand, smile, and feel deeply about your life. That will help you. That will help me.
"If we wear kid gloves when interacting with one another, we will never get to make genuine contact with the people we love and need the most. When I look back, how I wish Sandy and I could have held each other and just wept about the terrible event in our lives instead of protecting each other."