Heads around the packed room were nodding as I spoke. Many listeners were grabbing tissues from strategically placed boxes. The head bobbing had started in earnest after I said, "There are times during this long journey when you'll look at the suffering elder and think, ‘Why can't you just die quickly?'"
I followed that statement by reassuring the audience that they were perfectly normal for having such thoughts. Why would anyone want to watch someone they love suffer? Besides, everyone is worn out. The person dying, or at the end stages of a disease, is likely somewhat unaware of what is happening, if they are getting proper pain relief, but they are tired. The family that has given weeks, months, even years to the care of this person is exhausted. Mentally, physically and emotionally exhausted. They see they approaching end and often just want it over with. Again, that is simply normal thinking.
Of course, not every guilt inducing thought a caregiver has is this dramatic. Sometimes the thought is simply that the care receiver is getting spoiled. That the person could do more is he tried. And sometimes the caregiver is right. But she still feels guilty thinking this, because she is well aware that the care receiver is the one with the illness and deserves sympathy for it.
Caregivers are human beings who will have thoughts. Sometimes they aren't very nice thoughts. But, thoughts are just thoughts. You can't control what comes into your mind. How often have you had impatient thoughts about traffic not moving ahead fast enough to suit you, only to see that two cars ahead, someone has stopped to let a person in a wheelchair cross the street? Then you think to yourself, "Man, I'm a jerk!" No you're not. You are a stressed out person who made a snap judgment. When you saw the situation, you were no longer impatient. You are human.
The other kind of guilt feeling is that you never do enough. Something in you feels that you should do the impossible; that you should make this person well. Or at least make this person continually content. Here you are, charged with the care of a loved one suffering from dementia. You should be a bundle of kindness and understanding at all times, right? You should always know the right response to each mood change. You should never lose patience with the loved one after he has asked the same question 47 times in the last hour. Once again, I say, you will, because you are human.
Granted, you want to do your best to be a patient, dedicated caregiver. The right responses to each situation help you, as well as the care receiver. However, you will mess up. You will snap back after a rude comment or hurry someone you are feeding since you have so much more to do, even though you know it's not only wrong, but counterproductive. You will become exasperated when you have to change your mother's clothes one more time because she had an accident and refuses to wear incontinence protection. You will sigh from fatigue just as the person you care for is trying to communicate something important to you.
Too much of this behavior, however, is a clue that you need help with this caregiving process. You are getting overwhelmed and that is affecting your ability to be the kind of caregiver you want to be. This may be a time to read, "Decision Points: When Do You Call in Professional Caregiving Help and What Kind Do You Get?" This may be a time to call in some reinforcements.
You aren't a bad person for having thoughts you may deem unacceptable. Occasionally resenting the load you are carrying by adding full-time caregiver to your already busy life is human and normal. But when these thoughts turn into actions that could have negative effects on the care receiver, or when the thoughts come so often you wonder if you are losing your sanity, you need to get help. Look over the types of care help you can find. Go through a county or state agency if finances won't permit you to hire help. But do find support. Then drop the guilt. It's important for your care receiver and it's important for you.
Published On: July 13, 2009