Question: “I am a caregiver for my mother who has dementia. The stress of caring for her sometimes makes me feel like I can’t or don’t want to do things for her. The guilt of these feelings is overwhelming to me and I feel like such a bad person.”

Answer: Recently I experienced this same feeling of guilt. My mother, who also has Alzheimer’s disease, will call me when something important is on her mind. She lost a brother-in-law and wanted to call me to let me know that my uncle had passed away. We talked for a short period of time and then said “I love you” and hung up. Not five minutes passed and the phone rang. It was my mother calling to let me know that my uncle had passed away, again. As I have become used to having to act as though I was hearing things for the first time with my mom, we repeated the same conversation we had just had from the first phone conversation. Again, we said “I love you” and hung up. Another few minutes (maybe ten, this time) went by and my phone rang again. I looked at the caller ID and saw it was my mother calling again. I knew she was calling to tell me about my uncle and for a brief moment I hesitated to pick up the phone, struggling with my own inner voice telling me to let the phone ring and let it go to the voicemail. But I could not bear thinking about my mom on the other side of the phone feeling the loss of her brother-in-law and needing to talk to me and not realizing that she had spoken to me twice in less than 15 minutes. So, I picked up the phone and cheerily answered “Hi, mom” like it was the first time I had spoken to her that day. As I predicted, she began to tell me about the loss of my uncle and again after the repeated conversation we said “I love you” and hung up. I answered the phone two more times before the calls stopped. I think they stopped because my dad took my mom to eat dinner and then the loss of her brother-in-law slipped from her mind. The temptation to not answer the calls from my mom was so strong, but the guilt I felt for even considering that option was more than I could bear, so I kept answering the phone until the phone no longer rang.

I have learned that guilt has a purpose in life. If we are mean, we should feel guilty. If we owe someone an apology, we should be big enough to do so. But guilt is a complicated emotion. We take on the expectations of our culture, our religion, our family. And then we take on the expectations of our toughest critics: ourselves. That little voice in our head tells us we are not doing this caregiving thing well enough. If we were “good” people, we’d just keep answering the phone endlessly until mom found something else to do.

As caregivers, we need to get used to feeling guilt occasionally, typical caregiver guilt feelings. You never will do it all so well that everyone is happy. You have to remember that you, too, are part of the equation. Talking to other caregivers helps us with our own feelings of guilt. It allows us to know that many others share this same feeling. Attending a caregiver support group can help us to deal with feelings of guilt. There are many ways to attend a support group: in-person, via the Internet chat groups, or monthly phone support groups. When people feel safe, as they often do in a group or even chatting with another caregiver, they let down their guard. They can admit that they do the same thing. Sharing your feelings with others who have “walked in your shoes” can be the best thing you can do to help remove or at least limit the amount of guilt you feel as a caregiver. Just remember, feeling guilt does not mean you do not love the person you are caring for, so don’t be quite so hard on yourself!

For more information on the Office for Aging’s Caregiver Program, contact our NY Connects Helpline at 753-4582. Have a question? Want to share your story? Email Chris at Cheronic@co.chautauqua.ny.us