The Crushing Weight of Caregiver Guilt.
This is the post I wrote several days ago. I’m posting it today with an update on what’s happening at our house. I met with four different people over the last two days discussing options for my mom. Today (Wednesday) we met with the Palliative Care Manager. My dad, my husband, our caregiver and I all went to the meeting. We all had our say and opportunity to ask questions. Interestingly, the Care Manager said she thought Mom had so much support it was obscuring the gravity of her medical diagnosis. I’m not really sure what she meant. Apparently, we are extending her life, not allowing her to die because we keep taking care of her? I think Mom’s probably in good condition because we take care of her (the nurses kept commenting on how perfect her skin was–we lotion and potion and keep her very clean) but I think God knows the days of our life. When her time comes I don’t think anything we do will keep her here. We just want her to be comfortable and enjoy the days she has. So that being said, we signed the Hospice papers and brought her home today officially on Hospice. It was a long, hard day. Which brings me right into today’s topic–guilt.
Guilt and Caregiving Go Hand-in-Hand.
Caregiver guilt is crippling and universal. It is one of the laments I hear expressed the most when talking with other caregivers. There are so many situations that bring on guilt for caregivers.
Some examples I have heard:
- “I feel guilty when my mom calls me for the fourth time in one morning and I quit answering the phone.”
- “My husband, who is so sick already, had a heart attack. Why didn’t I see the signs?”
- “I wish my father would sleep through the night just once! I’m so tired. When I arrive at his bedside, he can’t remember why he called.” (I can relate to this–my mom woke me up early one morning last week to tell me the chickens were squawking. What she should do? Anytime after daylight, chickens make noise ALL DAY LONG. There was nothing she could or needed to do. I’ve realized often when she gets restless, she needs the bathroom or is uncomfortable. If I take her to the bathroom or change her position, she’ll go back to sleep.)
- “I hate seeing my mother suffer like this. She isn’t even the same person. I feel so guilty but I wish she would just go to sleep one night and not wake up, then I feel guilty for thinking it.”
- “I feel like I’ve lost my life and I’m not sure I’ll get it back. I feel so resentful about it. Then I feel guilty for being resentful.”
- ” I spend so much time taking care of my parents, I’m missing out on my children’s activities. I missed my daughter’s play because I had to take Dad to the doctor. I’m a bad mom and a bad daughter.”
- “It’s costing so much to care for my parents we are using our own retirement money.”
Real Guilt vs. False Guilt
Guilt isn’t always a bad thing. If we’ve done something wrong, we should feel guilty and make it right. I think those of us who are caregivers tend towards an overdeveloped sense of duty, think we are in control of matters we aren’t, and assume blame for things that aren’t our fault.
We beat ourselves up over 1) What I should have done, 2) What I shouldn’t have done, 3) Having feelings I’m ashamed of, 4) Things I have no control over but feel responsible for anyway.
I have to give my face a mental slap sometimes, step back and think about what the real problem is. My parents have health issues–that’s not my fault. I don’t always make the right decisions–I’m not infallible. I do the best I can. I can’t help how I feel but I can choose how I behave.
I’ve heard, you can’t solve a problem you haven’t identified. To that end, I think writing down what’s bugging us might be a good exercise.
My mom is sick–I feel sad and resentful that I have to take care of her–I can’t control her health, but maybe I can ask Sally to meet me for lunch while someone stays with Mom. Maybe I’ll come back with a better attitude and perspective after a break.
My dad is in pain—I feel upset when my dad hurts, guilty I can’t relieve it—I can’t make his pain go away but I can call his doctor to ask for suggestions for pain relief.
My mom fell (or got an infection, or had a stroke)–I feel guilty I didn’t see it coming–God didn’t put me in control of the Universe (thank goodness), it’s silly to accept blame for something out of my control. I need to stop accepting blame for things I can’t change.
If we name the problem, acknowledge our feelings, decide, hey, I can’t fix that, or take steps toward a solution, we’re going in a positive direction. If we don’t, we run the risk of living in Negativity-ville. It’s a bad place to live and no one wants you for a neighbor.
Caregiving is hard, emotionally draining work. It just is–that’s the truth. We will experience guilt because we’re fallible humans. We will make mistakes. At the end of the day, we do our best and need to look at ourselves in the mirror and say, “I’m doing a good job. Go me! I’m giving the best I have and that’s not shabby.”
Have a great, guilt-free, caregiving day,
Extra reading for overachievers: