One of the most difficult things I have ever had to do was to tell my mother that we were moving her to a nursing home.
For my entire life, my mother had made it very clear to me that she never wanted to “end up” in a nursing home. I promised her that I would not let that happen and that she could stay with us until she died. In my mother’s 95th year, she fell, was hospitalized and declined rapidly. We sat vigil on several occasions when the doctors told us her death was imminent. When nothing more could be done, we brought her home to die.
After several months, things progressively got worse and the nurses felt that her physical needs could best be addressed by transferring her to a nursing home. I immediately broke into tears and the guilt set in. I knew it was the right thing to do—but how could I do that to my mother? It took me days to get up enough courage to tell her. At that point, my mother was in such a state of decline that I am really not sure how much she was aware of what was going on around her; but that did not diminish my guilt.
My story is not unusual, nor is the guilt that I felt. Unfortunately, guilt is a part of caregiving, particularly when you have to make a decision that you know is against the wishes of your loved one. Once in a nursing home, our pain is often escalated by our loved ones begging and pleading to be taken home. Each visit can become a nightmare of pain and suffering for you both.
Taking care of someone who is dying can be a Herculean task. Being a caregiver to an elderly parent, working full time, and raising a family are almost impossible tasks to juggle. Even if you do not work outside the home, it is still a daunting challenge to meet all the demands placed on you. Hiring caregivers to help ease the situation can also be fraught with its own set of problems that can be more stressful than doing it yourself. Additionally, there is also the expense involved that many cannot afford.
Recognizing the enormity of the tasks in front of us, all we can do is to try our best. We cannot possibly do it all, even though we may try. We feel over-responsible, out of control, and helpless at the same time. The result is experiencing caregiver burnout and resentment. Even if we could do it all, we would still find something to feel guilty about. It just goes with the territory. We all make promises with the best of intentions, but events and situations change and we cannot keep our word. We feel we have failed. We berate and blame ourselves for being human and for all those things we “should have” or “could have" done.
For the majority of us, the guilt we feel is unjustified. We have to remember that even though we feel guilty, it does not mean that we are. We are faced with decisions that we do not like or want to make but we have to do something that is in the best interest of all involved. In addition to guilt, there are myriad other emotions we live with at this time: angst, worry, sadness, anger, frustration, and resentment, to name a few. We cry a lot and become short tempered. We experience all these feelings even before our loved one has died. What are we to do? Below are some suggestions you might find helpful:
- Acknowledge that you feel guilty and accept that feeling guilt is a normal part of the dying process for caregivers.
- Recognize that you are only human and not some superhero who can do it all.
- Be careful what you promise your loved one.
- Be nicer to yourself. Meet some of your own needs for a change. Take the time to nourish and replenish yourself.
- Write down your thoughts and feelings.
- Talk to friends, family, or other caregivers.
- Talk to your loved one as if they are sitting across from you in a room. Tell them about your struggle with guilt and imagine what they would say. Most of our parents or spouses would not want us to be in so much pain and distress.
- If problems continue, seek out a mental health professional. Carrying guilt around can have negative consequences for your physical and emotional health.
- Consider this: Often, it is easier to blame ourselves rather than be angry with others or the situation. It somehow makes us feel more in control. Maybe there is anger underlying your guilt?
- Forgive yourself. You are doing the best you can.