Caregiver Guilt: Allowing Ourselves to Dream about the Future

We have spoken before about the ambivalent feelings we have as caregivers, wanting to be devoted to caring for our loved ones and yet needing to have our own life. I want to extend that conversation to talk about the ambivalence of wanting our loved ones with us and, at the same time, wanting to begin to dream about the future and what our lives will be like when we are no longer caregivers.

One of the caregivers in our network spoke about his wife's long battle with colon cancer with metastasis to the brain, which has caused onset of dementia. For the last five years they have been through numerous procedures, surgeries, tests, treatments and, of course, doctor visits with hours of waiting. Their oncologist sees the devastating toll this process has taken on both the cancer patient and her husband. Recently, the doctor said to the caregiver: the good news is that it is a very slow growing cancer; the bad news is that it is a very slow growing cancer. He was expressing a sense that perhaps enough is enough and the difficulty of such a prolonged illness.

I have two reactions to this doctor's message: one is that we cannot know why this illness is so long-term and second, it's okay for the caregiver to have feelings of wanting it to end.

The purpose or plan for someone who is ill

We cannot know the purpose or plans for this person who is ill. Perhaps, they need this time to finish up some of their life's business, to reconcile with a friend or family member, to clear up some financial or emotional dealings or to correct some wrong that they have done in their past. Maybe they just need time to say goodbye to their loved ones. I believe that they are fulfilling a higher good in the time they have left on this earth.

It’s OK to want your caregiving to end

It's okay to feel like you want it all to end and get on with your life. It's time for us to accept those feelings and even embrace them. They are normal and natural and certainly do not reflect any less concern or caring for our loved one. We can feel both the sadness of what it will be like when they are not with us anymore, and the relief that we may feel when they are not with us anymore. Again, it's the good news, bad news message and that's okay to feel these feelings.

Feeling at peace

The key is to feel that we are at peace with our loved one. Have we said the things we need to say about how grateful we are for them? Have we forgiven and/or asked their forgiveness? Have we affirmed the love between us?

The caregiving experience is full of shifts from one feeling to another. We do some clinging to the past while wanting to peek at the future. It's all part of the natural sequence of life and it’s all okay.


Dr. Amy


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