I’ve not yet met a fellow caregiver who, at some point, hasn’t expressed at least one regret…maybe more. Caregiving can be extremely rewarding and challenging. The rewards are pretty clear.
On the challenging side, there is care delivery. Caregivers end up on the front lines providing services that, in the past, have been in the hands of trained healthcare practitioners. Patients are moved home at a faster rate out of hospitals and treatment centers often leaving injections, wound care, medication oversight, and more in the hands of the family.
Another challenge that weighs on caregivers are the medical care decisions especially, if they don’t turn out for the best.
Finally, over time, we buckle under the stress, worry, fear, physical and emotional exhaustion. Sometimes, in those moments, we don’t show up as our best selves and we often judge ourselves harshly for it.
Caregiver remorse can be complex – a combination of guilt, shame, sadness, grief – it’s a cocktail of some of the darker layers of feelings that can lead to depression and impact many aspects of our wellbeing.
When we lose a loved one we’ve been caring for, all of this is amplified further, particularly if the caregiver perceives their delivery of care or role in the decision making process may have contributed in some way. You owe it to yourself to make peace with the past. Here are three ways that have worked for grieving caregivers I’ve coached:
Forgive yourself. We are our own worst critics. We hold ourselves accountable to a much higher level than we would others. You meant no harm. You did your best under very difficult circumstances. If you can’t do it for yourself, do it for your loved one. They would not want you to waste precious time feeling guilty.
Let go. Find a way to release the past. We can experience healing through art. Painting, writing, dancing, sculpting, building, quilting – whatever helps you focus in the moment and create something while tapping your artistic side can help you move forward and find moments of peace.
Live on purpose. There is great healing when we find a channel for the energy of grief and loss. Helping others, especially when you can take what you learned from your experience and make the journey a little easier for someone else, can bring peace and a sense of purpose to your life that may have been buried by the grief.Tags: grief, guilt, Moving forward
Thank you for your insight.
You are welcome. While I cannot change the challenging times, I can use what I have learned to hopefully help provide a little ease for others. I often judged myself harshly for not being perfect in my caregiving role. Now I know I was doing my absolute best in every moment, even when I was less patient or had less to give. Show yourself grace as a caregiver when you can.
I did perceive my “delivery of care or role in the decision making process may have contributed in some way.” I like the way you phrased that. My caregiving took place over 3 years not just the few weeks before she died, so I must learn not to fault myself over what happened at the very end, and instead, take consolation from all the good things I did for her over the whole duration.
The grief I am feeling at the moment is actually painful to endure. I spent my life protecting my beautiful special needs twin brother and looked after him in adulthood. His passing has left a hole in my heart and all I can recall is the times I became frustrated or embarrassed by his public conduct during my teen years. He died in his sleep after a stressful day being stuck indoors because of the cold weather at 65 looking forward to waking up to watch a hockey game. It never happened.
My whole identity and routine in life was around keeping him safe, well fed and as healthy as I could. As we got older it became exhausting for me and I started dropping friends and had no energy for anything else but this role. This was not his fault. I did not always trust the intentions of some of my family members but wish I demanded more from others. He had a girlfriend for over 30 years who resided in a group home and she seems to be handling this much better than myself.
Janet, I am sorry for your loss. I find people who are caregivers by nature often tend to be highly critical of themselves focusing on what we could have done better without giving ourselves credit for all we did that helped our loved one. Recognizing we are human and not perfect, that we hold ourselves to high standards, and that we did our absolute best in every moment – even in moments where stress, exhaustion, or worry caused us to feel frustrated or angry or to lose patience – that was the best we could do given all that was on our shoulders – these things are important to acknowledge.
It’s not surprising after being your brother’s caregiver for so long that you would wonder who are you now. It sounds like you gave a lot to him and you made a profound difference in his life. The people who love us would want the best for us after they are gone. I believe this. It takes time to process a loss of this magnitude – and sometimes extra support of a grief therapist or a group. Be sure to reach out if you need help. It can be an important part of the healing process.
C. Frey…truly a great observation – ” I must learn not to fault myself over what happened at the very end, and instead, take consolation from all the good things I did for her over the whole duration.” Yes, indeed!
I spent a year or so caregiving for my wonderful 82 year-old father after his lung cancer diagnosis. I miss him so badly & words can’t express how wonderful he was. His death feels so profoundly wrong. Thank you for your blog post. Intellectually I know I did all I could to help him, but I still frequently feel terrible for not doing more. It haunts me because I loved him so much. Those who loved the person cared for the most seem to carry more intense regrets. Interesting paradox, to be sure.
Jim, thank you for sharing your story about your father. It sounds like you had an incredible relationship with him. We are typically our own worst critics. Often, when I ask clients what they believe their loved one would say about the care they were given, they realize that it would be gratitude, not judgment, that their loved one would share. Another question I’ve asked myself is what would my latee husband want for me? He would not want me to add guilt on top of grief. He would want me to remember him but to also eventually move forward with my life and make a difference in the world. It took time, but I did. There are no easy fixes for grief but sometimes questions like this can help us see a different perspective…when we are ready.