After The Caregiving Ends: Reflections

Caring for someone 24 hours a day for months or years is not easy. It requires undivided attention, loving sacrifice, and unending amounts of energy. You sacrifice your needs for another and your focus becomes their well-being and comfort, even above your own. This burden is a gift of love; it is a way to show the care recipient how much they mean to you, and to repay them for what they have done for you. The honor of giving to another in this way has been documented as the primary motivation and reward for the sacrifice that is made.

This intense other directed focus comes to an abrupt stop with the care recipient dies. Suddenly, in an instant, their need for you is gone. In one instant, you no longer have someone to care for; in fact you may be the one that requires care.

Initially, the experience results in feeling of freedom. The day my husband died we went to lunch after the crematorium removed him from the house. My children and I realized we could park anywhere without concern, we could go to the place of our choosing, and walk at the pace we wanted to walk. I did not have to worry about holding onto anyone, nor worry about a fall, or the inability to navigate rises in the pavement or stairs. I only had to focus on what I wanted for lunch, something I had forgotten about. The feeling of freedom was not a feeling of loss, it was a joyous relief, and it was accompanied by some guilt.

Another odd mix of emotions can show up when its time for the world to get back to normal for everyone else. With the activity that had been occurring in the house for the previous months complete, all the family, visitors and social support leave. The children began living their lives again, and the house became quiet. Initially, there was a freedom in choosing what is on the TV, eating whatever and whenever I choose, and doing whatever I needed or wanted to do with free time. Yet, at the same time, the realization can result in sadness and loneliness.

Feelings of freedom and loss appear at the same time. I have missed not having anyone to take care of, and not having anyone to worry about me. I have missed focusing outside of myself. There has been no one to help me think through problems, no one to help me dream. There has been no one to cheer with during football games on TV as the dog and I learn to enjoy exciting games with no one cheering. There has been no one to help with any of the work around the house, if I don’t do it, it does not get done! Little did I realize how long my husband had been doing some things, like feeding the dog. I have had trouble remembering to feed the poor dog, even close to two years later. It did not take long to realize that every single household matter ends up in my lap alone.

Recognition and discussion of post caregiving adjustment has been lost in the midst of grief research. While intertwined with bereavement, some of the feelings are unique to those who had intensive caregiving prior to a loss. For professionals helping the bereaved, I suggest you consider the additional complication when someone has had daily caregiving demands over a significant amount of time. For those of us who have experienced caregiving and grief, don’t find yourself surprised as you hear your name called out at night, find yourself stopping to help your deceased care recipient up the stairs, or hearing yourself automatically pointing to the ground and telling those with you to be careful of a rise in the sidewalk so they do not fall.  Caregiving habits are hard to break.