I have found that the caregiver journey consists of four stages: shock, awareness, acceptance, and healing. The arduous journey starts at the time of diagnosis and continues through the death of a loved one – and beyond.
In the first stage diagnosis and prognosis monopolize every thought. Searching for a more accurate or hopeful diagnosis, you spend countless hours going from one doctor appointment to the next. Denial is paramount and you expectantly wait to awaken from a bad dream.
The second stage finds you wrestling with how to tell family and friends and responding to their endless questions. You not only worry about the future, but also about what tomorrow will bring. Sleep is elusive and fatigue is a constant companion. In your awareness, thoughts of “when will this nightmare end” or just walking away from it all are common. You wonder what preventive measures could have been taken and pray each day for a miracle.
In the third stage you slide into robotic motion. It becomes crystal clear that a miracle is not forthcoming and accept that life will never be the same again. You become emotionally drained and numb while making end of life decisions about continuing treatment, artificial feeding and hydration, and knowing when it’s time to let go.
The fourth stage brings a dichotomy of feelings: feelings of sadness but relief for the end of your loved one’s suffering – and yours. This latter feeling is held to be socially unacceptable and is laden with guilt. It’s only natural that a person feels relief when a burden is lifted but it goes against social norm to think of caring for a loved one as a burden. Healing begins by recognizing that these feelings are normal and by granting self-permission to take solace in grief.
Grieving starts at the outset of the journey and does not end with the death of your loved one. You grieved continually for the loss of companionship, relationship, and life, as you knew it. The relief that’s felt with death is coupled with the reality that the person is gone forever. You may be surprise that your grief is so intense believing you should be happy that the person’s suffering is over. But grieving is cathartic – it’s a purging of long pent up anguish, anger, and fear.
Though the healing stage starts with renewed grief, it is also a time of recovery. The challenge here is for you to reorganize your life and embrace the future. It’s also a time of self-discovery. In this stage you move from grieving into a period of mourning. Here thoughts of good times and bad are reviewed and a feeling of sad peacefulness settles in like a comforting blanket. It can be difficult to emerge from this period because you feel vulnerable yet secure as people have few expectations of you and make few demands. But slowly you start to accept invitations like going to lunch or a movie with good friends and then maybe to the beach for a weekend. Suddenly, you realize that the sun is shining and relish in the warmth on your face; you remember how good it feels to laugh; and like a butterfly tentatively unfolding her wings, you reemerge into the world.
Throughout the care giving experience you discovered how remarkable you really are – you discovered the ability to find strength when you said you had no more left; you found humor in tragedy and in the absurd; and you discovered the fortitude to keep it all together. These qualities of strength, humor, and fortitude will help you fill the void that the death of your loved one brings.
Being a caregiver is not only a role but also an identity that suddenly is gone leaving you wondering who you are. Take this time of healing to rediscover your self. Make a list of all the things that used to bring you joy and satisfaction. Did you enjoy playing tennis or golf, or bowling? Did you like to read, go to the theater, or take long walks? Who were, or are, those friends that made you laugh? Who can you call to share sweet memories? Who can you count on to lift your spirits when you’re down? Every week promise your self that you will venture out and revisit one of these things – read a best seller or take a tennis lesson. Make weekly phone calls to friends to keep your social support system strong. Sometimes you need to talk to others who have lost a loved one and joining a grief support group can be very helpful. It is also beneficial to continue to go to your caregiver’s support group. You will need their support and encouragement and they need yours. Gradually, you will wean your self away.
Most important of all – like your self and love your self. You have done a remarkable job that, given the choice, most people would never undertake. Seek the joys in life and allow each day to unfold with hopeful expectation.
Mary C. Fridley