The following reflection comes from shared stories of caregivers of a family member or spouse with dementia. It also includes my recent personal experience with my 93-year-old mother-in-law who died at home with heart failure and COPD.
Frightening. It is the moment when you recognize frailty and your worries become reality. It is about coming home after work and smelling smoke, finding dad outside in the snow without shoes, removing the car keys. You worry about their personal safety, are they eating, taking their medications, remembering who I am or who they are, and you are terrified of what will come next.
Comforting. It is experiencing calm after a painful experience or behavioral outburst, when the schedule works, finding that you have patience, your personal satisfaction when you are given the “thumbs up” sign. It is about seeing the recognition in your loved one’s eyes of peace and gratitude realizing your presence alone is enough at this time.
Lonely. It is feeling you can’t ask for help, or feeling that you should be able to manage this all by yourself. It is about being alone with your loved one, re-living a past event that you’ve heard many, many times before, having limited social contacts and wondering how long can this go on.
Frustrating. When you do not know what is going, can’t do anything to help or you feel no one is listening to you. It is physically and emotionally exhausting. It is about lost family relationships when families disagree on the diagnosis or the way care is being managed. It is the guilt you feel about letting others down. It is about learning that you do what you can, and realizing there is no help for the disease that you just have to listen objectively and not get totally worn out.
Teamwork. It is about bonding with other family members or staff, working towards a shared goal. Using the computer, Facebook or the telephone to give updates and draw strength from other family members. Learning that you can lean on others and a feeling of joy or triumph in a “job well done.”
Hanging on and holding on. To a lifetime of positive and negative memories, it is about personal exhaustion, sitting by the bedside, wishing for peace.
Finally, caregiving is about letting go and saying good-bye knowing that you have done your very best and being at peace with all that you were able to accomplish.
Kathleen Fisher, PhD, CRNP, professor in graduate nursing