For those who are providing caregiving to a family member with a serious and/or chronic illness here are some profound insights. These come to me through someone who has spent years as a caregiver.
1. Loose the guilt
I often tell folks that a certain amount of guilt, what I call “healthy guilt” is fine. Healthy guilt gets us up each morning to go to work, school, do our chores, interact socially etc. Healthy guilt is our motivator, the little voice inside our heads that tells us to do the right things. Unhealthy guilt, on the other hand, is like a heavy weight that drags us down into a pit of despair. Unhealthy guilt forces us to ONLY focus on another and to ignore proper care of ourselves.
2. Are you lonely?
A feeling of being isolated, disconnected is common, especially for those couple or families dealing with chronic illness. Old friends may not understand or be able to relate to the demands of caretaking. It is important to find social and emotional support. This may need to be with new people who are either going through or have experienced similar life circumstances. Connecting with those who truly “get” what you are going through can be very nurturing and healing.
3. Maintain a routine
In spite of the endless doctor appointments and caregiving duties it is important to have your own daily routine. Such activities as having morning coffee, walking with a friend (more on exercise later), journal writing, doing a fun craft or hobby and more can help you feel like your life is important too!
4. “They have no control”
Those dealing with a chronic or even life-threatening illness often are angry. Their bodies and emotions may be very much out of control. Rage at ones illness, body, doctors, fate…god…are natural responses to very difficult circumstances. Sometimes medications meant to heal or slow illness down also cause extremes in moods. Of course there is never an excuse for violence. It can sometimes be helpful to look beyond the external expression of anger to underlying emotions of fear, loss, anxiety, worry, and even terror.
5. Take care of yourself…NOW!
It can be tempting to think that your job is to only care for the sick person and to put off yourself for …after. You must do ongoing self-care now, in the present not only to have enough mental and physical energy to be able to provide care, but also just because you need this. Good self care requires lots of physical exercise! Physical movement is a way to expend negative stress as well as to help maintain health. I can’t emphasize exercise enough! Self-care also means attending to your spiritual, social/relationship and, intellectual needs. Take time to read (even if just a little), listen to music, have lunch with a friend..and try not talking about illness!
Illness can seem to be all encompassing and deplete all energy. But, it can also bring gifts…often those not recognized until after the illness is gone or your loved one has died. Sharing deeply personal and intimate moments during a time of severe illness or through the dying process can be profound.
* I am most grateful to my client who so courageously shared the above insights with me and granted me permission to share and adapt in order to share this with others