Although my husband Alex retired from Oregon State University, he is still guiding a few of his students through their dissertation process. Last week one of his students presented a dissertation proposal about the challenges people face as they enter a community college after being incarcerated. Alex said he couldn’t help but compare his own feelings of being imprisoned during the time he was caring for his first wife through the final stages of her terminal illness with lung cancer.
Of course, the critical difference between being incarcerated in prison and being a caregiver is that the prisoner is being punished for a crime committed. A caregiver’s freedom is restricted out of a sense obligation and love.
Alex said felt lucky that he’d been able to hire someone to care for Amey during the day so he could continue to work. However, during the last several months of her life, when he got home at night, he felt like he was living in solitary confinement.
It made me think that caregivers experience different levels of restriction as a loved one’s disease progresses. In the beginning it’s like minimum security. You don’t have unlimited freedom, but you can move about within the walls of your confinement, and you still retain some flexibility about what you do and how you spend your time.
A person in medium security has less freedom, fewer choices and has to cope with feelings of boredom and loneliness. At the maximum security stage, there is very little interaction with others and practically no freedom to move about. This is the stage where isolation and depression play havoc with a person’s mental stability.
I don’t know whether you feel like being a caregiver is similar to being in prison, but if you do, think about where you are in the process and what choices are still available to you. If you are at the beginning stage of caregiving and still have the freedom to leave the house, I would encourage you to pursue your interests and stay engaged in social activities as long as possible.
If you’re in the middle of caring for someone with a progressive and degenerative disease and leaving the house has become difficult, find something to do at home that brings you pleasure. It may be reading, gardening, painting, scrapbooking or connecting with friends on the Internet. Whatever it is, keep doing it for as long as you can.
If your loved one is approaching the end of life, do what you need to do to take care of him/her, and whatever you can to take care of yourself. Ask for and accept help. Rest when you can. Say what you want your loved to know while he/she still has the ability to hear you. And then try to take comfort in the knowledge that caregiving is not a life sentence. This stage won’t last forever. There will come an end to it. There will be a period of sadness and grief, but eventually you will move on to a new stage in your life. At this point you will have the ability to make choices about how you will go forward. You will be forever changed, but you will be free.