Grief is a very normal and necessary part of this process. The loved one that you knew before the disease hit…is gone…forever. Allow yourself to grieve that the person who was…is dead. BUT! You still have a living person to work with, to help, to rehab. Team Loved One is working now on version 2.0 and if that doesn’t have success, there’s a bazillion numbers to follow.
I believe that counseling is a requirement for the Caregiver. How can you know what to do when there is so little known about the brain by the Medical Industrial Complex? There is no Schizophrenia for Dummies book out there.
Part of grieving hit me right away when I went to get our son from college. We knew what it was, the signs had been there for 6 months and now it was in full bloom. I sat alone in my car and didn’t realize until much later that I was ‘bargaining’. Talking out loud because it just felt good, “I would give my life so that my son didn’t have this”, “I would take torture daily for a year, for 5 years, so that my son wouldn’t have this”…finally coming back around to “I would give my life”…and I was struck by an epiphany. I would give my life…and I truly meant it when I said it. An image of what that meant zoomed into my head…I would give my current life, the career, who I was, everything about me, would be given up to ensure, to the best of my abilities, that my son would eventually NOT have this brain disease anymore. I knew that I could not live with myself, if I did not do everything I possibly could, did not give my very best (which totally sucks sometimes, falls WAY short…it’s still my best…) to enable our son to become his well self, whatever that comes to be.
I didn’t cry until 2 months after diagnosis. And it took a fierce training work out from a rowing(regatta) class to get me there. It was EXHAUSTING and I didn’t know if I could drive home because I was so tired. Driving in the park away from the lake, I began to cry. I pulled over and let myself wail and bawl and bawl and wail and bawl until it was done. Completely. And then I just sat there thinking how can I drive another 15 miles…I did. Now I can cry more frequently as needed.
You MUST take care of yourself first. What do they say on an airplane in case of emergency? Caregivers get oxygen FIRST, so they might take care of the helpless.
I try to take a monthly ‘get a way’ for a day or 2.
Our son will try to ‘guilt’ me…I use the airplane reference firmly and state that it applies to all areas of life.