Thursday, April 3, 2025

Thursday, April 3, 2025

Tonight's picture was taken in April of 2004, during Mattie's second birthday party. That year the theme was Blue's Clues, and YES I did a clues game with the children. By Mattie's second birthday, he was excited, understood what was going to happen, and was in the mix the whole time. A big difference from his first birthday party, where he and I spent some time alone in his bedroom. As the noise and commotion where a sensory nightmare for Mattie. Mattie would be 23 years old tomorrow. It is hard to believe he was alive for only 7 years, and gone now for 16 years. Any one who tells me that things happen for a reason, I want to know what GOOD reason there could be for childhood cancer?

Quote of the day: No matter what you’ve done for yourself or for humanity, if you can’t look back on having given love and attention to your own family, what have you really accomplished? ~ Lee Iacocca

One of my friends sent me an article entitled, Caregiving can test you, body and soul. It can also unlock a new sense of self. I sat down to read it this evening, and several things jumped out at me. Now mind you, caregiving is NOT something I need the 411 on, as I come from a long line of caregivers in my family and I did my dissertation on the stresses of family caregivers, who also work full time. As this article points out, many people who take on the role of caring for an older adult, for the most part do not go around introducing themselves to others as caregivers. This article talks about the concept.....caregiver identity theory. Researchers want to know why caregivers do not ask for help and use the support that's already out there? Identity theory suggests one reason..... People don't think of themselves that way. The c-word (caregiver) doesn't resonate with them.

I get what the theory is suggesting and I also get that family members may not use the terminology CAREGIVER to define themselves. But I DO NOT believe for one minute that caregivers do not ask for help or look for support, because they have an identity problem! That to me is down right ridiculous. Whether caregivers call themselves caregivers or not is irrelevant. Caregivers do not ask for help for MANY more solid reasons. Such as guilt, the desire to serve in this role and to give back, and the financial burden associated with help. 

Putting the identity theory aside, the article does a great job highlighting how this woman changed as a person, once she took on the intensive role of caring for her mother who had a stroke. She mentioned that the person she used to be was erased, she no longer did things for herself, didn't meet with friends, and better yet she had no desire to do any of that either. I understand, I relate, and I agree 100%. 

Caregiving has a way of sucking the life out of you. As such it makes it harder to engage with the outside world, a world that is not inundated with medication management, pain, bodily function issues, life and death decisions, and the list goes on! Which is why most caregivers, like myself, disengage with friends and other activities. Mainly because we are living in two separate worlds.  

What caught my attention in this article was the statement.... "This idea that you'll go back to the person you were before, that's never going to happen." I think that is the most honest, accurate, and sobering reality that I have read in a long time. It is 100% true. I see it with my caregiving role with Mattie. I supported Mattie, now 16 years ago, yet my identity of being a mom who helped her child cope with cancer is ALWAYS a part of me. It doesn't go away and therefore it would be impossible for me to return to the Vicki that I was before Mattie was diagnosed with cancer. That person no longer exists.

Add to that enormous change, is now my role as my parent's caregiver. A role that my husband encouraged me to take on, with his help. Now he is gone, and unlike the woman in this article, I am managing the impossible alone. I do not have an adult in my house EVER looking out for me, for my best interest, or to lend a hand when I need a break. There are no breaks, instead, I have to rise to the occasion each and every day, and I have done this for three and a half years, with no breaks! 

With each caregiving role I take on, another piece of me dies. Then tie into this intensive role, being divorced in the cruelest manner possible, and I truly do not see a way of coming back from this nightmare. What has happened to me as a wife and a mother, is actually far more devastating than the intensive caregiving I perform on a daily basis.