I am prioritizing my needs. As many women know, this is a revolutionary act.
Maybe a week and a half ago, Barry threw out the person trying to help us. The hospice nurse was asking us questions, to see what, if anything, we qualify for. When Barry learned they had no financial help for us, he told her to leave. So she and I sat in her car and I answered questions. She said I might have to take him to court. For what? “You may need to have him declared mentally incompetent.” Ugh. It has come to this. She also suggested that I contact a union lawyer to see if I can shore up my POA.
I hate this. But my life is passing me by and that is no longer okay. It is only a few weeks until 2017. I got my MBA in 2012 and have done nothing with it. I need to get aggressive about getting respite care so I can work a little and have something on my resume.
Also, I am seeing what I need. I had a belt that used to hold up a skirt that had become a little too big. The belt disintegrated, so I ordered another one. Also, I lost my favorite hat (and only winter hat) at either Barnes & Noble or in the mall hallway. I will see if the mall’s lost and found has it. At any rate, I ordered two more purple winter hats online. Also, I realized that I had given to Goodwill my cardigans, so I ordered two new ones online. Normally, I don’t wear cardigans because they are another layer of clothes that I don’t generally need. But this winter has been unusually cold and ridiculously snowy. Michigan in December, whodathunk it? Climate change has messed with the usual expectations.
I’m done feeling guilty for trying to get my needs met. When Barry threw out the one person actually trying to help us, I knew this was a new phase. He is not the man I married and I am not going to put my life on hold indefinitely for this person. It’s undoubtedly the Huntington’s and my needs have been put off for so long that I no longer care about Barry’s. I’ve learned that if I don’t care about my own needs, guess what, yours don’t matter, either. If my needs are not a priority, there is simply no reason for me to care about other people’s. I realized that if someone threw me in jail for neglecting Barry, part of me would be alright with that because, if I were in jail, sitting in jail would be all about me. The state could feed me and support me and Barry would instantly become his sisters’ problem, not mine. It would be a fine form of revenge. That’s cold, but I am so past caring. People never talk about the emotional reality of caregiving. If you do it long enough, it stops being giving because you ultimately stop caring. “Oh my god! What if he dies?” becomes, “Oh please, god, help him to let go or just take me now. Please end this caretaking phase of my life once and for all.” At that point, it gets a whole lot easier to ask for help, oddly enough.