things they don't teach you in school
March 24, 2010 7:25 AM Subscribe
I’m about to undergo some pretty major role changes in my life, and I’m not sure I have the tools and tricks to deal with those changes. I need strategies / diversions / projects that will help me become a better caregiver for my little sister, who is faced with a dire medical prognosis, while at the same time trying to retain my own identity in this crisis. Folks who have become caregivers to loved ones at the expense of other important things in their life, this question is for you.
posted by anonymous to Human Relations (7 answers total) 1 user marked this as a favorite
TL;DR. My little sister was diagnosed with neurofibromatosis, type II. It’s a super rare genetic condition that causes nerve endings to grow tumors randomly, at any place in this body. She’s got a lot of them. After a major back surgery, we’re hopeful that we can get her walking and in a comprehensive treatment plan, and that treatments for this disease will improve. However, our doctor has been frank with us – cases like this have about a ten to twenty year life expectancy.
So I’ve decided to move back home to help my widowed mother with this process. I’m pretty good with my little sister and my mom has told me she doesn’t feel up to dealing with the medical treatments and supervision this is gonna entail. I’ve begun to have some doubts myself, frankly. On the plus side, my sister has a good medical team that will be treating all of the various ailments of this disease. We want her to go to California in the summertime if we can get her on her feet.
However, this is a pretty serious change in my plans – I have a job I love and a low-residency graduate program that I’ve been working on. This is going to at least temporarily fuck a lot of the things that I’ve been working towards. I’m looking into programs at the college in the area where I’ll be moving, and in the meantime I’m going to try to finish up my semester at my current program. But after talking to the doctor, I realized that 1) I’m a good support for my little sister and 2) time could potentially be short and that being several states away is no good.
I am trying to be optimistic, but it’s really difficult. I can definitely manage while taking care of my sis, but when I’m not around her it’s a much worse feeling. Moving back home (at least until I can find a place of my own) is hardly something that I relish. And I’m worried that my attitude – about leaving behind a lot of things that I love to support my family – is gonna effect my interactions with my little sister. But this is something I’ve got to do. Is there another way to think about this situation so that I don’t feel quite as trapped?
Next, what are some traits of a really good and awesome sister in a situation like this? What makes people feel good about themselves and capable of doing that extra bit of painful rehabilitation? Are there any hobbies I should take up during the wee hours of hospital life that will make this process easier?
I know this is a broad question, but I hope that people who have experience coping with tragic circumstances can help me hack some ways to continue working on my interests while still being an awesome person for my sis.