things they don't teach you in school

March 24, 2010 7:25 AM

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.

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.

posted by anonymous to human relations (7 answers total)

No relevant experience, but it sounds like you've got the "good and awesome sister" thing down.
posted by bfranklin at 7:35 AM on March 24, 2010 [1 favorite]

Developing/maintaining a local social life and making time for yourself among the tasks you take on for your sister will help you keep from burning out. You will also need support, as well as having some time that's just for you, whether its for the mundane maintenance chores of taking care of yourself and your own life, or just staring at clouds. Best of luck to both of you.
posted by TruncatedTiller at 7:44 AM on March 24, 2010 [1 favorite]

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.

The first thing is to stop looking at it this way.

My grandmother took a fall and broke two vertebrae in her neck and was paralyzed from the waist down. The doctors were never sure if and when she'd be able to walk again; my grandfather, of the generation that men work outside of the house and fix things, had no skills when it came to managing a house. It seemed pretty obvious that their entire house dynamic was about to change, possibly forever.

I moved in, after some careful thought, and stopped the career and education path I was on to be there for my family. It was an opportunity in disguise; what I found was that I ended up with incredible relationships with people, a real sense of self-worth and a feeling that doing the right thing actually did feel good. I became the leader of their household, helping them with everything; through months of hospitalization, rehab and return to the household. I was there for the better part of a year and a half; eventually returning to my previous life.

The gratitude of people in need sustains you; many people achieve career and education success but few end up with the kind of success story that you will have by making your sister's life better. The respect, not only from others but also from yourself, that you get is empowering. It makes you a better and more successful person.

You will find professional and education success at some point if it's what your passion is; the opportunity to be that incredible person in someone's life while they're leaving this world/suffering is something few take the opportunity to experience. That same grandfather passed away last month and while I was giving his eulogy, I felt so lucky to have been in the right place, at the right time to be there for them. It gave me as much back, probably more, than I ever gave them.

It wasn't your plan, but coming from experience, it's so, so worthwhile. Best of luck!
posted by Hiker at 8:21 AM on March 24, 2010 [10 favorites]

I have some experience with this and one of the things that happened to me was that when I was finished taking care of my grandmother, I fell into a very deep and debilitating depression. I wasn't taking care of myself and I was so focused on being a good daughter/granddaughter that I slipped away. This is not helpful.

Take time for yourself. Make friends. Do something other than taking care of your sister that feels like it is filling a need in your life - a class, something. Do not isolate, even if that's what you want to do with every cell in your body. When/if you start to isolate, let someone know and ask for some help, even if you don't necessarily want it.
posted by Sophie1 at 9:55 AM on March 24, 2010 [1 favorite]

This is a good opportunity to take a few hours each day to work towards something you've always wanted to do. Train for a marathon, learm to speak Russian, take up guitar or write that novel.
posted by fshgrl at 10:19 AM on March 24, 2010 [1 favorite]

Robert Frost's The Death of the Hired Man speaks to family obligation, and choice, and pride, in none of the ways you think of it, now perhaps, anonymous, but that Hiker now knows.

"... 'Home is the place where, when you have to go there,
They have to take you in.'

'I should have called it
Something you somehow haven't to deserve.' ..."

What you get, for going home to help, and helping, willingly, as long as help is needed, is the simple entrée of belonging, in a new role beyond your birth or accustomed role, yourself, to something, a family, that no one ought "haven't to deserve." Because it is funny, that in families, it doesn't matter whether you are the one that deserves, or one of the ones that haven't. It's the help given, willingly or grudgingly, and accepted gratefully or sullenly, that over time, just in the doing of both sides of it, that make a new, stronger bond.

5 years ago, when it became clear my mother was dying, I moved home to help my father and my brother, a schizophrenic man who had long lived with them, with my mother's illness. And 5 months later she did pass, and then, unexpectedly, 6 weeks after that, so did my father. And, since, I've cared for my brother, and will, until one or the other of us passes. I knew, for many years, since my brother was first diagnosed, that this would someday be my responsibility, and for many of those years, I dreaded it. I lived far away for many of those years, and visited only for a few days each year, as basic family duty and simple courtesy demanded. In those years, it wasn't for me to comment on how those three lived, or what might be best for any or all, as long as they could decide for themselves.

But when it was time that my help was really needed, I knew it, and somehow, in knowing that, my reluctance to change my life, for the sake of my father and my brother vanished. And here we are still, the two of us that remain, not every day a picnic, and some days, a mighty struggle of madness and despair and medications and nonsense.

But I do what I can, and the doing of it is, I know, on our better days, worthwhile. And that is all the reason I need to get through the nonsense.

I wish you well in discovering yourself, and your family, anew.
posted by paulsc at 11:08 AM on March 24, 2010 [1 favorite]

I'm so sorry.

I am still adjusting to giving up my life in Chicago to be back in my hometown taking care of my family. My dad had cancer, then developed dementia, and I had to take over the rental business and usher my mom into bankruptcy. I couldn't not do this because of my values. It's hell to be off track and away from the life I would choose but at the same time it was pretty unsettling for me to substitute sending money when that was the need and the way I could help.

Make sure that you read books on caregiving to prepare yourself, and find a support group through local medical and social agencies, so that you can talk about all of this. Do what you can to maintain your professional status and career, adjusted for location and other limitations. Work on plans for the future -- say, if your mother dies, will this still be a viable setup? Give yourself breaks and outs and red lines not to cross.

It's tough. For me, the experience has made me more confident in myself and more interested in creating a more giving and generative (in the creative, social sense, not the parenting sense) me. It can be exhilarating and wearing at the same time. Be prepared for a lot of learning about yourself.
posted by dhartung at 11:23 AM on March 24, 2010 [1 favorite]