How to grieve for somebody who is living?
October 19, 2013 6:03 PM   Subscribe

My sister was in a car accident two months ago, sustaining severe brain injuries. She is out of danger and is making good progress in rehab but the nature of her injuries means that the brilliant, unique girl I once knew is most likely gone forever.

I see her every day and she greets me with a smile of recognition but I still "miss" her and feel the need to say goodbye to the "old" sister. I can see parts of her personality peeking through - her quirky sense of humour, her love for animals, her cheekiness; but in the long term, she will have memory and cognitive disabilities and probable personality changes. In those early weeks when we thought she was going to die, I went through the archives and made a list of recommendations such as On Death and Dying by Elisabeth Kubler-Ross and A Grief Observed by CS Lewis but if you know of any resources more relevant to this specific situation I would be very grateful. Fiction, non-fiction, essays, or film suggestions would all be helpful.
posted by Naanwhal to Human Relations (17 answers total) 27 users marked this as a favorite
You might consider Cathy Crimmins's memoir, "Where Is the Mango Princess?," which traces her experiences after her husband sustained personality-altering traumatic brain injury.

I am so sorry. Wishing you both strength.
posted by MonkeyToes at 6:08 PM on October 19, 2013 [5 favorites]

This is more a guide for how to cope with various aspects of being a family member of someone with brain injuries, but it may help. Link. This is another, meant for spouses, but might have some insight.
posted by xingcat at 6:14 PM on October 19, 2013

Recovery from TBI is a marathon. Two months is just the first segment. I suggest giving her time to see how far she can get.
posted by Dansaman at 6:35 PM on October 19, 2013 [21 favorites]

This is not a resource, but a friend of mine used to be a social worker on a brain injury rehab unit. She said that the grief that family members experince after a loved one's TBI is very different from the grief associated with death, and in some ways harder to deal with, because the person is both gone and still there. I was going through something similar at the time, related to a different medical issue, and I found this idea really helpful in understanding the mix of emotions I was feeling: the loss that the person I loved was so different, in some ways gone forever, and yet in other ways right there, standing in front of me. Just knowing that this was a common phenomenon helped!

If your sister is on a brain injury unit, or has been, consider talking to one of the social workers there. They might have helpful insights, or be familiar with the kind of resources you're asking for.

I grew up with an uncle who suffered TBI when he was in his early 20s. All my best to you and your family.
posted by not that girl at 7:16 PM on October 19, 2013 [2 favorites]

I would agree with Dansaman. At this point, your sister is still recovering. You don't know yet how she will develop. It makes sense to prepare yourself for the very real possibility that she will be a very different person from now on, and of course you're entitled to miss the person she was terribly right now... but don't grieve for her while she is still here and still working to get better. Put your energy into helping her recovery, however you can.

People make amazing recoveries, sometimes vastly exceeding what their doctors predict is possible. Just in my own life, I've seen two elderly relatives who were written off as good as dead, the doctors said they would be gone within weeks and should just head for the hospice... and they both recovered and lived in relatively good health for years.

You just can't be sure what's ahead. And if you're already seeing some signs of the person she was, that's a good sign.
posted by Ursula Hitler at 8:53 PM on October 19, 2013 [1 favorite]

It really depends on how much recovery she really makes. As others have said, give it some time, and see what develops.
That said, I spent six long years saying goodbye to my mother as she faded away with Alzheimer's. what helped me was was to cherish the bits of her that we're still present, and to watch for and be "in the moment " when they happened. She kept her delightful sense of humor long after many other cognitive skills had left, so i learned to enjoy laughing with her, when it happened.
TBI is very different, but you may glean something useful from the dementia community. I'm so sorry you're going through this.
posted by dbmcd at 9:10 PM on October 19, 2013 [2 favorites]

Best answer: I found Norman Wright's book "Recovering from Losses in Life" very helpful for situations like yours. It is a very Christian book, so bear that in mind, but it's the best I know for processing griefs other than deaths.
posted by Pater Aletheias at 9:37 PM on October 19, 2013 [2 favorites]

Perhaps it would help you to write a letter to your sister, as she was, and say good-bye.
Then write as second letter to her telling her how glad you are she survived, how wonderful the progress is she has made, and of your love for her.

Take the first letter and burn it.

Take the second letter and read it to her. Let her keep it with her as she goes through rehab.

My best to you both.
posted by BlueHorse at 9:56 PM on October 19, 2013 [4 favorites]

This is not as unlivable as you seem to think, but it is still very early stages. My wife is a survivor of a severe stroke, a week in a coma, and a still ongoing rehab process after nearly 17 years. While the nature of recovery is not a one size fits all situation, there are some things to look forward to

Motor skills tend to return for the most part within a couple of years, unless paralysis was a result of the injury. Short term memory will likely remain a challenge. Speech will improve but likely require therapy. Emotional stability and maturity will likely wax and wane. Be wary of seizures.

Be assured though, that the essential "her" is still there. The wonderful woman with the spirit, heart and soul you treasure may struggle to come out at times, but she is in there, needs your love and understanding, and wants nothing more than to give the same back to you. Yes, many things will never be quite the same, but there is really no need to "grieve" her. Continue to treasure her.
posted by scottymac at 10:37 PM on October 19, 2013 [10 favorites]

book: Ambiguous Loss may be helpful
posted by iiniisfree at 11:26 PM on October 19, 2013 [1 favorite]

I have had a series of small TIAs that seem to be leading towards a stroke in my thirties, so I've been trying to figure out in advance what to do if/when.

For what it might have been like for your sister, My stroke of insight goes very woo-woo at the end, but her description in I think chapter 5 of the actual stroke is very close to some of the TIAs I've experienced, although more severe.

And what has comforted me to some degree has been the realisation when I was at the recovery end of a TIA (mine would resolve within 4-6 hours, although the effects lingered for 48 hours) was that although I could not stand independently, move my hand well enough to hold things, and thinking in a linear verbal way took some vast slow assembly, I was still me. Not a me in a prison of my body, although the physical limitations on speaking and doing things were frustrating, but being aware that cognitively I was much more scattered, like my brain was a cup of water that had been boiled away into steam, but still the essential me-ness was there.

I thought of the first time I'd seen a fractal and understood that it kept on spiralling into itself over and over, and that during a stroke or after, I was another level of fractal, the finer details blurred or gone, but the pattern of me was still there.

I am so sorry for your loss. Whether your sister recovers fully or to a limited extent, you have lost years of who she was and her choices and opportunities, together with yours, have been altered severely. Those are losses to grieve, and it's not a plus/minus charge sheet that erases your grief with the joy of her still being alive. They simply have to be simultaneous.

Thank you for asking this question. I'll be saving this thread for my husband, hoping he never has to read it.
posted by viggorlijah at 1:59 AM on October 20, 2013 [3 favorites]

The book My Stroke of Insight was written by Jill Bolte Taylor, who also did a TED talk about her experience: My stroke of insight (also available on Youtube).
posted by amf at 6:18 AM on October 20, 2013

Best answer: As a therapist (and a person who has gone through a similar situation), I often recommend clients create a goodbye ritual for the person lost. When a person experiences a traumatic event they are changed forever, even if the physical recovery is very good. Grieving for the person she used to be is not only valid, it is an important step for you.

Grief is about saying goodbye. Ritual is an outward expression of your thoughts and feelings as you do that. The ritual needs to be designed by you, full of meaning for your relationship with your sister. Some ideas are:

--Find an object that represents your sister as you knew her (it could be an item of hers, a gift from her or even an item found in a store that represents her). Keep the item with you until you know you are ready to say good bye. Then bury it, burn it, donate it...anything to get it from your possession. You may want to say prayers, read a poem, letter or writing as you bury it (or whatever you decide to do). The actual process starts when you start thinking about what that item will be. Every step is important...not just the burying of the item. Take your time, don't rush the process. You will wake up one day and just know that you are ready to say goodbye.

--Write a letter to her. As others have recommended, this is very effective in saying goodbye.

--Take a tour through your hometown. Visit the places you were with your sister. If it helps to tell the stories, take someone with you who would enjoy hearing all about your life with your sister.

There are many other things you can do. You are on the right track in knowing you need to grieve. Above all, take care of yourself through this.

Best wishes to you and your sister.
posted by Jandasmo at 7:48 AM on October 20, 2013 [3 favorites]

Help her be the person she is today, and then the person she is tomorrow and tomorrow and tomorrow.
posted by Lesser Shrew at 8:50 AM on October 20, 2013

I think advice about how her sister might recover, etc, is well-intentioned but is not answering the question OP is asking. It's ok to grieve this loss; it doesn't mean she's given up on her sister.
posted by purenitrous at 9:03 AM on October 20, 2013 [5 favorites]

I really struggled with despair when my dad was in rehab. At two months after the accident, his cognitive recovery was just starting and I would never have believed that he would be driving himself to speech therapy a couple years later. When I think back to that time, my biggest regret is my lack of faith, which I hid from my dad but was hard on the rest of the family. Had things gone differently, I don't think I would be any happier for having tried a shortcut from denial to acceptance. Exercise, sleep, and comedy may be more helpful than reading about terminal illness.

It's great that you can see her everyday, she will need you even more as she starts to understand what's happening. Hang in there.
posted by nixt at 1:55 PM on October 20, 2013 [1 favorite]

Netflix has a great documentary called "Coma" available in the mail (not streaming) that follows 4 people for up to 2ish years after traumatic brain injury. Not all of the stories are happy or have happy endings so I hesitate to recommend it to you but I'm putting it out there as an option. An interesting aspect of the film is to watch the different family member's reactions to their loved one's brain injury. That is the part that might be helpful to you. Best of luck and good wishes!
posted by ticketmaster10 at 3:24 PM on October 20, 2013

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