Tuesday, November 6, 2012

Four years

I guess I'm still writing these yearly check in posts. They do something for me. Articulating where I am each year helps me see our situation more clearly and lets me put it in context. It's the most personal post I put up each year and I always debate whether I want to do it, but then I do. The accident, year one, year two and year three are right here. 

This day four years ago it was a Wednesday and the election results were splashed all over the news and I got a phone call from my mom as I stepped out of the shower at the gym and our lives changed in an instant.

Four years feels like forever and nothing at all. I thought this year would be easier, a plateau where we could all just take a breather, but we're finding that it's just as difficult in different ways.

After last year's post I went on obsessive internet searches looking for solutions. I found an affordable adult daycare close to my parents and it's been a mixed blessing. It gives my mom a break for a portion of the day, but it still isn't nearly enough time to take care of the house, the usual errands and herself. How can you fit a life in 7 hour increments? Dave hates it and rebels by dawdling as long as possible in the mornings, whittling down the time. We hate that he hates it but haven't found a better option. It's heartbreaking. How can I reconcile myself to knowing that there is no good solution for my family? That we're always going to be choosing between competing needs? I cling to my assertion that Dave is a part of our family and even if he isn't fully capable of understanding that anymore, he needs to be part of the team and that means he won't always get what he wants, just like the rest of us. Underneath my skin I feel flinty and bruised, all at once.

Dave has enough of his faculties left to be aware of his deficits, but not enough to resolve them. There won't be any improvement. The doctors can't tell us exactly what to expect, but the consensus is that brain injuries can accelerate the onset of dementia. We're not sure how much time we have and that makes it hard to plan. He needs to be within earshot of someone at all times, day and night. He'll put something on the stove and forget about it, he'll fall asleep in the shower, he thinks he hears us calling to him and he gets up and wanders off, he has seizures that terrify him.

We've started looking for residential facilities, with no idea of how we could possibly pay for them once the time comes. We found a place that looks promising but Dave is concerned that everyone there is too old. It broke my heart when I realized that he thought he was more functional than they were, these elderly people with walkers who were clearly still able to hold their own in the lunchtime gossip sessions. He has no idea. We observed and ate our soup with crackers, asking Dave questions to keep the conversation going, as we've learned we have to do. I can't find a place close to us that has residential traumatic brain injury care and I'm not sure Dave would like it any better if I did. Every brain injury is different, experienced differently by the individual. Where does Dave fit in now? Where will he fit in five years?

What Dave wants, what we all desperately want, is the life we had pre-accident. Realizing we have to settle for something very different was hard enough for the rest of us and it's proving nearly impossible for Dave, understandably. My mom is worn thin and I'm afraid that a few more years of this and I'll lose her as well. I suddenly see the appeal of families with seven kids. My sister and I aren't enough, can't be enough. We need hands to trade off, people to step in, schedules that could be coordinated in giant color coded spreadsheets.

I worry about how Dustin and I can keep our lives moving forward, when we're constantly tugged back home. There isn't enough time to give to everyone who needs us, so we exist in a near constant state of guilt, but we can't keep shorting ourselves either. I alternate between thinking we'll never have kids, to spare them this kind of caretaking and then wondering what will happen to us if we don't. I make a mental note to check into long term care insurance, either way. We talk about setting aside a certain number of days each month that are just for us. Sometimes we even manage it.

I feel like I'm in a house with lots of hallways but no doors. Every option that comes up is flawed, every potential solution is unaffordable or impractical. I pingpong between rage, optimism and hopelessness. I know that our situation isn't unique. Caretaking is something most families will deal with in some form, sooner or later. That doesn't make it less lonely.

The sadness is an undercurrent that runs beneath us but we try not to let it pull us in. I'm glad that Thanksgiving comes shortly after this anniversary. My favorite holiday, a chance to regroup and remind ourselves that we're a family, that we chose each other and we continue to choose each other, even when life doesn't turn out the way we'd anticipated. We're going to keep looking for solutions this year, because I refuse to accept that there aren't any. Family is worth fighting for, always.

97 comments:

  1. Rachel - I read your blog often, and am very touched by this incredible post. Your efforts are extremely impressive - thoughts to you and your family. "Family isn't an important thing - it's everything."
    Michelle

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    1. Thank you, Michelle - this is so kind of you.

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  2. I have no advice and no solutions. I think the only thing I'm sure of is that without you...without children...he'd have to go this alone. And that would be exponentially more sad and scary. Even if you can't find the right concrete solution, you are giving him infinite amounts of love. That is what makes his life, and your life, more worthwhile. <3

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    1. Thank you, Meaghan - that's one thing about this, my heart breaks whenever I see people Dave's age who seem to be alone. I can't stand the thought of any of my family members being left without support.

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  3. Oh Rachel... I don't know you, but when you write these posts, I feel like I do. My family has had experience with caretaking, not in the same way exactly, but the arduously trying to do best for all, both TO spite and IN spite of the wearing thin... that's the same. All I can say is that sometime, something will shift and things settle a bit different, a bit better... little by little. You are brave. Keep it up (:

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    1. Laura, thank you. You're brave too. Knowing there are other people out there dealing with similar situations and pulling through it (I mean, I KNOW there are lots of other people out there, but it's different if you hear from them!) makes me feel less alone.

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  4. Each year I read these posts with a lump in my throat. Just know that you are doing an amazing job. There is no right or wrong answer but you guys will figure it all out.

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  5. Each year that I read your update it sends me back reading each of the others. I just can't read one without the other. Your strength and love are wonderful Rachel. You are such a special person and I feel lucky to know you, even if it is just through this space and not in person. Thinking of you and your family and hoping a viable solution presents itself for you all.

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    1. Thank you, Danielle - I feel like I know you too.

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  6. Beautifully written post on an incredibly difficult topic. Sending you and your family my good thoughts.

    - a loyal reader in Boston, MA.

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  7. joe's grandparents care for his aunt, whose brain was damaged by a terrible fever she had when she was a little girl; when they pass away, she'll live with joe's parents, and it's possible that she would then come to us. the possibility is so slim, and the helplessness i feel about the things we would have to learn and figure out at that point is so total, that i have a hard time fathoming what it must be like for you to live in that world all the time, now, as a young newlywed, with a member of your immediate family. i know that you don't go confessional too often here, and i respect your reasons for doing so, but i...hope you know that we're here all the time. much love to you and your family, dear rachel. you are unbelievably strong.

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    1. I do, my dear LMO, I do. Thank you.

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  8. Family is always worth fighting for, but that doesn't make it easy, plain and simple. These struggles are a common link between you and a multitude of other people...trust me on that one. But it's still so hard. Career decisions, having children decisions, moving decisions..? They're all affected by something you have so little control over, which is maddening! But, you do the best you can for the people you love, and that has to be weighed with what will make you happier, too. As in--you can't be an effective caregiver if you're stressed out all the time.

    That said, we're here for you. Seriously.

    [And you know where to find me if you want to vent or talk---family caregiving has been a part of my life since I was about eight, and I've been through a lot of these difficulties that you're talking about]

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    1. Oh, Bridget - I know how maddening that is! Thank you for reaching out, I always love hearing from you. And likewise, I'm here if you want to talk!

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  9. I've sat in front of this post for the better of 15 minutes, not really knowing what to say or how to provide comfort. Since I can't figure out how to respond to the feelings you have so eloquently written, I will have to be happy with only acknowledging them and letting you know that my thoughts are with you this year, and every year since the accident.

    My father is a physician. I'll ask him if he knows of anything. You never know.

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    1. Jules, thank you. There isn't really anything to say, but I appreciate you being here.

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  10. You are so right; family is always worth fighting for. My heart goes out to your and your family, and so do my prayers. You are so brave, so honest, so beautiful. God Bless.

    www.espressojoy.blogspot.com

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  11. What a beautiful post. I have no real advice to offer, but thank you from the bottom of my heart for candidly sharing your thoughts. Wishing your family the very best, even though that doesn't seem like enough.

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    1. Thank you, Anon - we really appreciate the good wishes.

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  12. I've been going through a similar experience with my father. After a fall he had to have 2 back to back brain surgeries and although he's mostly recovered, he's not the same. I'm lucky that I live in Canada and that healthcare is much more accessible and more affordable but the guilt is horrible. My father and I both live in Toronto and my sister lives in Vancouver. I am solely responsible for my father as my mother died when I was a teenager. The biggest struggle in all of this for me has been trying to have guilt free days and trying to assure my dad that everything is fine. I wish I could give you some words of wisdom... Hang in there.

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    1. I'm so, so sorry, dear. I wish it were easier and I wish you had more help. I don't have any great wisdom either, but you're not alone.

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  13. your last line really resonated with me. thank you for sharing - you are truly an amazing person, and daughter. sending your family lots of love and good wishes xxx

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    1. Thank you so much, anon, we appreciate it.

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  14. Thank you for sharing this, it has really resonated with me and the situation I find myself in with my family. Always trying so hard and never feeling I'm really achieving anything and yet not sure what can be achieved. It's exhausting. None of us are alone in these struggles, even though it often feels like we are.

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    1. Thank you, Sarah. I'm so sorry that you're going through something similar, but thank you for reaching out. We aren't alone.

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  15. Rachel, let me or my parents know if we can do anything to help, even if that means bringing over some food and company.
    Love,
    Natalie

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  16. Thanks so much for continuing to post each year about this. My family is in the throes of figuring out caretaking for my grandfather with dementia, and there just aren't any easy answers. My dad, sister, and I spent an hour in the ICU earlier this week trying to convince him to let the doctors treat him. I keep crying in public but coming back to your posts to find strength and gain perspective. My best wishes to you and your family.

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    1. Oh, Laura. I'm so sorry. Wishing strength and love to you and your family.

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  17. This is the four year anniversary of my reading your blog (the first ever post of yours I read was about the accident). I don't know you, but I love your blog, your honesty, and the love with which you clearly live your life, which makes me feel like you're a friend. And every year, I fight back teary-eyes, and the desire to hug some stranger out in California, who is so kick ass and doing so amazingly well with the hand she's been dealt. (I hope this doesn't sound too creepy.) From 3,000 miles away, the fact that you're holding it together, even if it doesn't feel sustainable, even if it's not sustainable, is a wonder to behold. And, as everyone else has said, your readers are in your corner, and have your back.

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    1. Thank you for being here, Meagan. It isn't creepy at all - I feel like I know so many people that I've never actually met. It's the wonder of the internet, right? Thank you for the sweet words.

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  18. Beautiful post, it eloquently states so many of the thoughts that I have had over the last year with the failing health of my father. It's so hard to watch someone you love lose their ability to do the things that make that person who they are. I too struggle with feeling that I can never do enough to help and wondering what will become of me since I don't have children. Thank you for sharing. You and your family are in my prayers.

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    1. Susanna, I'm so sorry about your father. Wishing you strength and love and any peace that you can get in this situation. I'm thinking of you.

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  19. So so tough. What a difficult position to be in. Thinking of you & your family...

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  20. Hi Rachel- I'm reading this in Ireland and am so touched, you really are a beautiful soul and have such a large heart, life and family really are everything. X bronagh

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    1. Thank you, Bronagh - so sweet of you.

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  21. Rachel, much like the past several comments, we don't know each other and yet, I honestly I feel as though I do and I'd like to think we're friends. This happened to my family five years ago when we lost our grandfather and had the responsibility to look after our invalid grandmother who refused to leave her home. It was a trying time for all of us, but most especially my father as he was constantly picking her up off the floor, washing her, feeding her and looking after the house. There would be countless phone calls in the middle of the night saying that she had fallen out of bed and couldn't get up. It was a nightmare. We eventually had to put her into care and she hated us the entire time until she passed away. We still believe that we did what we felt was right. Though it never made my father feel any better.

    Rachel, what you're going through is hard and as I sit here reading this all the way in Australia, I feel for you so terribly. I have read every single post that you ever wrote on Dave's accident and it's heartbreaking. Always remember to surround yourself with your family and all of their love and you're never alone. Sending you hugs and well wishes x

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    1. April, thank you. I'm tearing up reading this. I'm so sorry that your family had to go through that and I hope that your father can come to peace with it. Sometimes the right decision just feels so wrong.

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  22. this breaks my heart, but at the same time i admire and look up to your tenacity and strength. lots of love to you, dustin, your mom, and your family.

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    1. Thank you, lady. I appreciate it, so much.

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  23. Rachel, like the other commenters I tear up at these posts every year. What you and your family have gone through is hard to imagine. Please know that I, and the rest of your fan club are rooting for you and your family, and better healthcare options in the states.

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    1. Lindsey, I hope we get that too. It kills me that we are in a way better situation (we have full insurance) than so many other people, knowing how hard this has made our lives. I can't imagine doing it and also going bankrupt from the expenses. Thank you for your thoughtful words.

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  24. you write this so beautifully and there are so many sentences and quotes i want to hold in my heart and my head to remember and to remind myself. keep fighting - i will be keeping you and your family in my thoughts.

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    1. Thank you, Colleen. We will, always.

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  25. I'm a newer reader and just read your previous posts from the last three years and they all broke my heart. I can't even imagine something like this. Your strength is admirable. Cheers to you and your family, and for a better future!

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    1. We appreciate it, Caitlin, thank you.

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  26. sending positive vibes and thoughts your way. you are right, family is always worth fighting for, and it is all we have in the end.

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  27. Oh, Rachel. I wish so much there was an easy (or at least *easier*) answer to all this. Sending y'all so much love.

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    1. Thanks, dear. I wish there were easy answers too, but I'll gladly take the love.

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  28. I think others have said it better but I just wanted to say I am so sorry for what your family is going through, and I thank you for sharing this because it is so honest. I wish you and your family all the best.

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    1. Rafael, thank you for your words, truly.

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  29. Hi Rachel - I've been a longtime reader and fan of your blog, but wanted to say a special thanks for sharing such beautifully composed thoughts regarding a heartbreaking ordeal. Thank you for sharing your story. Best to you and your family.

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    1. Thank you, dear - I really appreciate it.

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  30. Keep on keeping on my dear. You are incredible and don't you forget it. Much love from England. xxx

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  31. Thank you for sharing. I really am a fan! I don't know if this information is something you already have or is of any relevance but my mother in law is the executive director of the Brain Injury Center in Ventura County. I'm sure that you are full of info at this point but I felt compelled to pass this link on. http://www.braininjurycenter.org
    Be kind to yourself.
    Alicia

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    1. Thank you, Alicia! We aren't in Ventura so I hadn't found that resource but I'm checking it out now. Thank you for passing it along.

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  32. Rachel, I'm one of your blog lurkers…love your pictures, posts, DIY's, etc. This post broke my heart for your step-dad and your entire family. To try to find a balance in this new normal must be so incredibly hard on everyone. My daughter has special needs, and of those she has seizures. I just literally started looking at therapy dogs and found a man who literally works wonders with his dogs. I urge you to take a peek at his website (there's a lot to read) and even give Bob a call. I spoke with him last night. And to say that I'm in encouraged is a complete understatement. you can read about his work at www.dogwish.org. Best of luck to you and your family.

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    1. Hi, Jessica - how interesting! We talk about seizure dogs all the time (wishing we could somehow train Circe to be one). My heart goes out to you and your family and I'll check out Bob's website.

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  33. I can't even begin to imagine being in such a situation and I'm so sorry to hear that you are going through all of this. I did want to share a link to another blogger though. I'm not sure if you've ever heard of Melissa Jill, a photographer? She went through similar things with her father and as soon as I read this post I instantly thought of her. Either way, here's one of her entries about her father : http://www.melissajill.com/blog.cfm?postID=954&feeling-nostalgic

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    1. I haven't read her blog before, but thank you, Vanessa! I'll check it out. Brain injury is so mysterious and so much more prevalent than we realize.

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  34. Rachel - The only constant in life is change. Or at least, thats the message the hospital staff keeps giving me.

    Thank you. Thank you for your honesty and your openness. Over a year ago my dad was diagnosed with a rare form of lukemia. Since then, my family and I have been in a similar limbo. Will it get better, worse? How do you plan when the future is so unknown? How much longer can my mom be a full-time caretaker without running herself into the ground? What is the appropriate role for the rest of the family? I too am married and know its important to move forward with our life but similarly feel responsible for remaining actively involved in the treatment/caretaking plan for our family member.

    I happen to be a personal injury attorney, as is my dad. Our whole job is to help people in situations like yours, where someone's life is forever changed. So I'm familiar with the fact that a life-changing injury impacts the whole family. Now I'm sorta in my clients' shoes. What's most amazing/complex/scary to me is the whole mourning of someone who is still here. I feel guilty, sad, and lost all at the same time. Your comment in a previous post about missing his words of encouragement, hugs, and love of you, put into words exactly what I've been feeling. A few weeks ago I decided to look on the bright side and try to make some new holiday traditions. I committed to having both families for thanksgiving and now my dad has taken a turn for the worse. Where does this leave thanksgiving? I dont have the answer. What i do know is that i've been bumming around, crying or being on the edge of crying for days. Nothing particular is wrong/different than any other day in the last year and a half but that lump in my throat you described just won't receed. I try to believe that there's positives in even the worst situations. Opening your blog, hoping for a little light, and getting this post was exactly what I needed. Thank you again for sharing, for putting one foot in front of the other, and for admitting how damn hard it is! All my best.

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    1. My dear, my heart goes out to you and your family. I'm so sorry that you're dealing with that. I know there are no good words, but I'll be thinking of you and your father, especially this month.

      As for Thanksgiving, there isn't any perfect solution, but figure out what you can do and then do the best you can. The first Thanksgiving after the accident I left the hospital at 4 am, went grocery shopping, cooked, packed everything in tupperware and then we ate in the hospital. I packed our china and silver and we just perched wherever we could in that tiny room and it meant so much,even if the food was cold and we had nurses coming in to check vitals every 10 minutes and Dave doesn't remember any of it. I'm still glad we did it.

      Sometimes you just have to cry it out and then figure out how to proceed. Just be kind to yourself. You aren't alone, at all.

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  35. Wow, that's tough. I hope you find some better fits for your family. Much love.

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  36. I'm a long-time lurker...but was compelled to comment. I am so, so sorry for your family. I've been through something similar, yet different, with my mother, and I know very well many of the feelings and thoughts you mention. Sending thoughts and prayers your way.
    -another Rachel

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    1. Thanks for your words, Rachel. They're much appreciated.

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  37. my family is lucky in that my uncle's stroke left him sometimes unaware of how miserable his situation is. he just accepts things as they come, he's not a difficult patient, and he finds pleasures in little things like opera or eating. he's in full time care because our family can't watch him 24/7. but sometimes when we walk into his room with a snack or treat, ready to watch rachel maddow with him or sit around and tell silly jokes, we find him crying and aware of how miserable his situation is. and that's what's the most heartbreaking.

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    1. Oh, that is the hardest part, I think. Being aware and yet unable to change things. My heart goes out to you and your family, dear.

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  38. every year when you give us an update, my heart breaks for your family all over again, but i'm so glad you share and trust your readers with this part of your life.

    i wish i could offer you some comfort, and i can't really imagine what words i could say that could do that, so i wish you all the best as you continue to figure this out. my heart is with you all.

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  39. i really feel for you, rach. i think you're making the right choices in doing everything you can, lots of research, and still carving out time for your own life. know that my thoughts and prayers are with you.

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  40. Thanks for consistently giving voice to this very real aspect of life and of family. It is the part that doesn't get talked about too much, as it feels like if we don't bring it up, maybe it will never apply to us. My thoughts are with you and your family. Even if you don't feel like it, you are a beacon of love and encouragement to the rest of us.

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  42. It's heartbreaking. My stepdad had a very severe stroke 3 and a half years ago (in his mid 50s without any of the risk factors). He and my mom have been together since I was 3. My mom managed somehow with a regular caretaker but that is still only 20-30 hours a week when there are so many more (she also works full time). The truth is it changes everything and it will never be the same. Accepting that doesn't make it easier, though.

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    1. Oh, Zoe. This makes my heart break for you and your mom. Caretaking (especially before your parents are really elderly) is such a difficult thing to deal with.

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  43. This post is heartbreaking. Both my father and mother-in-law are going through this with their mothers. Needless to say, it is a tough situation. The worst part of it is the struggle to reason with a person who is less than capable of taking care of themselves. I am so sorry you are going through this and I hope that it will get a little easier for you & everyone involved in the long run of things. Hugs and many prayers...

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  44. Thank you so much for sharing this, Rachel. I hope that (by reading) we all can lift a little of your burden to help you through the next few months. I'll be thinking of you and Dave and your whole family, and sending all warmth and good energy your way.

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  45. Thank you Rachel - you truly are a blessing to all who read your blog. Although we are all strangers, you have us all behind you - sending good vibes and love to you and your family.

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  46. My Mother has a severe traumatic anoxic brain injury. I completely understand what you are going through. I felt some peace reading your post, as I'm not great at putting how I have been feeling into words. I'm not sure this will be of much help, but I am fortunate enough to have the Bay Area Brain Injury Network (formally the Marin Brain Injury Network) in my neck of the woods and I have been able to find resources and been able to utilize their caretaker support group. Although you probably have a long list of resources, I thought I'd pass along their website : http://www.mbin.org/index.php . I often think about your blog and what you are going through. I wish you and your family peace and moments of respite.

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    1. I'm so sorry for your family - this situation is just so difficult. Thank you for the resource tip! I don't think I've visited their website before and I'll check it out now. Every time I feel like I've done all the searching I possibly can, more resources pop up! Best wishes to you and your family, dear.

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  47. I thought we were getting close to the anniversary and then I missed it, coming here now to add my thoughts to the many before me. Wishing there was something I could say. I feel like you always have the right words for me, and now I am wordless for you. It consistently amazes me, year after year, that you can write about Dave and this event with such beauty. Sending love and courage through the interweb.

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    1. Thank you, Caitlin. Your support always means so much.

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  48. When I read this I can't help but think what a wonderful daughter and person you are! How blessed is your family to have you!! Your situation is so hard - I feel so badly for all of you. Do you have family friends or church members that could step in and help a bit? I'm sure you've explored all those options.

    Don't give up your dream of having kids. If nothing else, think of the joy it will bring to your extended family! :) You sound like you will be such a lovely mother...

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  49. Every year I read your post about your stepfather and it breaks my heart all over again. I so hope that your family can find a solution that will work for all of you and provide some peace and comfort for everyone.

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  50. So much love to you. So much. x

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  51. My heart is with you and your family. Your strength shines through - I hope you know that. Up here I know there is the Central Coast Center for Independent Living, who help those with disability regain their independence and live life. Maybe you want to check them out? :) They run the New Options Traumatic Brain Injury Project, one of seven demonstration project sites in California. XOXO

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    1. Thank you for the resource, Cheryl! I'll check it out.

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