Wednesday, November 6, 2013

Five years

It is five years since Dave's accident today and I really, really didn't want to write this year. I don't like where I am in this process. Which is even more dismaying because I thought the "process" was over, that I had come to a point of acceptance. But apparently not. Apparently there are layers upon layers of process I'm still waiting to discover and I'd really like to know when it ends. I'm writing anyways because this annual check in is important to me, personally, and I make it public in case anyone else reading is dealing with something similar. (years one, two, three and four here)

This year I am angry. Angry and resentful and completely ashamed of myself for feeling that way. I'm exhausted. Our family is exhausted. I'm frustrated that every solution I've come up with over the last five years has failed or at best been extremely imperfect.

Over and over again I think I've finally given up hope (which I guess I equate with acceptance, that elusive state) and then I think of something else and manage to convince myself that this time it will be a solution. And then it fails and I lambaste myself for my stupidity. There is no simple solution. My family is not going to magically be fixed.

In August my mom got very sick and we had to scramble to find a way to take care of Dave. In desperation I ended up bringing him to work with me for a week* and then found a respite care facility close by where he could stay for another five weeks. I convinced myself that we would use this time to somehow improve things. I found a self therapy program for brain injury online (patient guide here, family guide here). I read it and felt hugely hopeful** and tried to get Dave to work through it. He was motivated in theory but not so much in practice. I struggled, trying to decide how much I could expect from him, whether the difficulty of pushing through the program might be worth it. Every day for at least an hour I would push him to make a schedule, to work on the exercises, to figure out meaningful activities for his life. I ended up wrung out and exhausted. Dave felt inadequate. We were both resentful. I was putting in long days at work (trying desperately to prove that my family situation wouldn't impact my work performance), hitting the gym in an attempt to knock out some anxiety and then heading directly over to work with Dave before going home to make dinner at 9:30 pm. I don't know how people do this. And there are so many people out here who do this, or something similar.

Here is what I hate about myself, what I don't want to admit to anyone - I'm resentful that this shell of Dave is taking up so much of my time and energy. I want to be able to spend more time with our other parents, who also need us. I want to be able to spend more time with Dustin. Our friends are buying houses and having kids and I'm so damn tired and discouraged that half the time I can't think more than a month ahead, juggling family schedules and trying to make sure that no one feels neglected. I feel hollowed out, right when I want our lives to feel full of possibility. I want to be dreaming instead of doing constant damage control.

I'm terrified and ashamed by how bitter I can feel towards Dave at times. None of this is his fault. And yet I'm still angry with him. I still manage to be hurt by the fact that since the accident he hasn't once asked me how my day went, or how work is going, or how Dustin and I are doing. I know that this isn't his fault, but it still hurts, to invest so much time in someone who has so little to give back. I worry that all this anger has displaced the love we had. But the first night I had to leave him in the respite facility, as I watched him walk into the dining room for dinner, alone, without one of us, for the first time in nearly five years, I had to fight the urge to stay just so I could make sure he was okay. I was so afraid he would be lonely or disoriented, that the other residents wouldn't understand him and he'd have to sit alone. My fear felt physical, like a punch to the gut. I dragged myself home and cried for three hours before giving in and going back to check on him. He was fine, of course. How can I love him so much and still feel so much anger towards him? I want to be a person who loves unconditionally and gives selflessly, who balances work and family and a personal life effortlessly and still has a sense of humor about it. The best I can seem to do is to look like that person at least some of the time. Inside I just feel horribly selfish, fraudulent.

There is still so much love in our family that I have to believe we'll figure out some kind of long term solution. (If I can't believe that, how can I keep going forward?) I'm not sure what we're going to do but we'll keep trying. In the meantime, I'm fighting to break myself out of this crisis mindset, to whatever extent I can. The anger and resentment were big wake up calls for me. I don't want to be an angry person and I don't want to resent my family. So I'm trying to set aside more time to just hang out, fighting the (entirely self-imposed) guilt I feel every time I'm out having fun instead of doing something for my parents. D and I are looking at potentially moving to a new neighborhood, which is no big deal when you rent, except that it feels simultaneously impossible and overwhelmingly exciting. This is how I know I need to open up my life a little more, because the prospect of moving 7 miles away feels daring and spontaneous (note that we've been talking about doing this for four years and keep putting it off because it never seems like the right time - I have to stop waiting for the right time and just start doing things).

So I'm not in a good place this year, but I'm going to do everything I can to be in a better place next year. I think I need to stop fighting this situation and just work on changing myself as best I can.




*Um, yes. This was not my finest professional moment. Asking my boss to let me bring my brain injured stepfather to work with me was difficult but taking time off would have been a bigger hardship and I'm incredibly lucky to work in a supportive environment. I try really hard not to bring my personal issues to work with me because I'd like to be known for being awesome at my job, not for being that person with all the family crises. But sometimes it's unavoidable.

** I'd highly recommend this program for people dealing with TBI. It was helpful to me, as a family member, and I think it would be amazing for many patients. I'm not sure if Dave isn't quite motivated enough or if it's my fault for not having enough time to dedicate to it, but even on a limited basis I think it was useful for us. If we could somehow get the system into place, I think it could be even more useful (apparently I'm chronically optimistic, even when I'm trying not to be).

59 comments:

  1. Don't be so hard on yourself. I only know you through your posts, but clearly you are generous, thoughtful and loving - and only human. Take a deep breath and keep your head up!

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  2. Your posts each year are so powerful. I'm glad you took the time to write it down, both for yourself and for us, who can feel every one of your emotions through the incredible way you write. While we may not be able to do anything physically to help you, know that there are people out there thinking of you, hoping for progress for Dave, and peace for the rest of you. Whether you believe it or not, you are doing the very best you can, and that's all you can ask of yourself and all anyone can ask of you. xoxo

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  3. This is so brave and beautiful, as are you, and all that you do.

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  4. I cant imagine what you go through daily. I also cant imagine this happening to me or what I would feel about it. Please do not be hard on yourself for your emotions. I assure you, anyone else in this position would feel that way and if they say they wouldn't they are lying. Anyone young and in a good marriage would want to be a dreamer, not a care giver. Not that early, not now.

    I wish I had advice, or something profound to say but sadly, I don't think that would make much of a difference. You are strong, and brave to have made it this far without everything falling behind. Be joyful about the good, and lean on others to vent and heal yourself. YOU are important too and you must take care of yourself to be able to take care of others.

    "Although the world is full of suffering, it is full also of the overcoming of it." -Helen Keller

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    1. this comment says it all. co-sign. (hugs)

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    2. Yep, captures everything. xoxo

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    3. Thank you, hon! I love that Helen Keller quote - will be keeping it in mind.

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  5. I'm a long-time lurker (but I love your site -- book recs and cocktail recs most of all) but I wanted to say that this post really resonated with me, and I want you to know that I struggle with very similar things given my father's neurological disorder. As I keep telling myself: Your feelings are valid, they do not mean that you're a horrible person, you are allowed to feel like the world is unfair, and you are allowed to want to be a dreamer. I think in my struggle to be "the best version of myself," I sometimes forget that setting aside some time for me (and guilt-free time!) is probably among the most critical components of being a good person to others. That time, those "selfish" moments, are among the things that make it possible to be unselfish the rest of the time. You are doing the right thing in helping your family -- but that doesn't mean that you need to like doing it, all the time. And, everyone is going to tell you how awesome you are for doing the things that you do, but my internal response to that is "big whoop; it doesn't feel awesome, and if given the choice I would give anything to make it so I don't have to do it anymore." I think recognizing that both things can be true -- this sort of care is a good thing you're doing, but it also can suck, a lot, and that's ok -- was one of the most helpful emotional tools I learned how to use in my ongoing struggle to get myself in a good place, emotionally.

    So, in sum: You're not alone, your feelings are valid, and even by posting a piece like this post, what was probably something difficult to do, you helped a random stranger feel a little less alone... so, thanks for that. :)

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    1. Sarah, thank you so much. I'm so sorry that you're dealing with something like this and you are completely right. Having time for yourself is one of the best ways to be able to take care of others when you need to. As I'm sure you know all too well, it's convincing myself to take that time that's the problem! I think I'm getting better at it.

      And you are so, so right. I have exactly the same reaction. Doing all this doesn't feel noble, it just feels like something I have to do and I'd really prefer it wasn't (which sometimes can make me feel like it's not noble at all, because I'm not always coming from a place of expansive generosity and I can feel grudging, as much as I don't want to).

      Thank you a million times for your comment. Not feeling alone in this is everything. My heart is with you.

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  6. I think everything you feel is totally totally normal. My mum had a brain injury 6 years ago and I am so mad with her. She missed my baby being born, my wedding, everything really. And I don't like being around her because I don't know her anymore. She looks like my mum, but she is not the mother who raised me at all. I guess all we can do is try to deal but I think it is what it is and sometimes you have to accept a certain amount of anger will linger....

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    1. Karen, I'm so sorry you're in this position! That anger has been so hard for me to deal with and I can only imagine how much worse it is for you, since it's your mother and you've been dealing with it for even longer. We'll just have to remember that we're doing the best we can.

      I always tell myself that I can't control the way I feel (and therefore shouldn't feel bad about the anger) but I can control my actions. That doesn't always help, but it's all I've got! I'll be thinking of you.

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  7. I check and read your blog almost every day - I truly appreciate the honesty you write with. I can't imagine going through what you go through daily, and I can't even BEGIN to imagine what it's like to write about it and post it publicly. It is so brave of you and I hope you know that there are so many people who support you, albeit from afar. I think it's so healthy to reflect and evaluate your feelings, and to be able to admit even the worst of thoughts. You are seriously so courageous and I admire you so much. Keep doing what you do and I hope everything works out for you!

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    1. Thanks, Jane! This is the most difficult post I write each year, but it always ends up being worth it. Thank you for your kind words!

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  8. "I want to be a person who loves unconditionally and gives selflessly, who balances work and family and a personal life effortlessly and still has a sense of humor about it. The best I can seem to do is to look like that person at least some of the time. Inside I just feel horribly selfish, fraudulent." I read your blog constantly and very much appreciate the honesty you described. I live and am engaged to a man who is a recovering quadriplegic. I struggle each day with my emotions of exhaustion, feeling second and towards others, but in the end I have to remember that his struggle is not typical. He always tells me... "things don't happen to us, they happen for us"... I am so grateful for that outlook!

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    1. Katie, I can't imagine how difficult that must be and I so admire your attitude. I'll be keeping you in my heart.

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  9. Love to you. My dad was diagnosed with early-onset Alzheimer's at 57. Coming up with solutions for my mom, thinking about long-term care-- its so overwhelming and sad, and so hard to not be angry. This post is beautiful, and thank you for it.

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    1. Lindsey, I'm so, so sorry. I know how devastating it is to see that loss, especially when your father is so young. Huge hugs to you and your family. Remember that however you are feeling is how you are feeling, and don't judge yourself for it.

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  10. Thanks for this post. If you're interested to try mindfulness, the book 'Mindfulness' by Mark Williams and Danny Penman has an 8 week course that may be useful. There are lectures on youtube by them that may give you an idea whether they might help or not. All the best.

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  11. thanks for sharing your heart with us. i can't even imagine all that you are going through day in and day out. i am confident your family will find a way to give Dave the care he needs, but also to nurture your own lives. the older i get, the more i realize that wisdom equals boundaries, it's just so hard to know how to draw them. love you!

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    1. Love you, Kris! I can't tell you how much your support has meant through all this.

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  12. Through your valid feelings of anger and resentment, it still sounds to me like you are providing selfless and unconditional love. Your family is lucky to have you, as it is abundantly clear how much you care for them. And as you have shared your journey over the years, it has benefited the readers here as well. Thanks, Rachel!

    (And good luck with the apartment hunt!)

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  13. I just want to give you a gigantic, big hug. Because the feelings this post evokes can't really be put into words.

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  14. Much love to you. That's hard stuff.

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  15. I've been a long-time reader, but have never before commented. Thank you for your transparency. I am a therapist at a brain injury rehab program, and hearing this perspective is helpful in relating more closely to what family members are feeling. I wish you didn't have to be dealing with this, and I wish you and Dave well. The internet needs more people like you who are willing to be raw and open and honest.

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    1. Thanks! I don't know what we would have done without our neuro therapist we were assigned after the accident. Your work is so important! Thank you for what you do.

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  16. If bravery is knowing you're afraid but proceeding anyway, then maybe true compassion is continuing through your frustrations. You're doing a great job, don't forget that.

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  17. Oh honey. I know this feeling all too well. I cried while I read your post. You unearthed the same feelings I felt nine years ago when my grandfather was tragically taken and we were thrust into the terrible situation of looking after my invalid grandmother. The same feelings of resentment, anger and pain are still clearly evident within my family and even myself. My father (her son who bent over backwards to give her the support she needed and believed she deserved a better quality of life) ended up being hated and in turn, us also. When she too passed away not long after, it was truly tragic but also, a relief. Gosh I feel terrible typing this - it was hard, but true.

    It's been nine years and we haven't recovered: my father blames himself for not being a better son and reflects on this every day and on the same day every year we wonder if we did the right thing. We DID. But it's still hard to accept.

    Rachel, all I can say is that you're brave to talk about it the way that you do. Never be sorry for being angry at the situation - it's hard and difficult to accept. I admire you for talking and being as frank as you are about your family and the crisis that enveloped you. I still find it hard to talk about my grandfather and my grandmother (especially now that my fiancé and I are planning our wedding and his family ask me questions about if they're proud - that's awful!). I admire you so much. Take some time and remember to breathe. Everyone has said it - you're doing a great job. And we're always here xx

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    1. April, I'm so sorry for the pain your family has been through. It can be so hard to accept that we've done as much as we can. Because sometimes the best we can do isn't good enough to fix things, and how can we come to terms with that? Wishing you and your family the peace that comes with time. xoxoxo

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  18. Been reading forever but never commented. I don't have anything to add to what has already been said very eloquently by the commenters above. Just wanted to say though that you're incredibly brave and doing a wonderful job. A huge virtual hug from England. xxx

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  19. It seems to me that you are in this situation (and probably every situation - I'd like to reference the Barbie cakes as evidence) going above and beyond. You are a compassionate, loving, and very dedicated daughter. I hope you'll get some time for yourself and D soon.

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  20. Thank you for your honesty, Rachel.

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  21. Thank you so much for sharing, Rachel. I really admire you and your family. I'll be thinking of you guys, and sending all the best energy your way.

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  22. wow rachel - i don't know how you (and your family) do it! thank you so much for sharing everything...my mom died in a plane crash when i was 12 and my dad died when i was 26 but what you are going through somehow seems worse. you describe it perfectly-it is like that person died because they way they were did die. and yes, people say you "should" be grateful (and you are) but the lives of your whole family has changed and not really for the best. you are so special for sharing such personal deep feelings to strangers - thank you. i am sending you all lots of love and strength and positive energy...i wish i could do more. x amy

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    1. Oh, Amy - my heart aches for you! I'm so sorry for your losses. Thank you for reaching out.

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    2. thank you, rachel - i feel the same for you. big hug! x

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  23. admire your honesty and candidness. Family is all powerful and consuming, my husband and I dealt with similar circumstances our first year of marriage and remember feeling exactly the same way. It can rob you of the optimism and hope you feel you should have during those first years together. You will persevere and you will make that move...and it will be thrilling.

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  24. Honestly, it sounds to me like you're doing the best you possibly can, and that's really inspiring. I wish it were easier for you, and I also wish you all the best in dealing with things. But mostly, I just wanted to say that it's clear that you're really working hard to deal with a tough situation. I have some tough stuff going on in my family as well, and sometimes I think I just can't do it for another day, but then I do. I'm trying (and failing, often) to live in the moment, so that helps me some days. What's really amazing about this post is your honesty. Thanks for that.

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  25. It also sounds like you need a hug - even if it's virtual and from a stranger. So I'm sending you one - in this comment. Just know that you are not alone - and you will get through this. Keep at it girl. Keep on going.

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  26. Thank you so much for sharing, Rachel. I really admire you and your family. I'll be thinking of you guys, and sending all the best energy your way. i love you <3

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  27. Been reading your blog for a couple of years Rachel, and love it and all your posts - and these yearly very personal ones are a tough read, I feel bad for you and your family.
    But your feelings are so natural and even though many people out there are doing the same, I think just as many are not as devoted, so you should not hate yourself for thinking like this. Good to have goals to improve but the anger is so understandable and you need time and energy for other things.

    Sending you warm thoughts, I'm sure there is light ahead.

    xoxo from Denmark
    Heiðdís

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  28. Hey... I've been a silent reader for a long time, but this post made me so sad =(
    I wish you the very best... I know it's a daily fight but I believe you will find a way.
    My mom has cancer since 2008, and it's hard... Sometimes you just want to give in to these bitter feelings...
    But stay strong!

    Love from Brasil!

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  29. I admire your ability to express all these emotions. Thank you.

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  30. One more reader chiming in with warm thoughts, a virtual hug, and appreciation for your candidness. It made me think that maybe I should write about something that's been rolling around in my brain, but that I've been hesitant (/scared/embarrassed) to put into words publicly. Thanks for that.

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  31. Shit, girl - the imaginary person you are comparing yourself to is just that - imaginary. There is not a single person on earth who is as pure of heart, selfless, and patient as you would like to be in the face of such a difficult situation. And yet, from what you've shared here, I'm fairly certain that everyone around you is thinking the same thing: that you are handling this with remarkable grace, and with all the love and intelligence and compassion you possess. What I wish for you (beyond a solution) is that you can come to see yourself as others see you and treat yourself as gently as you would treat Dave.

    Your mom and step-father are incredibly lucky to have such a wonderful daughter and partner in this.

    A giant hug from NY,
    P.

    P.S. There are so many things I related to in this post, but paragraph 5 was like reading my own words.

    P.P.S. I so admire the courage it took to ask your boss if you could bring Dave to work. You are a fucking badass.

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  32. I hardly know what to say. The one piece of coping advice that worked for me when my mom died suddenly was that I need to be kind to myself. Otherwise, nothing functions. I think that's especially true for you because you may have years more coping ahead. You must be kind to yourself (and forgiving) because you will be a better person for all if you take the self-loathing and regret out of it. Yes, anger and resentment aren't ideal but they're also 1000% realistic given the situation. Work to forgive yourself (say it out loud if you have to), have a glass of wine, get out a craft to feed your soul, and I bet you'll start to feel slightly more like yourself (the kind/caring/devoted person you are) tomorrow.

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  33. oh, my friend. your taking dave to work was an unimaginably fine professional moment. you really do make me want to run harder all the time.

    firing up all of our crazy-ass votive candles in support of you and D and circe finding the spot you deserve.

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  34. Hang in there...in spanish we have say, something that translate like...the darkest hour happens before the sunrise.
    I'm praying for you and your family...hang in there.

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  35. Oh, Rachel. My heart is breaking for you. Know that you are being prayed for at this moment! <3

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  36. You are very brave and I have so much respect for you. I think your feelings are incredibly valid and I enjoy your blog so much because you are so authentic and honest. Have you seen the Crash Reel yet? It is the story of Kevin Piece, who was a snowboarder who sustained a TBI and it deals with the aftermath and goes into his family's struggles in great depth. It is a really fantastic documentary and it proves that you are not alone. (We watched it on HBO, but I think it is in theaters as well.) Thank you for sharing your emotions with us!

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  37. Your honesty is very touching. I have not had this experience, but I have a child with autism. I struggle with the difficult feelings of a life unexpected. I also have a brother with developmental differences and can relate to feelings of resentment and feelings of shame and guilt. I hope that you feel, as I do, strengthened and supported by a community of kind people who try to understand. Take care and continued support to you. Best always, Kim

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  38. Just wanted to say that I read this, and though I haven't experienced anything close to this difficult, I was moved by your honesty and strength.

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  39. Dear Rachel, I've read your blog for a long while now and never commented, but reading this touched my heart. My Mum was diagnosed with Alzheimers earlier this year and has deteriorated quite quickly even tho' she is relatively young. In the aftermath of her diagnosis my Dad became very anxious at the thought of the future and this spiralled into a major depression that became psychotic and I had to get him sectioned after spending a truly terrifying week with him and my Mum as I watched him spiral into a place where I was unable to reach him or help him. As I live some distance from my family my sister took over caring for my mum temporarily, however, only weeks after my Dad was admitted to hospital, my sister was diagnosed with agressive stage 3 breast cancer. I am still dealing with the practical issues these three crises have presented, but, as you accurately describe, the guilt, the anger and helplessness of trying to get through the days can be overwhelming. I send you much love and light, and when it gets bad remember that the sun ALWAYS shines above the clouds.

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    1. Sarah, I am so sorry. That's just a series of impossible situations and I can only imagine how hard you are struggling to cope. I'll be thinking of you, dear.

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  40. I am thankful- at this time of giving thanks- for you for this post. I happened upon your blog as I read cupcakes and cashmere. My dad has been very ill for 20 months- multiple hospital and rehab stays and now, even with help at home which we are very lucky to have, my mom is exhausted and my dad remains very unwell and dependent. I feel ashamed that I don't want to visit, I feel ashamed I don't go more often and, like you, I feel angry that just when my life needs to be less filled with my wonderful parents, it is more. Just when I am enjoying life with someone I love, we both are worrying about sick parents. Thank you so much for giving words to this and for being brave. It helped me a lot to hear someone else say it.

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    1. You are not alone, not at all. I'm so sorry your family is in this situation. I always try to remind myself that I can't control my feelings (and therefore shouldn't feel guilty for them), I can only control my actions. We're doing the best we can, right? Love to you.

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