Sunday, May 12, 2013

It's hard to rely on my good intentions, when my head's full of things that I can't mention

I am grieving.  If you've been following Jay's blog, you know why.  I can barely think about anything else but what the next few months will bring.

I'm full of fear, and profoundly sad.

Sometimes I do that awful thing of comparing grief, and think that I'm being awfully self-indulgent and selfish to be as grieved as I am.  One of the things I said to Jay early on in our relationship was that I knew my place in it, that I knew that I would never be first in his heart - that place will always be filled by his daughter, and rightly so. And I now realize that as the jenny-come-lately, I have the least to lose of all the people around him.

But there are times in this process where I feel like I'm forgotten (which I know is not true - witness the outpouring of concern and care I received on the announcement of Jay's terminal diagnosis, and continue to recieve) and where I fear I will be left with nothing.  The latter is harder for me to cope with, as I am quite literally the last in line.  I know my place.

I have no place or time to let this grief out, for many reasons. There's often no safe space for the expression of my grief, because of who's around or because of what needs to be done. This is becoming difficult for me.  I'm carrying a burden that even I don't know the size of, and it's just going to get worse as time passes.

I am grieving.

18 comments:

  1. I am so sorry this is all happening.

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  2. I'm no one to you guys, just someone on the other side of the world, but I'm hearing you, Jay, and now you too, Lisa - like everyone reading your stuff, I'm wishing I could help - I feel so sympathetic, Lisa - you have grief and don't even feel the right to it - what a terrible position to be in.

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  3. As someone who has walked this road, I can't tell you how important it is for YOU to have a person who acts as a sort of caregiver for YOU. (Plans talk a great deal about the role of a caregiver in medical situations, but relatively little about what that caregiver needs.) Assign a trusted person, if you must. Having a safe place to speak your fears and hurts without hesitation will give you strength.

    I know that process. I know those feelings. You are not forgotten.

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  4. Both my brother who just died and his daughter who had (and has fully recovered from) Hodgkins' lymphoma at age 17 agree that being the sick one is easier than being the caregiver. This doesn't feel true to me, but they have lots of data on their side.

    I agree hugely with blairmacg that you must have some place to put your feelings, ideally with someone who doesn't have a huge personal stake in Jay. I don't know you, and I barely know Jay, but I would surely send you my email and phone number and offer to be a listening post--I just bet you have your own people for that.

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  5. I do have an excellent emotional support network, with plenty of people to share my feelings with, so no worries on that score. My challenges are much more of the in-the-moment variety, where I really need to be able to sit down and have a good cry, and right then I can't. Those things build up, and I worry about having a shitstorm meltdown at exactly the wrong moment.

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    1. "...exactly the wrong moment."

      I have never found a good moment to have a meltdown, at least, not in company. If it happens, it happens. And if you feel guilty about it (I am *whoa* projecting, here.) think about who would be the first to forgive you, and then maybe, consider forgiving yourself.

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    2. I don't feel guilty for the meltdown itself, but more the effect it has on those around me. But yeah, what you said.

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  6. I am so glad you have a good network around you, and now I understand that you're referring more to the in-the-moment. I'm hoping the below comment of mine doesn't come off as preachy or know-it-all. If it's bothersome, feel free to delete it. :)

    The being unable to cry and break down in the moment is the core of what makes caregiving hard. Folks think it's the physical stuff, or the lack of sleep, or any number of things. But really, deep down, it's the fact your outward expression of stress and pain and fears must exist only on a schedule that isn't yours to control. There are feelings I lost the opportunity to feel in the moment because a couple days had passed between the trigger and adequate privacy. For awhile, I lost the ability to cry more than a few tears before shutting down. I acquired an odd, repetitive sigh as a means of release.

    If the meltdown comes, it comes, and there really won't be a "wrong" moment. Someone else will, for the moment, step up to keep things going, and be more than happy to step down again once you come out the other side. That's why the whole network is important.

    As I said, I do hope this doesn't sound preachy or pushy. There's a fine line between "sharing in support" and "sharing to the point of utter annoyance."

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    1. Neither preachy nor pushy, and I thank you for your thoughts. I'm slowly coming to understand the reality of what you're talking about. I've been comparing it in my mind to the reality of being a parent, where your life stops being your own. I've never been a parent, so this is a new experience for me.

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  7. Parenthood is probably a better comparison for someone who *hasn't* been a parent because it'll come without the "baggage" of treating the person you're caring for as a child. :) You're a step ahead of where I was!

    But there is another side to caregiving, and it's the reason I would again agree to be a primary caregiver. You will be the one to share your loved one's *life* as no one else. Yes, it'll be hard. But there will also be amazement, passion, revelation, and even humor and laughter.

    The ones we care for will often apologize. In truth, they have given us a gift of boundless trust and--most importantly--their time and company. It doesn't make the hard times better. It doesn't "balance" everything out. But it's a separate and beautiful thing.

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    1. Yes, and yes, and yes. This is the gift that I keep finding in all this grief, and while I would give anything to change the outcome of the situation we're in, I wouldn't want to lose one minute of that gift.

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    2. Exactly.

      If you ever have the want or need, feel free to tap me for info and such. You can message me through LJ if you'd like. Feel free not to, as well. That's YOUR choice. :)

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  8. We've never met, Lisa, but my thoughts are with you. Caregiving is hard, as is feeling like an outsider (in some ways at least) in an intimate relationship that's going through something people in your and Jay's phase of life should not have to be dealing with. It's so damned unfair and wrong that this is happening, and I wish there was something I could say, some piece of advice I could give, that wouldn't be impossibly trite and out of place.

    There isn't, of course. I am grateful to you and to Jay for sharing so much about something that is often hidden.

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    1. Thank you. Your simple desire to find the right words is enough, and I am grateful.

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  9. I think it's not a line, but a circle. You may be a smaller piece of the circle, a smaller wedge of the pie, if you will, but you are part of it. And it's a pretty big pie, so as has been noted above, when there are time you can't cope, there will be others to step in while you tend to yourself. And you'll come back refreshed and more able to cope. Hugs to you for all you do and all you are.

    Astrid

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    1. Thank you for your kind words. The image of the circle is a lovely reframe of the situation, and it helps a lot.

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  10. As someone who adores Jay, I'm delighted that he has such a caring, thoughtful, articulate person by his side. I am familiar with many aspects of your journey both personally (food issues & caregiving & bereavement) and professionally (therapist, bereavement counselor at hospice). You're walking a really hard road right now. I can understand how you'd feel like a "jenny come lately." We call that "disenfranchised grief." Sometimes people will react as if you have less right to your grief than you do, as if love can be measured in time. We're not talking about doing time on the job to get a pension. You don't have to earn your intensity of feeling.

    I hesitate to give advice when someone hasn't specifically asked me for it, but I will say that I will gladly help you in any way I can. For now, please know that you're in my thoughts as well.

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    1. Thank you for your kind words. I should make it clear, though, that I'm the only one questioning my right to my grief. No one else around Jay has even hinted at such a thing.

      And advice is welcome, so feel free to advise. :)

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